Oncology Appointment

Another nervy day. I'm at Clatterbridge Aintree to discuss the benefits of chemo. My Oncoscore came back as 18. In women over 50 this usually means chemo isn't beneficial however because I'm a pre-menopausal 42 year old, they want to let me have all of the facts. 

The appointment takes place in a separate building to the normal breast clinic. It's bright an airy and John and I arrive on time for my 9am appointment. I check in and wait to be called. 

My oncologist Dr Hart calls be through. We go through my full cancer history since my first diagnosis back in 2017. She explains why my score of 18 is a grey area and discuss that there would be a 1.8% reduction in reoccurrence should I have the chemotherapy. 

The chemo itself would be a 9 week initial phase on one chemo drug and then a further 8/9 weeks on a different chemotherapy drug. Dr Hart explains that pre-menopausal women could in fact be seeing the benefit from chemo just from the side effects of being put in to early menopause. We discuss the side effects and potential issues as well as the benefits. John and I ask lots of questions but having heard the percentage benefit is so low, I immediately confirm that my decision is to avoid chemotherapy.

With the decision made, Dr Hart then talks us through the next steps for endocrine drugs to suppress my oestrogen production and the radiotherapy.

Radiotherapy

I'll start my having an initial consultation with the radiographer. I'll have a CT scan to gain a detailed scan off my top half so they can plan where the radiotherapy is needed. I'm told about the risks of the radiotherapy such as damage to my heart and the skin issues that will inevitably occur. 

I ask about whether tattoos are still needed to ensure my position in the machine. My nurse confirms I'll get 3 small dots tattooed. 

Endocrine Therapy

I'll be having two types of drugs to reduce the risk of reoccurrence. As both cancers have been oestrogen receptor positive - meaning oestrogen helps the cancer cells to grow these drugs will help stop me from producing oestrogen. :

Goserelin (Zoladex)

I'm briefly told that this drug comes in injection form and will be administered every 4 weeks. It will put my in to early menopause by stopping the production of oestrogen from my ovaries. It works by interfering with the signals in my brain, stopping my ovaries from doing their usual hormone producing job. 

Exemestane

Usually pre-menopausal women are prescribed a 5 or 10 year course of Tamoxifen. One of the risks of taking this drug is that in can increase the risk of DVT. As I suffered with a DVT during my second pregnancy, Dr Hart has suggested I take Exemestane, an aromatase inhibitor, as an alternative. I'll let you know more when I've read up on it!

I'm handed a lot of reading material and send off to read up.

So essentially in about a weeks time, I'm going to be thrown in to the menopause without any HRT support. Should I start to panic? Can anyone recommend anything that might help?

NHS Cancer Prehabilitation

Prehabilitation was something completely new to me this time around. I was invited to the hospital to run through my diagnosis and assist me in getting as fit and healthy for my op and cancer treatment both physically and mentally. 

I filled out a questionnaire in the waiting room and then had a one to one session with one of the nurses. 

I was actually a great session, we talked about various things:

• Exercise: They offered my a couple of weekly exercise classes at the hospital as well as some tailored exercises to assist after my operation. 
• Nutrition: We discussed the benefits of a balanced diet and should i need it, Advice from a  access to tailored support.
• Mental wellbeing: We talked a lot about how I was feeling following my diagnosis. Luckily, having been through it before, I am feeling positive. I have that "I've smashed it before, I'll do it again" mentality but it was explained that I can at anytime reach out to them for emotional and psychological support 
• Information and other services: Education about your diagnosis and treatment from a clinical nurse specialist. Help with stopping smoking if you need it and details of how to get support from the Macmillan cancer information and support service.

I don't think this is available through all NHS trusts but I found it very beneficial and a great help.

Find out more from Cancer Research.

 

"It's Back"

So.... its been a while guys. I had truly hoped that my cancer journey had come to an end but I found a new lump... well more like a spot if I'm honest so I got in touch with the breast nurses and they invited me in for an examination. 

Walking in to the breast unit felt so strange, I was immediately catapulted back in to a place of anxiety. My heart felt like it was pounding outside of my body. However weirdly, I wasn't worried. I genuinely thought, if anything, that I was wasting their time. 

Eventually I was called in to the consultants room. It wasn't Mr Martin, my previous consultant, it was his registrar. We spoke briefly and I explained about this 'spot' before I hopped on the bed to be examined. She spent a prolonged time feeling the area and then decided to send me for an immediate ultrasound. 

I left my mum in the waiting room while I went to have the scan. It soon became apparent that they were concerned and before I knew it I was having a biopsy taken and a marker put in to my left breast.

I tried to stay positive in my head. As I was sent back to the waiting room, I recalled that previous biopsy trips had resulted in a 3 week wait to get results. Knowing I had a holiday to look forward to in less than two weeks meant I could hopefully forget about all this until I returned. 

No... that's not how it went. 

Again I was called back to the registrar and she very bluntly said "Yeah, it's back". No hesitation, no pussy footing around, no three week wait for results... just "Yeah, it's back"

I was so confused and taken aback that I waked out of the office, collected my mum and went straight back to the car. I just was not expecting that news, especially not delivered in that way.

I head home in disbelief. Sh*t, how am I going to tell the children? We're supposed to be going to see Kings of Leon tonight in Manchester. It's the last thing I want to do right now.

I call the breast nurses when I get home to check that I had heard correctly. They apologised for the abruptness of it all and that I hadn't been spoken too by one of the breast care nurses to process. They said although they don't have the biopsy results, they know that it is definitely cancer so they tell you at this stage so you can prepare for it when you come back for the results.

I sit at home waiting for my kids to get home (they are 17 and 13). We have an honesty policy in our house... no secrets. So I get them together when they land back home. I explain that my breast cancer has returned and we go through their questions. They are so understanding but fearful. We hug for what feels like forever, before deciding we should still go to the concert... make memories... and we did...

So we begin again. I'm back in three weeks, after our Summer trip to Crete,  to get the biopsy results. 

It's Prophylactic Mastectomy Day

Today's the day. I'm actually feeling really calm. I'm not due in until 11am as the nurse called yesterday to let me know I could come an hour later as I was on the afternoon surgery list.

We head to the hospital, with my bag packed with everything on my mastectomy bag checklist and this time I head to a general surgery waiting room. I check in but I'm told my husband cant stay with me - the waiting room is for patients only. Why? I start to feel anxious even though I've been ok all morning.

Chris sits down with me while I sort my things out.

"Leanne Nash"

The nurse calls me through just to measure my calves ready for my sexy DVT tights. I'm handed the tights and sent back to the waiting area.

We take a few minutes and then say our goodbyes. It's so scary being left on your own. I hate it.

"Leanne"

Another nurse calls and we head off down a different corridor. First she goes through my details; name and date of birth first and then on with the ID bracelets -both wrists! Next, I'm asked what operation I'm having, I reply right prophylactic mastectomy but explain I still need to talk to my consultant about my nipple options. She used to work with my consultant and puts me at ease about all of the different routes I can take, she even shares anecdotes of her time with Mr M, my doctor. We laugh - a lot. Back to the tick boxes though...Allergies? Metal work? All my own teeth? The nurse is so lovely and we end up chatting and giggling for so long that another nurse knocks on the door to see whats taking so long. The phlebotomist and the anaesthetist have both been calling my name. She wraps it up and takes me to get my bloods done. I do wonder why they are needed again when I have already had blood taken during my pre-op a couple of weeks ago.

This time it's the anaesthetist .  She checks my ID bands and goes through the same questions as the nurse as well as asking if Ive ever had any reaction to anaesthetic before. I haven't but I get a flash back to the poor lady that I heard during my last operation. The anaesthetist tells me Im first on the list so should be going down to theatre at 1pm. Not too long to wait, thank goodness. As she wraps up I can here my consultant Mr M outside. As she leaves he comes in.

He greets me and tells me I'm his only surgical patient today so as soon as theatre opens again after lunch I'll be called. First, I have a few questions about my nipple. I lost my left nipple during my wide local incision. For the prophylactic surgery I was given a number of options for my nipple:

1. Lose the nipple
2. Keep the nipple on the right but no nipple on the left
3. Share the nipple - keep it during the mastectomy but at a later date split it in two and share it with the left side.

Mr M had said that I could just let him know on the day which option I would take.

