Personal Stories


A collection of interviews with and stories from

women who have been affected by breast

reconstruction


Our support groups

Personal Stories


A collection of interviews with and stories from

women who have been affected by breast

reconstruction


Our support groups

Personal Stories

Caroline

On the 22nd August 2013 I was diagnosed with Triple Negative Breast Cancer aged 31, with no family history of cancer this was the starting point for a very steep learning curve! The next month was a whirlwind of scans and hospital appointments. It was confirmed to me that my treatment route would be chemotherapy, a single mastectomy followed by radiotherapy. I was told that due to the radiotherapy I would not be able to have immediate reconstruction and that I could when I was ready discuss the options for reconstruction after the radiotherapy. I agreed to everything after-all my knowledge was limited and the Doctors were the ‘experts’.

My chemotherapy started on 20th September 2013 and I received 6 sessions of FEC. That took me through to the New Year.

On 14th February 2014 I was admitted as a day case for my mastectomy, I arrived at the hospital at 7am and was told I would be on the list to be first into theatre. I felt remarkably calm and happy for more progress and to be over another phase of the treatment. This for me was another step to being rid of this disease. I was home the same day and recovery from the operation continued without hiccup! Two weeks after surgery I received a follow up appointment with my Breast Consultant who was happy with the results from the mastectomy which showed clear margins and on all accounts we had ‘got it all’! I was advised I would receive an annual check-up but if I wanted to discuss reconstruction before February 2015 then I could phone up and change my check-up date.

Radiotherapy started and finished between April and May and I was discharged from the Oncology team.

As my chest healed and the scarring subsided I knew I wanted reconstruction, it was not that I didn’t like my scars in fact I was amazed at the neatness and was more than happy to show family and friends how amazing it was. However when I got ready for bed, looking down and being wonky I found it harder and harder. I wasn’t fussed and never have been bothered about my bra size or my cleavage but being wonky made things awkward. I felt restricted in the clothes I wanted to wear or being able to walk into high street lingerie shops and just pick up a bra in a certain size, pay and go home with it. In the summer I always enjoyed being in my garden with a strapless top on but not any more and I missed that on the odd day with the sun out this was not even an option. One bra shopping trip ended up with me virtually being pushed out of the way of the stand with mastectomy bras by a couple and the staff member as if I wasn’t meant to be looking at them and they weren’t for me, I wanted to run away!

So I rang the hospital and requested my annual check-up be earlier and they confirmed a date for December 2014. My Breast Consultant was more than happy to refer me and when I requested a referral be made to Miss Elaine Sassoon (Consultant Plastic & Reconstructive Surgeon) she supported this.

On the 11th February 2015 I had my first appointment with Miss Sassoon. During this appointment we discussed my previous treatment, the potential options available to me and also if I had a preference for reconstruction. At the time I wanted to hear her recommendations however if my own tissue was to be used I did not want my tummy used (DIEP) and preferred my buttocks or thighs (IGAP & PAP). Miss Sassoon then examined me it was agreed the only place I had enough tissue would be from my inner thighs they would need to use tissue from both thighs to make one breast. Her main concern was also that even using both thighs I would still be a much smaller cup size than I was previously. She estimated I was a D-cup on my right side and the best size they could make for the left would be a B-cup but more likely an A-cup. I would therefore then need a reduction on my right side to get more balance. I explained to her that my aim was not a specific cup size but just to have something and to no longer be wonky! We agreed that I would take some time to consider the option available to me and return back in 6 weeks with any questions and decision on next steps. At my second appointment I thought we would get straight into booking me in however Miss Sassoon wanted to check I really had considered the operation fully and the reduction in breast size. I would need to have one surgery for the breast reconstruction which would need two surgeons, it would take a full day and I would need a week in hospital for recovery. I would then have a second surgery for the reduction. Initially I was disappointed that it couldn’t all be done in one go however I soon realised this would be the best option for the new left breast to heal and then the right to be reduced to be as close of a ‘match’. The bombshell was then dropped that Miss Sassoon wanted me to go away and ‘research’ breasts online, my husband looked quite keen on this suggestion! She wanted me to look at pre-operative breast pictures of women who have elected for breast augmentation specifically those with smaller A and B cup sizes. I then had to print out those I ‘liked’ and return for a follow up appointment. I felt like this was yet another delay and all very time consuming. On 8th April 2015 we returned I was again examined and Miss Sassoon reviewed my printout of breasts from the internet, she asked what had made me chose the ones that I had (I decided it was those that still had a definite breast curve and shape) and we agreed that what I was thinking and liked would be possible. It was at this appointment Miss Sassoon listed me for the operation, I explained to Miss Sassoon that we had a long haul holiday booked for mid November 2015 and we would be travelling around Australia for a month, it was agreed that we had plenty of time to fit in the operation and to be recovered for the holiday. I was elated! It was confirmed the next correspondence I would receive would be for the pre-operative assessment and to be offered a date for reconstruction. It was now a case of sit and wait!

