Thursday 10 May 2018

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.

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!

Tuesday 8 May 2018

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

Tuesday 1 May 2018

Can I still have a massage if I've had cancer?

There seems to be a lot of confusion over whether or not you are allowed to have massages if you have cancer, are going through chemo or have had cancer and had lymph node removal. Someone had told me that massages can spread cancer around the body (although there is no evidence medical evidence to suggest this), another told me I couldn't have any massage at all anywhere on my body in case of lymphadema.

In fact so many people had told me I wasn't allowed a massage following my surgery so when I was approached to review a fantastic Balance and Calm Signature Treatment in partnership with Wellness for Cancer™ at The Midland Hotel Spa in Manchester, I jumped at the chance.

Prior to the spa day and treatment one of the therapists contacted me by phone for an initial consultation to go through all of my health concerns and ensure the treatment was tailored specifically to my needs. Knowing that I had spoken to my therapist before the session really put me at ease. The spa was fully aware of exactly where I was up to in terms of my illness so I couldn't wait to get there.

Treating my mother-in-law to a trip with me to the Spa we headed to The Midland Hotel. It's worth noting that you entrance The Spa at the side of the building.The first thing that hit me when we arrived was the amazing smell of aromatic oils. We headed down the beautiful winding staircase and were greeted by the reception team and shown around. The Spa has a gym, relaxation room, jacuzzi, pool, sauna, salt-infusion aromatherapy steam bath and an amazing lifestyle shower.

After being allocated a locker containing a robe, slippers and towel, we changed and headed to the pool area to relax before our treatments.

I spent most of my time in the pool and the jacuzzi however I was feeling a bit sniffly so thought I'd try the salt-infused aromatherapy steam room. It was fantastic for clearing it up. It's hot and dry but felt really good. To cool down, despite saying I wasn't going to get my hair wet I decided to head to the lifestyle shower. This is a huge shower that stimulates your circulatory system. It feels like being caught in a tropical storm - very invigorating!

At 1 o'clock we headed back to the reception area. I was greeted by Hayley my lovely therapist and we headed to the treatment room. The place is huge! The room was lovely and warm and I was told to take a seat so we could run through some further health questions. I explained that I'd had a unilateral mastectomy and sentinal lymphnode removal. Hayley explained that because of the few lymphnodes I'd had taken away she would adjust the treatment and avoid massaging in that direction. She explained each part of the Balance and Calm Treatment to me so I knew what to expect.

I was left in the treatment room to get changed and hop on to the heated massage table. Unfortunately I was really uncomfortable as I lay face down because of my expander implant but as soon as Hayley returned I let her know and she arranged some towels underneath my shoulders to take the pressure off and the first part of the treatment could begin.

To start the Balance & Calm Treatment I was given an amazing full body massage (back, arm & hand and legs & feet) using ESPA Nourishing Body Oil. I can not tell you how relaxing this was. The best massage I've ever had and I certainly needed it. All of the tightness is my muscles seemed to disappear and it seemed to go on forever, I almost drifted off I was so relaxed. Once the massage was complete I needed to move on to my back. Hayley held up the towel to protect my modestly so I could lie down ready for the next phase of the treatment, the facial.

I have to admit, I've never had a facial at a spa before - I usually spend my money on massages. I was surprised by how relaxing the facial was as I am usually quite funny about people touching my face! After completing the facial cleanse and massage with ESPA Tri Active Night Booster, an ESPA Overnight Hydration Therapy Mask was left on my face while my therapist moved on to a head massage.

Wow! I cannot tell you how amazing the head massage was. Hayley used ESPA Pink Hair & Scalp Mask and advised me to leave this on my hair for as long as possible. Luckily I had a hair bobble with me so I tied my hair up for the journey home.

The Balance & Calm session was just perfect. Everything I needed to relax after what has been the most horrendous 6 months of my life. I was transported away from my every day worries and felt so calm and at ease. I can highly recommend the treatment, I will certainly be going back again. My skin was just glowing and my hair had a new lease of life.

I know when I had mentioned in some of my online support groups that I was having this treatment some of you were asking questions so I made sure to ask them on your behalf...

Can I still attend the spa day if I'm receiving active treatment - chemotherapy or radiotherapy?

Yes, it is ideal to come just before or close attending a treatment as this is generally when you may feel ‘well’ or be feeling less affected by the treatment or side effects.

What if I've had full lymphnode removal?

It is important for us to understand if Lymph nodes have been removed or radiated so we can adapt the treatment to suit. In some cases it may be better to you touch therapy such as Reiki rather than a traditional massage however every single Balance & Calm treatment is bespoke and tailored to each individual.

Can I use the sauna/steam rooms/jacuzzi if I've got or had cancer ?

It is not recommended to use the thermal facilities as the heat exposure may make you feel unwell but it is entirely at your discretion if you feel well enough.

Is there anything in the spa that should be avoided at the spa for certain patients?
We would not recommend to have a rasul experience and certainly no nail treatments that include any cuticle work to minimise the risk of infection.

If you have any other questions then be sure to ask in the comments below and I can get an answer for you.

After the treatments we headed to the relaxation room. It's divided in to 4 seperate areas, all very calming and dimly lit to help you just escape your everyday.

Feeling really relaxed from our treatments we headed to the 'Big Sleep' area first. There are three small beds tucked away in the corner. Such a great little area to close your eyes and continue to leave your stresses behind.

In the relaxation area there are a number of complimentary teas for you to drink. We took some tea and then I headed in to one of the 'Hanging Pods' to chill a bit more. There are 4 pods enclosed behind a voile curtain.

There is also two 'Time Out' areas where you can kick back and relax in that the spa can actually close off for groups if you book ahead and a 'Lounge Seating' space where you can relax in a sound cancelling egg shaped chairs.

I absolutely loved this room, the only non relaxing part was trying to get out of the hanging pod. Let's just say I had the grace of a baby elephant!

By 3pm we were getting really peckish so we headed to the dining area for our afternoon tea.

We were served THE most delicious treats. Sandwiches with delicious fillings, cakes to die for - a manadrin cake slice, jaffa cake chocolates and pistachio and pear crumble cake.

We were so full that we had to take the scones, jam and clotted cream home with us to eat later on.

It was truly scrumptious and the perfect end to the day.

We could have headed back to the spa for more time in pool and sauna rooms or the relaxation area but we decided to head home.

I cannot recommend the Midland Hotel Spa's 'Wellness For Cancer' spa day highly enough. I feel amazing. I wish that everyone going through this horrible breast cancer journey could experience this. I can't tell you the difference it has made to me. For the first time in weeks I feel like my anxiety has taken a step back and I've been able to take a step away from the everyday pains and worries that this horrible disease brings.

If you are interested in booking for yourself or a friend then there are a couple of options, you can either book the treatment on it's own or book a full spa day.

Balance & Calm Signature Treatment
The Balance and Calm experience combines a personalised consultation, mindful touch and breathing, tension releasing back massage, nourishing facial including skin analysis with a
scalp and hand massage to leave you feeling refreshed and rejuvenated, enveloping you in calm.
and a soothing facial.

85 minutes for £105

Wellness For Cancer Spa Day

* An 85 minute signature Balance & Calm treatment (as above)
* Either a light lunch or afternoon tea in the spa café
* Full use of the relaxation room, spa facilities and gym all day

Monday-Thursday £135pp
Friday-Sunday £155pp

Book online now

Disclosure: I attended the spa day free of charge in return for an honest review.