In all honesty, I had been certain that I'd just lose the right nipple too however this week I had a big heart to heart about how I feel about bad boob and how I want to feel and look as 'normal' as I can. It's just the risk of keeping even a small bit of breast tissue that is playing on my mind. If they find anything untoward at all in the right breast then I'd rather lose the nipple but if its clear then I'd like to share it. I'm also worried that the nipple might die after the op due to lack of blood supply but Mr M explains that he's never had an unsuccessful share.

It's time to make the final decision. "I'd like to keep the nipple and then share it."

Mr M explains that this means he can likely go straight to implant and i'll avoid the bulky heavy expander that I have on the left. I take my top half of clothing off and he marks me up ready with a big black marker. The line goes around my nipple and off to the side across my breast. A different scar to last time.

He leaves  and I go back to the waiting room. I really wish I'd have had someone with me to ask more questions. I immediately panic that I've made the wrong decision and head out to the corridor. I'm in floods of tears. I feel like I'm now tempting fate for the sake of vanity. I hate this.I head back to the waiting room to wait. After 20 minutes....

"Leanne"

The friendly nurse calls me through. It's time for me to don my gown and my sexy DVT socks. She insists we take a photo to document my sexiness. We giggle a lot as I pose for the camera!

Before I know it I'm walking down to theatre. This time there is no pre theatre anaesthetic area so I head straight in to the theatre and lie on the operating table. The cannular goes in easily this time around and I'm given oxygen to breathe. I don't even make the countdown. I'm out.

Two hours later I come around in the recovery room. I'm sore and I groan as I regain consciousness. I ask for something to ease the pain and I'm injected in to the cannular. I fall back asleep.

When I wake up again, they call the porter. I'm ready to be taken to the ward. Last time there were no beds soI had been gifted an ensuite room in the private part of the hospital - no such luck this time.

There are two other ladies already on the general surgery ward and they stare as Im wheeled in. The pain has resumed and I hate the fact that I have company. The nurse comes in to check my obs and I ask her to pass me my phone so I can call home and message my Mum.

My husband says he's going to come straight in. I give a a list of things I want - Lucozade Orange, chocolate and grapes. He delivers!

At 7.30pm we say goodbye for the night. I know it's going to be a long one as I'm on 2 hour observation. I get woken through the night and have to keep asking for more painkillers. I'm given oramorph again so soon im vomiting despite the anti sickness tablets.

Despite hardly any sleep the light comes on to wake us just after at 6.30am - what the actual hell - it's Saturday for Gods sake! I close my eyes and go back to sleep.

A general surgeon visits at about 9.30am and asks how I am. He says i'll be able to go home around lunch time. My consultant isn't here because its the weekend. I ask if the op went welland for confirmation as to whether I now have an implant oran expander. The doc seems confused and has to thoroughly read through all of the notes to confirm I have an implant. I'll be sent home with codeine, paracetamol and a course of antibiotics. As soon as the pharmacy send them up I'll be able to go.

It feels strange this time around. I don't know if it's because it's now the weekend or because I've chosen to have this operation rather than it being a necessity but I feel Im just not being looked after the same. There's no physio to see how I'm doing, tell me what exercises to do. There's no support session like before. When the breast nurse arrives she tells be I wont be given a specialist bra like last time because they are just for cancer patients. It makes me feel a bit down and I just want to go home to the children.

Finally my husband arrives at the same time as my meds. I grab my pillow, he grabs the bags and we head home. I feel a sense of relief that I got what I wanted. It's over. I can start to move on.

Prophylactic Mastectomy - Should I keep My Nipple?

So last week I went back to see my surgeon. We're really happy with the scarring and the overall shape I have with the expander in and Mr M says I'm ready to have the exchange surgery to switch from the hard bulky expander to an implant. At this point I raise the fact that I still want to go ahead with the prophylactic surgery on the 'healthy breast'. 

I can tell my my consultants face that he's against this and re-iterates the fact that it's not necessary. I explain that from Day 1, back in December when I got my diagnosis, I have always asked for them to take both breasts. It just isn't worth the risk for me. I have 2 children, I live for them, I'm not risking it. No way. Mr M says I will need to see the psychologist agan to get final approval. I explain I have already spent sometime with him and I know he will approve it.

Because I'm opting for the second mastectomy, the exchange surgery will need to wait. I now have a number of options to consider for the mastectomy surgery:

1. Lose the nipple
- this would mean I have to go through exactly the same process as before. When you have your nipple removed you have to have an expander to enable the skin to stretch. If I go ahead with this then I'll have mastectomy with expander,weekly fills up to 450cc as on the left side and then once complete and rested the exchange to implants will happen together to allow a better match.

If I go ahead with this option then there are more options of what I can do to look like I have nipples again. 3D areola tattoos, prosthetic 'stick on' nipples and I can even have flesh taken from elsewhere to make a nipple shape in place of those that I have lost that can be tattooed over too to give a realistic colour.

An example of customised nipple prosthesis.
Image: www.feelingwholeagain.com

2. Keep the nipple on the right breast
- this would leave me with 'odd' boobs and looking pretty much like I do now. One breast with a nipple and one without. I already know that this isn't the option for me, I want uniformity. I want to match both sides regardless of whether I have nipples or not.

3. Share the nipple
- this is something that I had actually read upon myself and decided to ask about. So, if I went ahead, I would keep my right nipple. It would remain in place after the mastectomy but at a later date (probably after the exchange surgery and during another day case under anaesthetic) my nipple would be split it in two and made in to two nipples. Half will remain on my right breast and the other transplanted and 'shared' on to the left side.

Keeping the nipple does leave me with a slight risk as there will still be a small amount of breast tissue that remains but given that my right breast is healthy, I am torn. There is a lot to think about. I just need to consider all of the options and do what is right for me.

Mr M explains that once Ive been approved my the psychologist he will go ahead an complete the operation for me. With regards to my nipple, I can just let him know my decision on the morning of the operation. I'm likely to be on the waiting list for 6 months to a year. Thank god I'm getting what I want finally!

Sister Stories: Heather H Brown

July 28, 2016 my life as I knew it, turned upside down. I had gone in January 2016 for my annual mammogram. I had a baseline at the age of 35 and have gone annually since I was 40. My mother had some issues with her breast but hers always turned out to be benign. I had a great Aunt who died as a result of breast cancer but as far as I was aware, those were the only two issues in my family. So, the results came back in January and I was advised that I had calcification that showed up and had not been there the year before. The doctor did not seem too concerned but stated they would like to see me back in 6 months. I was not concerned either but did come home and do some research about calcification. In the end, I felt comfortable with the doctor’s suggestion.

Fast forward six months… we decided to sell our house, my oldest was graduating from High School in May, we had a graduation party on the books for June, and a cruise planned to celebrate my son’s graduation. Sometime in May 2016, I felt a lump doing a self-check. I had my husband feel the spot and he agreed he felt something. Not overly concerned because I knew I had another mammogram scheduled for July plus all that we had on our plate, I pushed it out of my mind. The house sold, we moved, lived in a hotel (Davidson Village Inn), moved into the new house, son graduated, had the party, and went on the cruise. Now it’s July 2016 and time for my mammogram. I had a normal mammogram, paid to do the 3D mammogram, but then they did not tell me to change back into my clothes, no, I set in a room and then was called to the ultrasound room. It was not until then did I ask the doctor, “So, what brings me to this point?” She said, “The calcification from January has turned into a mass and you have formed a new set of calcifications.” As I watched the screen, I knew the mass did not look good, it’s shape was off and the lump was grayish in color. The doctor asked for me to come back for a biopsy. I went for the biopsy on a Tuesday, my husband was out of town and my father was here with me. During the biopsy (not the most pleasant experience), I asked the doctor if someone should come with me for the results, she advised, “It probably would be good to have another set of ears with you.” I asked if she was concerned and she advised, “Yes, I don’t like how the mass looks.” I still was not concerned; my husband was not due back until the evening on Thursday but he insisted on coming back and going with me. Thursday comes around and the three of us (my husband, my father, and myself) head to the appointment. Out walks the doctor and another lady in a white lab coat, it was not until that moment that my heart began to beat really fast and my mind thought for the first time, “I am not going to hear good news.” Sure enough, my husband and I head back to the room and the doctor tells me I have invasive ductal carcinoma as well as ductal carcinoma in situ. What does that mean? Well, I have cancer and need to meet with a surgeon, oncologist, and plastic surgeon. Life started spinning out of control, everything was moving at a records pace. The surgeon advised I would need chemotherapy and a mastectomy. The oncologist wanted to start chemo 2 days after I meet with him. My husband knew I did not want to lose my hair, we had watched his mother go through breast cancer six years ago, so we kind of knew what was in store for us. He had a friend whose wife had been diagnosed with breast cancer and she keep her hair by using something called the penguin cap. My husband began to do research and found out that Wake Forest Baptist Hospital had just finished a study using the DigniCap. So, we set up an appointment at Wake Forest to meet with an oncologist there. I loved everything about the doctor at Wake Forest, she reminded me of my mother, whom passed away approximately 10 years ago. We were told we could use the DigniCap but that it was self-pay and not covered by insurance. My husband and I discussed the cost and both felt it would be worth it to give it a try, if I could keep my hair. I wanted things to remain as normal as possible and keeping my hair would be a big step in allowing that to occur.