At all appointments with Miss Sassoon, Ruth Harcourt (Breast Reconstruction Nurse) was also there. Ruth is available to ask those questions that you sometimes don’t even realise you have and in general point you in the right direction. Also whilst in the waiting area a volunteer from Keeping Abreast was there, this was great as you can sit and ask any questions you may have or even just chat about other ‘stuff’ which all helps to pass the time and reduce any worrying thoughts or anxiety. I was also provided with the contact details of another lady who had the PAP operation previously for me to chat to and ask any questions.

I received ‘THE’ phone call on 9th July 2015 and was offered an admission date of 19th August 2015 and surgery would be the following day. I had a pre-op booked for 29th July and would also need CT angiogram of both lower limbs to check the arteries and blood flow. At last it was all going to happen! Well that was what I thought then I received a phone call on 17th August 2015 advising that they had needed to cancel my surgery as a ‘priority case’ had arisen. Now the logical part of my brain clearly understands this but I took the cancellation really hard and found it more difficult to deal with than I ever expected. Suddenly I realised just how important this reconstruction was for me and how much I wanted it. I spent a few days very tearful and upset much more so than when I was diagnosed at times I felt forgotten by the hospital and completely lost. I did however have a great contact with Keeping Abreast (Jane from our local Wymondham group) who was able to make me feel like she really understood and was there for me, thanks Jane! After lots of phone calls and negotiation I took the decision to cancel the reconstruction for the rest of the year. Time was getting closer to my ‘big trip’ and I wanted nothing to impede me having the best time and personally I felt 6 weeks between the operation and travelling was not going to be quite long enough. Miss Sassoon advised me I would be a priority for the New Year but I would need to wait a further 6 to 8 weeks after my holiday return due to the risk of DVTs.

On return from my holiday I received my new operation date 13th January 2016, whether it was because my first operation was cancelled or just my pessimistic mind I really felt that this date would also be cancelled. As we got closer the Junior Doctors strike took place and the hospitals in the region were all on red or black alerts cancelling non-essential operations. And as luck or bad luck would have it my reconstruction was cancelled for a second time. I took this one much better and within a day I had a new date to aim for the 29th January 2016. And this time I was sure it would be third time lucky!

At 3pm on 28th January 2016 I was admitted to NNUH in preparation for my reconstructive surgery the following day. I met with ward Doctors, the anaesthetist and Doctors from the Plastics team, Miss Sassoon visited me at about 7:30pm along with Mr Figus (the 2nd surgeon). They proceeded to draw all over me in the areas the tissue would be taken from and the area it would end up. I had the time to ask any further questions and then I was settled in for the night. Due to lack of space on the ward I did spend the night in the Day Procedure Unit which appeared to be in use as an ‘overflow’ area but this was fine with me. At 6am the Nurse took me to a ward for a shower and to get my hospital gown on, I was then told I had to remain in bed under a heat blanket set at 40 degrees, now I like it hot but that was quite a roasting heat! This was to open up all the blood flow in preparation for the operation. I received a few visits from the Plastics and Surgical team and at 08:00am a member of the surgical team came to get me and my journey to theatre began. According to my charts I was ‘under’ at 08:20am and I came round in the Theatre Recovery at 05:30pm it was whilst in recovery I had the first peek of my new left breast. Due to Nursing staff needing to check the blood flow so frequently (every 15-20mins to begin with) there are no dressings or big bandages so you can see straight away what has been done. I was amazing and I was also amazed at how much movement I had in my legs too. The following morning Nurses and Physio had me up out of the bed, and whilst I had 3 drains in 2 days after the operation I was able to walk well shuffle to and from the bathroom unaided. Whilst I definitely had good days and not so good days I was allowed to leave hospital 5 days after my operation. Since returning home I have had 2 follow up appointments at the Dressings department and a brief catch up with Miss Sassoon and Ruth Harcourt, as all is healing and progressing well my next appointment is not until mid-May to discuss the reduction and options for getting a nipple! The recovery has been one of the hardest aspects of my treatment.

Nearly 2 years since my mastectomy and approximately a year since I first met Miss Sassoon I have the starting’s of a new cleavage, it is amazing! I hope by the end of 2016 the operations will all be over with. But what I do know is that whilst it has not been a quick or easy process it has been worth it.

Throughout the reconstruction process I have attended the Keeping Abreast local Support group, as well as the Norwich support groups with guest speakers, I have made friends and gained valuable support from the ladies both those volunteering with Keeping Abreast and those attending the groups.