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 Day

I arrive at the hospital for 12.30pm. Today is microductectomy day. I'm just a day case but I've brought my overnight bag just in case.

The day case waiting room is interesting. Most patients appear to be hear for cataract operations. I watch them get called one by one to see the eye specialist and giggle as each of them appears with a giant black arrow drawn on their face, each pointing to their 'bad' eye. It takes a lot not to laugh out loud and I smirk to myself as I see the mass of 'drawn on' pensioners in front of me.

Eventually I am called in to see the anaesthetist. He seems quite young but he puts me at ease. I'm asked to confirm my name, date of birth and the type of operation I am having done today. He asks about my medical history and I tell him about the DVT I had when I was pregnant with my daughter 7 years ago. He explains I'll need to wear my DVT socks for a few extra days after the operation to be safe. Finally he asks if how I usually feel when I come round from anaesthetic (I've had quite a few operations in the past thanks to wrist injuries and a difficult nose, so I'm a pro). I tell him I just usually feel hungry. We laugh and I return to the waiting room.

20 minutes later the consultant arrives and takes me through the operation again. I'm first on her surgery list so she'll see me soon. I get changed into my gown, DVT socks and the fake NHS totes toastie style socks that I was given. I don my dressing gown and before I know it, the nurse is walking me down to theatre.

In the theatre I am met my the anaesthetist from earlier and he introduces me to the rest of the team. We chat as they prepare me, inserting my canular, putting chest monitor probes on me and the blood pressure monitor. A few minutes later I'm wearing an oxygen mask (vanilla flavoured oxygen apparently!) and I'm put to sleep.

--

I wake up in recovery with one other lady next to me. The nurse checks my blood pressure and brings me a glass of water. She offers me a cup of tea and a piece of toast. I accept the toast - I'm hungry as expected! The toast is THE most amazing toast - salted butter glistens and melts on the surface. It's amazing. I have another glass of water and I need the loo. The nurse helps me up, she tells me I can go myself but under no circumstances can I lock the door.

Within an hour and a half my husabnd arrives and we head home with a bag of painkillers. The drive home is the worst one yet, every single stone in the road makes the car jump and sends pain through my body. It's definitely time for bed.

Not Prepared to Wait

So I couldn't just leave it. If I learned anything from Dad's cancer journey it's to always trust your instincts and to never take no for an answer when it comes to your health.

On Friday I made the decision to call the breast nurses at the hospital. I told them I was really unhappy about being left for 6 weeks. I explained that whilst I completely understood that my biopsies had come back benign, I still had this horrible 'suspicious' bloody substance coming out of me and I really wasn't prepared to wait until the week before Christmas for another scan.

The nurse was lovely and booked me in to see the consultant again today.

We arrived at the hospital but I didn't feel as nervous today. I was on a mission. Today I would fight.

"Leanne Nash"

Date of birth confirmed, we headed in to see the consultant.

"So we aren't supposed to see you for 6 weeks? What are you doing here?" she said in a rather annoyed tone.

I reiterated my concerns to her about not being left for 6 weeks and she asked me to go behind the curtain so she could examine me again. The nurse always comes with me behind the curtain. I told her "I just know my own body and something isn't right." She looked back at me in sympathy and smiled.

The consultant came through and asked me to raise my arm. She felt my breast and pinched either side of nipple. A lot of the dark brown blood came out.  She stepped back and asked me to get dressed again. The nurse handed me some tissues to clean myself up.

Once I was dressed I returned to my seat.

"I think what you have is a papilloma which most people just live with, they aren't harmful, but since you have the discharge I can offer you a microductectomy." She ran through all of the risks involved, the loss of sensation I'd feel, the scarring I'd have. I really felt as though she was trying to put me off having the operation. I just kept nodding "That's fine." I knew I was making the right decision.

I asked a few questions, each time it was as though she was trying to make me feel stupid for asking it. She was clearly still annoyed we had come here only a few days later and not waited the 6 weeks. Finally my husband asked, "What would have happened if we had waited the 6 weeks but Leanne was still bleeding like that?" She replied that she would have booked me in for the operation anyway.

We left feeling a sense of achievement. We had shaved 5 weeks off my waiting time. My operation is booked in for 7th December but I'll need to come back on 27th November for my pre op.

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.