So, Wake Forest Baptist Hospital was our choice for my chemotherapy treatments. My first chemo treatment began August 30, 2016, my husband and I arrived at the hospital bright and early. We checked in and I paid for the DigniCap (we did this at every treatment, as I could choose to not continue with using the DigniCap if I did not like the results). I signed disclosures and then was taken back to a private room to be fitted for the cap. It’s an experience, you have to wet your hair, in the small sink in the room, then sit on the bed with your hair dripping wet until they figure out the right size cap. There were many tries, the cap coming off and on several times, one particular nurse was about to cry because she felt the cap was “not perfectly fitting on my head as it should,” I told her “absolutely no crying.” That process took about an hour or longer, then we had to wait for the machine to cool to it’s proper temperature, negative 3 degree Celsius. Once the machine reached the desired temperature, they could begin the pre-meds and then the chemo. I had four chemo drugs that I was receiving, which took about four hours, then I had to cool down for two hours, still wearing the cap. Needless to say, the day was very long.

In between chemo treatments, I would go to the Oncology unit here in Huntersville NC, to receive fluids and have blood work. My chemo schedule was every three week and every week getting blood drawn. There were times my blood work was very low and potentially I needed a blood transfusion, I did not want one, so i asked all my friends and family to pray as well as myself that this would not be needed. Every time, God came through with my prayer request. I also have to have my heart checked every three months due to one of the medications I receive could damage my heart. I have had two of those and so far, my heart is just as strong now as when we started. My six rounds of chemo stopped on December 13, 2016. Overall, the process was manageable, it definitely got worse as the treatment accumulated but I could manage it with medication. I am happy to say that the DigniCap allowed me to keep 90% of my hair. I cannot tell you how much this affected my mind set, attitude, and overall well-being. I looked the same, acted the same, maybe a few pounds lighter but overall, I was me.

During my treatment, my half-sister, whom I knew of but did not seek out as my mother felt since she had to give her up for adoption, it would not be right to up root her family if she did not know she was adopted, found me on September 16, 2016. Talk about God’s timing, it could not have happened at a better time. Our biological mother had died 10 years ago, so she did not get to enjoy getting to know her first born.

Following treatment, the next step was surgery- scheduled January 13, 2017. Bilateral mastectomy plus the start of the reconstructive process and removal of ovaries and fallopian tubes (all other parts had been removed six years earlier). I needed three doctors to complete my surgery. The surgery would take approximately six hours. I stayed one night in the hospital and came home the next day. I will be going through the expansion process for a couple of weeks and then I will have to wait eight weeks before I can do the exchange surgery. During all this, I still go and receive my Herceptin infusions every three weeks until the end of August.

After my surgery, the pathology came back that there is “no evidence of disease, NED.” Praise the Lord! Throughout this journey, I looked to my faith for comfort of the unknown, I knew he had chosen me for this diagnosis and I knew the outcome was in his hands.

Closing, this journey would not have been possible without the loving support of my husband, Charlie Brown, my boy’s Conlan and Keegan, my father, Bill Howard, my newly found sister Seanette Meserole, and my Flock (Jo Ann Darby, Cindi VanWingerden, Stephanie Edwards, Nila Grier, Shelley Hartsell, Rena Taylor, and Jen Hellar), as well as Stephanie Bradley and Jenny Bodenheimer, plus a whole slew of family members and friends. As they say, “it takes a village” and it sure does.

My official diagnosis was:

Right breast
- High grade invasive mammary carcinoma
- Nuclear grade 3 of 3
- Mitotic rate: High
- Combined histologic grade High (9 of 9)
- Minor component of high-grade DCIS with lobular extension also present
- HER2+ amplified

Also had high grade DCIS with terminal duct lobular extension
Nuclear grade 3 of 3


Following my NED status I have since formed a nonprofit 501 3 (c) called Hope for Hair Foundation. Our mission is to provide support to cancer patients at risk for hair loss as a result of chemotherapy in two ways: Financial aid for DigniCap (or other cooling cap methods) and by educating and providing products that will help ensure successful hair retention.


For more information check out our website at www.hopeforhair.org.

What To Pack In Your Mastectomy Hospital Bag

Now that my surgery is over thought it might help for me to share the things that I needed during my stay in hospital.

Try to remember that after your operation your arm movement will be really restricted and you'll have drains in place. Here are my top takes:

For the Hospital

Slippers - make sure these are non slip. The last thing you need is a fall when you've just come round from anaesthetic.

Dressing Gown - in the UK you are usually asked to wear your dressing gown to walk to theatre before your operation.

Underwear - an obvious one I guess but if you are having DIEP flap surgery then big Bridget Jones knickers that go over your tummy scar are best.

Front Fastening Post Surgery Bra - It is virtually impossible to wear a backwards fastening bra after surgery because of your restricted arm movement. In the UK your breast cancer nurse will provide you with one front fastening bra the day after your surgery. I've found this the most comfortable post surgery bra I have and I sleep in it every night at the moment as it supports the weight of my expander.

Button Up Pyjamas - as soon as I woke up in my hospital gown I wanted to get changed. There was blood on my surgical gown and I needed it off. I waited for help, but again, ensure its front fastening and button up so you can get in and out of them yourself. I bought a pair a size up as I knew that I would be swollen and carrying my drain around. Elasticated waist is a must too so that you can pull your pants up and down easier.

Drain Pouch Bag - Literally THE best thing I had in my bag. I've heard so many stories of women having to pin their drain bags to their tops, their bras etc but I researched and got myself a Drain Dollies bag. I just had a single mastectomy so I only needed one but if your having a bilateral mastectomy then get two - one for each side.

Mastectomy Pillow - When I came round after my op I was quite uncomfortable under my arm - possible due to having the sentinel node biopsy. Luckily I had ordered a FREE mastectomy pillow from Jen's Friends. Again I only needed one but if your having a double mastectomy then get two.

Snacks - If you've read my Mastectomy Day Diary then you'll know that I had to wait for ages to be fed after my operation. Pack some healthy snacks in your bag so if you're feeling peckish outside of hospital meal times you don't have to wait on someone else. Make sure they're individually wrapped if you can - for hygiene.

Straws - lifting a cup to your mouth is hard so straws are a must. The hospital will probably have some but I packed some in case.

Medication - always take any regular medications with you and hand them to your medical team so they can ensure you are taking everything you need to whilst you are in their care.

Toiletries - again seems like an obvious one but the things you are most likely to forget! Toothbrush, toothpaste and wash things. I took face wipes so I could freshen up through the day.

Make Up - Some of you might thing this is daft but I wanted to feel more like myself for visitors and for the journey home.

Mobile Phone & Charger - I took my own portable charger in case there were no sockets available. I hate being out of contact with my family so my phone was a must.

For Heading Home

Front Fastening shirt - again this is for ease - to assist with your drains and with your arm movement. It's impossible to pop anything over your head because you cant lift your arms. Again I bought oversized because of swelling,

Elastic-Waisted Pants or Leggings - do not make the mistake of taking button up jeans. It's impossible to do up the buttons and pull up the zip! Elastic pants are easy to get into and out of and wont have you splitting your stitches.

Slip-on Shoes - avoid laces and anything that needs effort to pull on. Bending is hard and sore so the easier to put on the shoe, the better.

Pillow - I took a normal bed pillow to put over my front and fastened the seat belt over that to protect myself. I could feel every single bump in the road as we drove back.

When You're Home

Pillows, pillows, pillows - I had to sleep upright for two weeks post surgery and for some people its longer. It can be really difficult to get comfy. Thankfully my painkillers knocked me out most nights. What pillows are best is really down to you. Some people prefer v-shaped pillows to prop them up. I personally used two really firm memory foam pillows vertically behind my regular two duck feather bed pillows.

Prepared Meals in the Freezer - you must remember to eat to stay strong. Having some meals already stocked up is a winner as you won't be able to lift and cook as usual.

Medication - I kept all my meds close to me in a toiletry bag next to my bed. It's worth remembering that you are unlikely to be able to open anything with a child proof cap so try and transfer anything in to an easy access container.

Mastectomy Results Day

I wake up apprehensive and still tired. Our appointment isn't until 3.10pm which just prolongs the agony. We arrange for Grandma and Grandpa to pick the children up from school and head off. It's a strange journey. My husband and I hardly speak, we just listen to The Greatest Showman CD for most of the journey. When 'This Is Me' come on the lyrics hit me.

I've learned to be ashamed of all my scars
Run away, they say
No one'll love you as you are...

These past few months have been so tough. I've piled on weight which hasn't helped but more importantly I've lost myself. I feel different, less confident and despite my positive and bubble personality, I hate what I see when I look in the mirror.

Soon enough we arrive in the car park, we hold hands as we walk in to the hospital. I give my name in at the desk and head to the usual waiting room. My heart begins it's usual pounding. I hate the waiting, its agonising. For me not knowing is worse than knowing. I hate the unknown.

Despite our usual hour in the waiting room, today we are called out of the packed waiting area after about 10 minutes - this never happens.

"Leanne Nash"

I real of my date of birth and head in to see Mr M. Today as well as my consultant and two nurses there is another man in there, he's introduced as the Lead Registrar. I'm asked firstly to head behind the curtain and take my top clothes off.

Mr M says everything is looking good. They had added 250cc into the expander during surgery. Today he would add 50cc more. The needle is huge, so much so that Mr M makes a joke about it being like the needle from Pulp Fiction.

Looking at that image though, Id say my syringe was definitely bigger. Don't panic though ladies - the needle itself is no bigger than the needles they use to take blood.

It's a strange sensation as the saline goes in. The expander moves around inside as it's filled, it's uncomfortable but it's nothing compared to what I've been through so far. My heart is still pounding, wondering the outcome of the results so the syringe moves up and down as my chest moves.

Once complete I get dressed and head back out beyond the curtain. It's time.

"Ok, we've got the histology results back. There was more DCIS in your breast - another 10cm - so in fact it was basically right through your entire breast...

...BUT... (I cling on to this 'but' for what feels like an age, awaiting my fate)

...we have managed to get it all. We've discussed your case in the MDT meeting this morning and because no invasive cancer was found and the lymphnodes we took were clear, you will not need and radiotherapy or chemotherapy."

THANK GOD. SCREAM IT FROM THE ROOFTOPS. DING DONG THE CANCERS GONE.

He continues to tell me I definitely made the right decision having the mastectomy. There was always a chance that there would be no further disease at all and that my breast could have been saved but in my case my whole left boob had been riddled.

The only remaining treatment -  should I decide to take it is a tablet called Tamoxifen. Mr M tells be approximately 13 times that one of the main side effects is vaginal dryness. No word of a lie - they are pretty much the only words I remember from that discussion. And, whilst vaginal dryness is certainly no laughing matter, I did struggle to contain my giggles.

Rather than deciding what to do straight away, I'm given a leaflet to take away and decide over the week what to do.

For now though, with my aching filled up boob, we head home with the best news we've had in 6 months.

Another Sleepless Night

I can't sleep... again. Tomorrow is results day. I find out what histology has come back with from my bad boob and my lymphnodes. There's every chance it could come back completely clear but there's always a chance that they find something nasty - an invasive cancer. Even if it's clear there's still a way to go with treatment - maybe radiotherapy but definitely tablets for 5 or 10 years since my cancer is fed by Oestrogen.

I feel sick to my stomach but I'm really trying to stay positive. Hopefully I will get some sleep tonight.

Mastectomy Day Diary

Midnight
I stayed up late to have a bowl of my favorite Weetabix Minis Chocolate Crunch. Now matter how hard I try and so nervous about the operation that I can not sleep. I listen to my Calm app but it doesn't work. Chris lies next to me tossing and turning too. I just remember that I don't need to worry - I'll be put to sleep tomorrow anyway so tiredness isn't an issue!

2.00am
Still cant get to sleep. Tomorrow is so huge. What if it all goes wrong? What if I don't wake up?

6.00am
I wake up to my alarm. I feel like I've only just got to sleep. My eyes are heavy. I get dressed and re-check my hospital bag. I think I have everything. I can sense Chris is nervous too.

7.00am 
After de-icing the car we set off. We're even nervous talking to each other on the journey. We make small talk. It's so odd.

7.30am
We arrive at the hospital at and suddenly I feel strangely calm considering what I'm about to go through. There are 3 other ladies in the waiting area also having breast surgery and lymph node biopsies today. Chris and I sit in the waiting area, the Winter Olympics is on the TV.

8.45am
"Leanne Nash" I'm called in to the anesthetist first. She puts name bands on both of my wrists and  runs through the usual questions. I confirm the operation I'm having, we discuss past surgeries and my DVT history. All good, I return to the waiting room.

9.15am
"Leanne Nash" Mr M, my surgeon calls me through. He apologises that he may smell of garlic because he was celebrating Chinese New Year yesterday. I take my top off and he marks me up with his marker pen. The comical arrow pointed to the riddled boob. He asks if I have any questions and we talk about lymphnodes. He says he will try and take the sentinel nodes from the main incision so hopefully I'll just have the one scar.

9.30am
"Leanne Nash"
The nurse calls me in to go through everything again. Check the op im having etc. She measures my legs for the DVT stockings. I'm second in to theatre so it will be later on this morning that I'm called. She passes me my tights and down but says I don't need to change just yet so i keep hold of them.

10.30am
"Right ladies. Those you that are having the dye injections for sentinel node biopsy, would you like to follow me?"
I panic because I'm not changed in to my gown. The nurse tells me not to worry but to take everything with me in case I need to go straight to theatre from the radiology department. There are 4 ladies, each with their husbands in tow. We are told to follow two young boys aged about 16 or 17 down to the clinic. They speed off. It takes at least 5 minutes to walk, and we struggle to keep up with them which they clearly find hilarious. I hear them laugh and say they nearly lost all of us. As we walk past the Cafe I can smell bacon and my mouth waters, I'm so hungry!

We are taken to a small waiting room. One by one we are called in. I am the last. Since Chris cant come in I send him off to the cafe. No reason why he should starve himself too.

I go in and the nurse asks my name and date of birth but my brain doesn't work and I forget what shes asked. We have a good laugh.They explain that the needle needs to go in to the cancer tumour location. I explain that I have DCIS but I've already had two surgeries to remove it. We decide that injecting in to the area closest to my scar will work best.

What is a Sentinel Node Biopsy?

To explain, when you have cancer, the sentinel lymph node is the node that the cancer would get to first if it was trying to spread. Examining cells in these first nodes can give your doctor a lot of information about the state of your cancer. During the sentinel lymph node biopsy, they inject dye in to the cancer site. The dye then moves from to the injection site in to the lymphatic system. Blue nodes, or "hot" nodes (nodes with high radioactive counts), are where the dye hits first, these are called the sentinel nodes and all hot nodes are removed and sent to histology for testing.

The injection doesn't take long and then I'm sent back to the waiting area. One of the ladies already in her gown is told she will be going straight to theatre. We are wait for someone to come and take us backup to the ward when I hear the phone ring in the office. I hear my name repeated back and the word theatre. Oh god, I must be going straight to theatre too. I panic! I haven't even got my gown on, it takes about 20 minutes for me to get the DVT sock on usually and Chris is in the cafe!!

I sit there for a few minutes expecting someone to come and let me know but no one does so I knock on the office door. "Excuse me, did I just hear that I'm going to theatre. Do I need to get my gown on?" "Oh yes, sorry love."

The lady that did my injection overhears, she shows me to the changing room and volunteers to go and collect Chris from the Cafe.

I rush as I get ready but feel calm again when I hear Chris' voice outside. I stuff my clothes and boots in to my bag and don my dressing gown and slippers.

A man from theatre arrives with a wheel chair and we head off. The hospital is huge. We go through what feels like hundreds of corridors and up in a lift. Chris and I kiss and say goodbye and I'm wheeled in to the theatre recovery room. Apparently there is a lot of work going on in the hospital so the waiting and recovery rooms are combined fora few weeks.

11.30
I'm checked in at the desk. 2 theatre staff check my name, date of birth and NHS number against my wrist band. There are a number of people in the room, some of which are recovering from surgery and some (like me) waiting to go down. Each person has a member of the medical team assigned to them. Mine is the guy that wheeled me here. I recognise another as the anaesthetist from my last surgery.

12.00
I'm still waiting, making small talk with my new friend when a  new lady is brought back from theatre. The curtain next to me is drawn and i can here the team trying to bring her round. All of a sudden there is a huge commotion. The lady is attempting to get out of bed. They call for assistance, people are running to physically pin this lady down. She is becoming really aggressive shouting at the nurses to get off her and at one point almost pulls her drain out - she's had breast surgery too and I quickly realise that it was one of the other ladies I'd seen up on the ward earlier. After about 20 minutes of constant struggle it becomes apparent that this lady has become aggressive after previous anesthetic before - its on her notes.  I'm on my own, just listening to the poor lady who sounds so scared and the staff trying desperately to calm her down.

12.20
Mr M, my surgeon pops his head around the curtain and lets me know he won't be too long. He takes my notes from the back of the wheelchair that I am still in so he can refresh himself on my journey and diagnosis before he begins.

12.30
The poor lady next door is still fighting so one of the nursing team pops over to reassure me that the lady is ok. Its nothing they have done and it wont be too long now 'til I go down.

12.40
Finally I'm on my way to theatre. Only it appears that I have put my gown on back to front so I have to quickly get half naked in the theatre anesthetic room while everyone looks away. I'm mortified!

Next job is to get the cannula in, I pump my fist to try and assist. Usually I have great veins but since I haven't had a drink for over 12 hours it seems they have shriveled. They get one in but when they try to flush it, it becomes clear that it's not in the right place. They quickly take it out and ask me to pump my first again. As she tries a new place I can feel a lot blood dripping out of the the place shes just tried. The lady realises and asks someone too pass some gauze - there must be blood all over the floor! Soon it's in but it's in a really awkward place at the side of my wrist.

The oxygen mask goes on and the anaesthetic goes in.

SLEEP

15.00 As I start to come around I glance at the clock. I'm told everything went well. Everything feels very numb and I have one drain in place. I'm given a cup of water and I ask for more. I'm so thirsty. I drift back off to sleep.

16.10 I wake up again and ask for more water and more pain killers. I'm really sore. I tell them I'm hungry but they cant give me anything until I'm moved to a ward and at the minute there are no beds.

17.30 I'm still here. Still hungry. They keep me watered but I really need food! People that have come out of theatre after me have already left for the ward. I ask the nurse of they have contacted Chris to let him know I'm ok. She said they usually do that on the ward. I explain he'll be really worried so she goes to get the phone. It won't connect! Typical.

18.00 Still here!! I ask them to try Chris again. This time they leave me with the phone and I get through. Chris sounds so relieved to here my voice. He'd been calling different parts of the hospital and had been really starting to worry. He'd left me over 6 and a half hours ago for an op that should have taken only 2 and he had been thinking the worst.

19.15 At last I hear that I'm moving. I'm the only one left on the recovery ward and I still haven't eaten. Apparently there are no beds on the main ward so I'm going to my own room in the private part of the hospital. Result! Lets hope they have some decent food there because I honestly feel like I'm being tortured. I ask to call Chris again so he can make his way in.

19.30 I arrive. Finally!! They leave me on the theatre bed and wheel me in. I have an en suite room and a TV (although no remote!) I ask them to pass me my mobile so I can call my mum. I tell her I'm ok then buzz for food. They bring me some soup and a sandwich which I devour in minutes. I decided to get up to go to the loo so I pop my drain in my special Drain Dollies drain bag and head in. I'm so glad I have my own room.

20.00 Chris arrives. I'm so relieved to see him. He brings me more food - yay for hospital grapes! The children are at his mum's so I know he cant stay long.

21.30 Chris heads off and I ask for more painkillers. I'm given oramorph but it doesn't agree with me and soon I'm feeling very sickly. I keep drinking water to take the nasty feeling away. My obs are checked and all is well. Although I've slept so much in the recovery are that I'm wide awake.

02:00 After a few toilet trips,more obs and pain killers and a lot of TV I finally turn my light off and head off to sleep.

What Happens During a Breast MRI Scan?

I arrive at the hospital 15 minutes early as requested. I check in at reception and I'm given a form to complete. The form asks lots of questions about previous surgery and any metal work I have in my body. I do have a metal plate in my left wrist but we already know from the mid consultation phonecall that it's not an issue for this scan.

Almost immediately I'm called through, and I'm led to a changing area. I don the hospital gown that I have become so accustomed to over the past 4 months. I'm wearing jeans on my bottom half but obviously there's metal buttons and zips on them so very cleverly I brought a pair of pyjama bottoms with me to protect my modesty whilst in 'the tube'. 

Once I'm changed I head back out. The radiology nurse puts me at ease. She passes me a key and I pop all of my things in to a locker. Next job is to have my cannula inserted. Everything is explained, I'll have a scan first then a special dye will be injected through the cannula and I'll be scanned again.

The dye will help any potentially cancerous breast tissue show up more clearly. Cancers need an increased blood supply in order to grow so on a breast MRI scan, the contrast tends to become more concentrated where there is cancer growth. These usually show up as white areas on an otherwise dark background.

The MRI room is huge. I'm told to lie on my front on the 'bed' with my boobs in the holes. Easier said than done. I put all my weight on the pillow in front of me, the pillows fold and collapse and I nearly topple. Once in place, boobs hanging, the radiologist turns a dial on the side and my breasts are clamped into place. She puts a wedge at my knees so my legs are resting against it, the bottom of my feet facing upwards towards to the top of the scanner. She tells me this will help my back.  

Picture me, laying flat on my tummy, arms outstretched in front of me like superwoman. I don't feel like superwoman but maybe I will once I've won my fight.

The headphones are placed on to my ears and the bed moves me head first in to the scanner. Once I'm in place, the radiologist appears at the other end of the tube. Facing me she attaches a long spiral tube in to my cannula. It looks like the cable from an old fashioned phone. It's in. The radiologist reminds me it's going to be very noisy and she leaves me on my own.

The music starts but the MRI machine is so loud I can hardly hear it. So many different noises, loud clicking, alarm sounds... all whilst I'm trying to stay calm and still.

I focus on staying still. Big mistake. The moment you think about staying still, really concentrate on it, you become paranoid about moving. So then I'm thinking I have to keep my chest still... but how... do I stop breathing? Immediately my heart starts pounding with panic - Oh God! Now I'm breathing really fast, my chest must be going up and down so much. Shit! Be calm, be calm. Listen to the music. I relax again, breathing slows. I zone out from the noise. 

The music was ok... Take That, A Little Less Conversation, then wait... what? Is that Eamon? The song F*ck It (I Don't Want You Back) is on? It plays for about 40 seconds before it's skipped on to be replaced by Enrique Iglesias. I picture the panic as the radiologist's Spotify played the inappropriate song. I chuckle to myself... which makes me panic about moving again... my heart goes again and I cant control my breathing. God this is so hard! Keep still woman!

After a what feels like forever, there is silence. A voice comes through the headphones, "Dye injection in 10 seconds." My right hand lurches as it goes in. It's a strange feeling, a whoosh of cold at first but then slowly I can almost feel it going round my body. It makes me feel warm. My hand tingles, arms still stretched out in front of me, above my head.

My shoulders are aching now. I cant wait to move my head, my neck, my arms. The noise intensifies again. I've been in this awful position for at least half an hour. 

Finally it's over. The nurse returns. I tell her my heart was pounding and I was panicking that my breathing was jiggling my boobs. She laughs and tells me I did really well. I grab my things from the locker and we head in to the blood room again so she can remove the cannula.

It's over with. I head back to the car with a very flushed face. I giggle like I'm drunk, I'm so tired and I yawn all the way home. Let's just hope the results show my right boob is clear. 

*Fingers Crossed*

More waiting.

Did you know?
To enable a clear and successful MRI screening you need to be between 6-12 days out from the start of your last period. 

Getting What I Want

Today we headed back to the hospital to meet the new consultant. We waited as usual but today I didn't have the nervous feeling in my tummy. I was back in fighting mode.

"Leanne"

My breast nurse calls, I confirm my details and head in. Mr M introduces himself, shakes my hands. "I know you don't know me," he says, "but I know everything about you and your journey. I am part of the MDT (multi disciplinary team) where we discuss your case each week. I know that you have had a pretty rough journey so far and things just keep getting worse for you." He explains that Tracy my breast nurse has advised that since the very start I had wanted a bilateral (two boobs) mastectomy then goes onto explain he is willing to listen but there are procedures that would need to be followed.

"Actually," I say. "I have done a bit of a 360 on that for now." I explain how I've researched A LOT and actually I am willing to go down the silicone route initially and see how it goes. I have already been referred to the psychologist about the risk reducing surgery but it is definitely the route I want to go down eventually.  He agrees that I should have the diseased beast done first because if I hate the cosmetic result and I've chosen to remove my 'healthy' breast then I may regret it forever.

I run through my questions and he is straight to the point answering every one with complete raw honesty. He looks me in the eye permanently, I try and do the same but that always makes me feel uneasy - like I'm in some kind of non blinking staring competition! He seems blunt and at first I don't know if I love him or hate him!

I explain how I am completely 100% convinced there is something going on in my right breast. He says he gets it, my instincts have been completely correct throughout and that combined with the false 'clear' ultrasound and mammogram on the left breast, he would feel the same. I ask about an MRI. He tells me he believes it's unnecessary. I ask again "Can it be done just to confirm? Otherwise I will always be in a constant state of panic about it."

"Yes, I'd be happy to refer you just for piece of mind."

Relief.

I then point out that I have metal work in my wrist so can I even have an MRI anyway?! Good question. Mr H doesn't know but he'll find out. I'm told that MRI scans can usually show a false positive result so having the scan would potentially mean the operation booked for 8th February may need to be postponed.

I look at Mr H but he's picked up his mobile and appears to be texting! What the hell!? No wait, he's calling someone - the radiology team. He explains my diagnosis, that I need an MRI but I have the plate in my wrist. He asks me dates from that op. Then I hear "Great news, thanks."

Wow, this guy gets shit done!! Any other doctor would have dictated a letter, had his secretary mail it over and Id have waited a week to find out if I could even have the scan. It was at that moment I decided I really liked the guy. He also agreed to recommend me for gene testing too. Brilliant.

He lets me take away a copy of my histology report and my nurse runs me through everything from the last surgery properly. She tells me that I am completely within my rights to decide which surgeon I want to perform my mastectomy. I ask who she would choose and she eyeballs the door that we have come from. I tell her I want him to do it - Mr M - definitely.

I leave the hospital for the first time feeling confident. Finally I'm getting somewhere.

By the time we get home the phone is ringing. It's my breast nurse - she needs to know the start date of my last period. Luckily I track my dates on the Clue app on my phone so I tell her exactly when it was - 18th January. She lets out a sigh and says she'll come back to me.

By 4pm the radiologist has called. They can fit me in on Saturday morning. That was fast!

Decisions

So having left my last appointment yesterday feeling very upset and angry I decided to go about researching everything myself.

At this point I am adamant I still want a double (bilateral) mastectomy with DIEP flap reconstruction. DIEP reconstruction is where a flap of skin and fat (no muscle) is taken from the tummy area and used to form a new boob. The skin and fat are taken from between the belly button and the groin along with the artery and veins. It is called DIEP because Deep blood vessels called the Inferior Epigastric Perforators are used.

There are so many other different flap options but this is the one I wanted because it only takes fat and skin, not muscle. The back flap (LD) operation that MR H had offered me would use muscle and the thought of that just made me feel sick. Besides,I defo had enough fat to make a pair of GG's on my tummy!

I joined a few faceboook groups for women suffering with breast cancer and asked lots of different questions.
I called Macmillan and asked them some questions too -mainly about DIEP flap surgery. So here's what I learnt:

- Unless you have the BRAC gene you are unlikely to be offered a bilateral mastectomy in the UK if only one breast is affected but you can fight for it.
- If you choose to fight for a bilateral mastectomy you will first need to be referred to a psychologist - likely delaying your operation.
- Gene testing on the NHS involves your consultant writing a letter to the lab recommending you for testing. They may not accept you if you do not meet the criteria.
- In the US you are automatically offered both a bilateral mastectomy and a hysterectomy if you have the gene.
- When you have radiotherapy it tightens your skin so any reconstruction will be affected and it's likely that further surgery will be needed.
- Not all reconstruction operations are available at all hospitals. I would need to be referred to another if I want to have the DIEP.
- You can only have DIEP flap surgery once. So if you have a unilateral mastectomy (just one boob) and you need another later down the line then you cannot have anymore tissue taken from your tummy.

So where do I stand now? Yesterday was horrendous but I couldn't just leave it at that. I'd have to get my own answers.

Having asked advice in many discussion groups, spoken to Macmillan team on the phone (who were absolutely fantastic) and having done my own research including contacting private hospitals for advice, I have decided that I am willing to run with the unilateral mastectomy with the expander and silicone implant. I will await the result of the histology and if  Im happy with the result of the implant and once any additional treatment is complete THEN I will proceed to have the risk reducing surgery on the right.

For peace of mind I want to request an MRI to be completely sure that there is no disease on the right and I also want to push for the genetic testing to see the risk for me and for my daughter in years to come.

I call my breast nurse and request an appointment with a different consultant - not Mr H. She agrees to book me in..

Two hours later I'm happy, I have an appointment on Tuesday to discuss everything, this time with the hospitals Lead Clinician for Breast Services.

I have a list of questions at the ready!

Central Excision Results Day

Today was the worst appointment of my journey so far. Not because of the news or the results, just because I was really unhappy with the way I was treated.

As usual I felt sick in the pit of my stomach as we traveled to the hospital. The waiting room is packed, we take the last two seats. Everyone looks so desperate in here. I scan the room and hope that everyone else is just there for scans and their journey can end today with a clear result.

We wait anxiously for over an hour in the waiting room. My heart palpitating at a whole new level. I cross my fingers as I wait. I pray that the margins have come back clear and no more surgery is required.

"Leanne Nash"

Oh god it's time. The nurse asks for my date of birth and I real it off as usual. My whole bosy is pulsing with nerves.

When I enter the room I'm surprised that my regular consultant, Mrs S is away and Tracy my regular breast nurse isn't there either. Mr H introduces himself by name, not title. There's something I dislike about him but I cant put my finger on it. He asks me if I've had any pain and I explain how I've been feeling. "Right, first things first, lets take a look - is that ok?" I head behind the curtain and do the standard top half strip. Gown on.

He looks at the scar, says it's healing well. Then asks if he can have a look at my right breast. I agree. He's happy that they are looking similar in size. "Ok, get dressed." I feel calmer, maybe it's good news if he's checking the size match - hopefully no more surgery.

I put my clothes back on and sit back down.

"So we have the results back from your central excision. There was DCIS found in the margins so you will need to have a mastectomy with immediate reconstruction." He refers to the DCIS as pre-cancer and I feel anger in the pit of my tummy.

Listen mate, I think to myself, I can tell you this is NOT pre-cancer. My lovely Macmillan nurse has said the same. It is very much breast cancer, I'm just 'lucky' it has been caught early enough for it not to have spread. I think back to the pre-cancerous cells that were found on a regular smear test - I wasn't told I needed a hysterectomy was I?? If it's not cancer then why the actual hell are you proposing to chop my boob off!?

He continues... "We will insert an expander first then later replace with silicone  I can do that for you on 8th February. Now, it wont look the same as before, it wont feel the same as before but we hope to give you a fair result. Any questions?"

Fair? What the hell is that supposed to mean? None of this is fair.

I nodded as he spoke but inside I was dying. I had hoped with all my heart that it would not come to this. I asked him about the margins and he explained that all edges bar one were positive and the one clear margin was only 1mm.

All along, deep down, I've known it would come to this... a mastectomy. And having had this in the back of my head, I had made a decision that when/if it did happen,  I would like to opt for a bilateral mastectomy. Take both away. I'd said that backin December as soon as I got the initial diagnosis. If only I'd pushed for it.

I tell him I want to have a double mastectomy rather than just the left. He dismisses me, tells me that it's not an option. They would never remove a healthy breast. I explain that I am still worried there is something wrong in the right side. He dismisses me again and tells me that all scans were clear. I remind him the scans were clear on the diseased breast too. "Yes, but you had the discharge and you don't on the right."

IT'S MY GODDAMN BODY!!!!! WHY CANT I JUST MAKE MY OWN DECISION?!

Soon enough we are exiting the room. My blood is boiling. My head is all over the place and we are lead by the nurse to what I now call 'the room of doom' - a small private room where anyone newly diagnosed is taken to so they can take everything in and sit with the Macmillan nurse to ask questions. We're left alone while the nurse goes to find more information to hand to us.

I begin to cry at the enormity of what we've just been told and Chris holds my hand. We hug.

But then I stop, the clouds in my head parting for a moment. I wonder why I've just been TOLD what was happening instead of discussing all of the reconstruction options that I've read about. Then I get angry again. I don't even know who this man is, what's his job? I don't want him to do my operation. Is he a doctor? A consultant? What?

I had wanted a mastectomy from the start but I was persuaded that that was completely unnecessary and that a 'breast conserving' central excision would be best for me but if later down the line I wanted a risk reducing mastectomy then that would be fine, I could do that, but that was obviously a lie.

When the nurse returns I tell her again, I'd really like to opt for a double mastectomy but she tells me if that's really what I want then I would have to have the risk reducing mastectomy later down the line. The left mastectomy is their priority and if I want the right gone too then I'll need to wait months and months and see a psychologist so he can confirm that I am aware of the consequences of my actions! Wow.

I ask her to explain the reasons why and this time she explains that if I was to catch an infection on the right side from the risk reducing surgery and then an invasive cancer was to be found on the left then I could potentially be putting myself at risk. An infection due to an unnecessary operation could potentially prevent me from having life saving treatment if invasive cancer is discovered. A lot of ifs!

Next I ask about the different flap reconstruction options. I really don't want silicone - especially if I'm only having it in one side. I picture myself in my 80s with one perky boob on the left and one saggy dog ear on the right - imagine the sight - I'd look like a bloody Darlek!!

The nurse hands me a Breast Cancer Care booklet with details of all of the reconstruction options available. I tell her my feelings on silicone and that I don't really want to have an implant. Ideally I'd prefer a DIEP flap reconstruction where they take fat from your tummy and use that to reconstruct a new breast. She tells me they don't do that at this hospital. I explain my feelings and she heads back in to see Mr H. She said "Mr H says that's a shame because he thinks your the perfect candidate for silicone, he says if you don't want implants then he could do a back flap here at this hospital." No thanks!! I'm fuming that these options weren't given to me 20 minutes ago when I was with him myself. She tells me to take the booklet home and have a read then call back if I still want to discuss my options.

Chris asks about Mrs S performing the surgery but apparently shes not back until the end of the month and they don't want to delay. Hmmm, if it's ONLY pre-cancer then why the urgency. I hate this day. I feel like the nurse just wants us to leave. Chris probes again "Who is Mr H? Is he any good?" The nurse says he's a lovely man. Chris replies "I don't care how nice he is!Is he any good with a knife and fork?" I smirk. The nurse tells us all of the surgeons are fantastic.

I have another question  - no one has told me the results of my hormone test. Again the nurse heads back in to Mr H. "Oh he didn't know you hadn't been told, sorry. You're Oestrogen positive 7/8. I have no idea what this means and it's not explained but my heart is pounding with all of my emotions.

Upset, sadness and anger fill me.

We leave with the mastectomy info sheet and sentinal node bipsy sheet and the reconstruction option booklet.

This is not over. I am so disappointed.

Central Excision Day

I feel calm. Don't get me wrong, I've cried. I'm desperately sad to loose my nipple. I'm literally grieving for it. But the show must go on.

Today is the day of my central excision. We head in to the hospital - early this time. We arrive at 7.30am. I haven't eaten since midnight. I'm thirsty.

After half an hour the Macmillan nurse visits. She talks to me about the procedure and some exercises to do afterwards. There's some confusion over whether I am having lymph nodes taken. I was told I wasn't but the nurses seem to think I am. I know from my research that this would mean having a dye injected in to me so my surgery wouldn't be until the afternoon if that was the case. I'm secretly happy - I've had this horrible nagging pain under my arm for months and I have convinced myself it's something sinister - at least this would confirm it either way.

The anaesthetist arrives and calls me in to a side room. He asks me to confirm my name, date of birth and the operation I'm having. He runs through his list of questions - all good - and I return to the waiting room.

After an hour and a half, I see my consultant arrive. She calls another patient in first. I'm next - second on the list. Mrs S tells me they definitely aren't taking any nodes. She reminds me she is going in blind on this op as the cancerous cells haven't shown up on any scans. She will do her best to take it all away and get the clear margins I desperately want.

A clear margin means that no cancer cells are seen at the outer edge of the tissue removed. The tissue removed is usually sliced in to many pieces so the histology gives a very clear report on exactly what is removed.

Before I know it I'm in my gown and socks. A nurse walks me to the theatre. I'm hooked up to all the monitors again, cannula in.

I look at the clock - 10.10am. By 10.14 I'm drifting off....

---

When I start to come round in recovery I am in so much pain. I'm still drowsy but the pain is so intense that I can hear myself groaning. The nurse asks me about my pain and administers me with morphine. I'm unaware that anyone else is in the recovery area.

Within 10 minutes the pain looses its edge. I'm so thirsty and drink 2 glasses of water. That's when I realise there's about 4 or 5 other patients that have been listening to me groan with the pain. I'm mortified.

I'm sore but I cant wait to head home. I fall sleep for a few hours and when I awake I'm offered the famous hospital toast. The greastest toast ever. That perks me right up and before I know it, it's 4pm and I'm heading home.

The car journey is excruciating.  We really need to get a car with better suspension.I'm signed off work for two weeks to recover. Hopefully we've managed to rid all of this horrible disease from my body.

The wait continues.

Microductectomy Results Day - I Have Cancer

I've remained positive but inside I've been dreading today. We drive to the hospital and my tummy flutters. I try and breath deeply to calm my nerves. By the time I sit down in the waiting room my heart is pounding so fast that I feel like it is about to burst out of my rib cage. The wait feels like an age. Until eventually....

"Leanne Nash"

I just about get my date of birth out and enter the consultation room. This time there is an extra person in the room - another nurse. My brain goes in to overdrive. I sit down and I am asked how I am, hows the pain? I don't feel like I'm really there, I just feel odd. I'm asked to go behind the curtain and put the gown on. The consultant removes the steri-strips and checks the wound. Everything looks good so I get dressed and sit down again.

Mrs S, my consultant, explains that they did find a papilloma which was likely what was causing the bleeding. However, while she was removing the duct she had been able to feel that the surrounding ducts weren't right. They didn't feel as they should. She explained that she had tried to remove the areas that felt odd but they went deeper and deeper she had to stop. All of the areas she had removed had been sent away for screening and the results showed that there was a cancer present. A very early form of cancer known as DCIS - ductal carcinoma in situ. She was very apologetic - I think most likely because they were convinced I was healthy and it was me that had  to push for the microductectomy in the first place. Immediately the additional nurse was introduced, she was a Macmillan nurse specialising in breast cancer.

Time stood still for a minute. I don't think I spoke. The nurse left to get me some water.

It was explained that the next step would be for me to have a mammogram and another ultrasound to see if the DCIS was visible then we would need to go back and see her again later today. She thought that the best way to proceed would be to perform a central excision. A large incision would be made across my left breast. They would aim to remove all of the DCIS but they would need to remove my nipple.

I left the consultants room and began to cry. I honestly think the thought of losing my nipple had hit me harder than hearing the word cancer. That may seem ridiculous but right then in that moment that was what mattered to me. My femininity. It doesn't matter whats going on in the inside as long as you look and feel the same on the outside.

I were ushered in to a side room and handed some tissues. The Macmillan nurse came in with lots of booklets for us to read. I told her, "I honestly just want them to take both boobs". I didn't want to risk my life. We talked for a while and she explained that having a bilateral mastectomy was a huge decision. I'd have to have a reconstruction with silicone implants. The silicone implants wouldn't feel like part of my body, Id have no feeling and they'd feel very cold.

I asked more questions about the results. The consultant had removed a 10cm x 1cm area and a 2cm x 1cm area. All of which came back as high grade DCIS. Luckily DCIS is completely contained within the ducts of the breast and has not yet got the ability to spread outside. As far as we know, my cancer is contained.

DCIS is graded in three ways based on how the cells look under a microscope. A system is used to classify the cancer cells according to how different they are to normal breast cells:

Macmillan Cancer Support: DCIS Grading

The nurse asks about whether we will tell the children. I explain that because of Dad and the association that his death has with the word cancer, we would not tell them. She agrees its probably best. We're eventually left alone to wait for my name to be called for the mammogram. We hug each other tightly.

The mammogram was horrible. I was still healing from the operation and having my boobs squished in a vice was the last thing I needed. As I stood there top off, boob flattened, I realised that I just had to get on with it. I would fight this - no matter what.

A couple of hours later we were back in with the specialist. She explained that nothing at all was visible on the scan, there was no visible calcification. Mrs S explained that because of this she would need to go in blind but the only option would be for me to have the central excision. Ideally she would have liked to have had an MRI scan done but because of my recent surgery the scan would only show inflamed areas where the previous operation had been performed. You have to wait 6 weeks post surgery to get a clear view and she explained we didn't have time to wait. I'm told it is likely that I will need radiotherapy once I'm recovered, just to ensure that all of the bad cells are eradicated.

I asked how long I was likely to have had this growing inside me and she explained because it had reached high grade it certainly would have been a number of years. I explained my concern about having pain under my arm but she thinks it's likely just down to the surgery I've had.

I was given a folder confirming my diagnosis "left breast cancer". My operation will be performed on 8th January 2018.

As we leave the hospital I see the messages and missed calls from my mum. How the hell am I supposed to tell her I have cancer so soon after losing Dad?

FNA Results & Core Biopsy

After 9 agonising days, we fearfully head back to the hospital to hear the results. This time the waiting room is busy. It is filled with women and their 'support partners' - sisters, husbands, daughters. Again no one interacts. Everyone's heart pounding, hoping. We wait for 40 minutes. During that time my anxiety is through the roof, my tummy flutters and my heart is racing so fast I think it could explode.

"Leanne"

A nurse calls us. "Can I just check your date of birth?" I reel it off, my voice slightly broken by the fear. We are led in to the consultation room and sit down.

Mrs S, the specialist, shakes our hands. The results have come back. The FNA results were inconclusive but the swab from the bloody discharge has come back as 'suspicious'. I'll need to have a core biopsy. This is where a larger, hollow needle is used to take tissue - rather than just cells as in the FNA.

I'm advised that this can take place later on today if I have time to wait, the specialist again says she is convinced I just have a papilloma but because of the discharge she wants to investigate further. I head over to the coffee shop for an hour while we wait for my appointment.

I feel calm again. I'm not in the clear but at least I don't have to go away and wait for days again. I Google 'core biopsy' on my phone. I'll be given a local anesthetic this time so at least I won't feel anything.

An hour later I head back. I'm given a gown (it will not defeat me this time!) and I head to the changing room. Again there is another woman there waiting. I desperately want to speak to her, share my story, ask hers... but I cant. It's like my voice has gone.

Eventually Im called in to the ultrasound room - the same one as before. The curtain is pulled across and the nurse sent to the fridge to get the lidocaine. The radiologists asks me to remove my gown and lie on my right side with my left arm above my head. It's uncomfortable and I dread that I have to stay there... still... for a long period.

The local anaesthetic is injected in various places to numb the area. She apologies because the area is so close to my nipple and that is the most sensitive part. She keeps going around my breast but at one point she has to call for a superior to come in, one of the needles had gone in to the duct where the blood was and so a new aneasthetic needle was required.

The radiologist was really good at informing me what was happening at each stage however at the time there were so many needles that I thought that the biopsy had begun. Unfortunately that was only the anaesthetic! Eventually, I was numb and the actual biopsy could begin. A small cut was made in my skin and a big needle inserted. When the sample is being taken it's almost like a gun. There's a horrible loud noise and then the sample of tissue is grabbed. This was done 3 or 4 times over the course of hour appointment, with the senior radiologist was assisting and advising on how to best get to the areas that needed sampling. It wasn't pleasant but you just have to deal with it don't you.

After the biopsy the radiologist said "oh I forgot to tell you about this bit, I'm just going to put a titanium marker in place. Ok?" I was so traumatised from the biopsy itself that I didn't really have the chance to question it. I hated that it was just sprung upon me without any real detail and I had no time to think about it before it was done. It made me panic because in my head I felt as though they could see something bad and had to mark it up. I've since found out its so they know where they took the biopsy from so they can go back and remove anything nasty and locate it quickly

Afterwards a small dressing was applied where the incision had been made and I was sent home. The bumpy car journey was as awful as the last time and once the local anaesthetic had worn off it was really achey. Over the next few hours awful bruising began to appear. But for now life goes on, we just need to wait. Again.

First Time at the Breast Clinic

A few days later I received a call from the breast clinic and the date was booked. 17th October 7.00pm.

When the confirmation letter arrived it said that I could be at the hospital for a number of hours. They try to work on a 'one stop shop' basis where you see a consultant and have all necessary diagnostic tests in one go - a mammogram, an ultrasound and any biopsies.

I was so nervous heading in to the hospital. It was relatively quiet, probably due to the evening appointment time, but at 35 I was the youngest patient in there.

Eventually I was called into meet the specialist, I was relieved that it was a woman. Id been thinking about whether it would be quite a lot, I guess deep down I was thinking that a woman would understand the importance of femininity, what it meant to be a woman and just, well, know... you know? There was a nurse there too.

I sat down with my husband and explained my symptoms to her... the lump...the blood. I was then asked to remove all of my top half clothing and pop a gown on behind the curtain. The specialist examined the right 'good' breast first before moving on to the left. There was some dried blood on my nipple - evidence of something untoward. She tweeked my nipple to see if more came out - it did. The nurse passed over what looked like a clear glass slide - you know the type you would put stuff on at school before investigating under the microscope. It was put on top of my nipple and the dark brown blood smeared across it to be sent for testing. She feels the lump that I had felt and marks me with an 'X' with her black marker pen.

I keep the gown on, my clothes in a hospital plastic bag and I'm told to go and wait in a separate 'female only' waiting room. Apparently I am only having an ultrasound, a mammogram is not necessary. I sit down and stare at the TV in the waiting area. There is another woman there - we do not speak. It's almost as if we are gripped by fear and our voices gone. We smile but there are no words.

She's called first. I'm alone.

I get up to get a cup of water but the ties on my gown have somehow been caught on the arm of my chair. In some kind of slapstick comedy moment, my gown unties as I stand and I expose my whole top half. Thank god there is no one else here! I laugh to myself and that puts me at ease.

20 minutes later the door of the ultrasound room opens and I know I'm next. My heart rate starts to build again as I wait for my name to be called.

"Leanne"

I carefully stand, ensuring there is no gown/chair entrapment and walk through.

The room is dark, its divided by another curtain that blocks the door. I'm asked to remove the gown and lay down on the bed. The gel is squirted on to my breast, the screen turned out of eye shot and the scan begins. It's tense and I try to scan the radiologists face, eye movements, anything for clues. She tells me she can see something but it's likely just to be a harmless cyst. She want's to do an FNA (fine needle aspiration). This is where the radiologist uses a fine needle and syringe to take a sample of cells to be analysed under a microscope. I knew what this was and what to expect as my Dad had been through this during his diagnosis.

I'm wiped with a sterile wipe and using the scanner, the sonographer guides the needles in to the suspicious areas. As she inserts the needle in to my duct, the blood is released out in to her needle. She decides to drain as much of it as she can. I have no clues as to whether anything is spotted but it is over.

It hurts a little and my breast is really tender. I am told to get dressed again and go back to the original waiting area to see the specialist again.

We are asked back in. The specialist tells me she is convinced that my symptoms are being caused by an intraductal papilloma. They will send everything off and I'll be sent a further appointment to come back in for my results.

The car ride home was horrible. You don't realise how uneven and bumpy the roads are and how bad your suspension is until you are in pain.

Now I just need to wait. And hope.

So I found a lump...

Well 2017 has been traumatic to say the least. My Dad was diagnosed with cancer on 1st September and sadly just 8 weeks later on 1st November he was taken from us by this disgusting disease.

During Dad's illness and whilst my husband was away on a trip... I found a lump. That same day - Sunday 8th October -  I discovered that the spots of blood that had been appearing on my pyjama top for a few months had actually been coming from my nipple.

Panic.

The following day, on my mums birthday,  I called the doctors as soon as they opened and was offered a same day appointment with the nurse. The nurse felt my breast and said she would send me as an urgent referral to the breast clinic. She advised that I would receive an appointment within 2 weeks.

As I left the surgery, tears streamed down my face. I called my husband in Belgium and told him the news. He calmed me down and I headed off to work.

Unfortunately by the time I sat down at my desk my tears would not stop. I headed to the ladies to try and sort myself out but I just felt sick and couldn't catch my breath. I was sent home.

Waiting for the breast clinic appointment to come through felt like forever, although that was just the start of the seemingly constant wait for the 'next step'.