Delayed Reconstruction.
Carol H's Story - Delayed Diep.
When I had my mastectomy in March 2005, I wasn't offered immediate reconstruction, and as the skin on my breast was badly bruised as the result of three biopsies to confirm the breast cancer, I doubt very much whether I would have had such a good a result as I have now.
A DIEP flap was recommended, which was good for me, as I received a tummy tuck as an added bonus! The operation took 3½ hours, and I felt fine afterwards; no real pain, only an uncomfortable feeling in my tummy where it had been tightened, but that was a good feeling! I was quite surprised at the number of tubes I had; two drainage tubes in my tummy, (one at each end of the cut), one in my breast, a catheter, a cannula in the back of my hand, and oxygen - not a full mask, but a small plastic tube with two outlets for your nostrils. I was quite surprised that I had no dressings on the wounds, but obviously all the stitches were internal. I can't say I ever felt any pain; in fact, the worst thing was the Heparin injection I had to have daily - each day it was more painful. The breast was checked with a Doppler every 15 minutes for the first 48 hours ( to make sure the transplanted blood vessel was still beating), but the time between the checks soon became less frequent. During my stay in hospital (6 days), not once did I have a good night's sleep; in fact the day I went home I felt very weepy and emotional. Whether that was the after effects of the operation, the lack of sleep, or relief that everything had gone so well even now I cannot tell.
Now, nearly 16 months later, I have had two further minor operations. The nipple was from nipple-sharing and some lipofilling (from my inner thighs) for the top of my reconstructed breast where there was a slight dip. I also have had a tattoo for the areola which now has faded slightly, and I hope to have that redone before Christmas.
I am truly appreciative of the skill and expertise of my two plastic surgeons (Elaine Sassoon and Richard Haywood) who collaborated on my reconstruction, and the marvellous care I received from the whole nursing team at the Norfolk & Norwich University Hospital, and have nothing but praise for their dedication and cannot thank them enough I can now wear any type of pretty bra, and do not have to hunt around for high-necked tops - in fact I feel just as good as I did before the mastectomy. The majority of men, and women who have not been through a mastectomy, cannot imagine how unfeminine and unwomanly a mastectomy makes you feel.
I can sincerely say to the whole team but especially to Elaine & Richard "Thank you for making me feel a complete woman again".
Carol W's Story - Delayed Diep (Aged 63)
Two months after welcoming in the new millennium I was diagnosed with breast cancer and had a mastectomy. At fifty five years old I accepted my mutilated female form (for that was what it was). I was just thankful the cancer had not spread elsewhere and my prognosis was good.
Fours years later it was suggested by my breast care nurse to consider a reconstruction. By now I'd come to terms with my situation. I was retired and had some ‘me' time. Despite being warned it was a major operation I decided I would go for it. The mastectomy was quite straight forward and I thought this would be the same.
The night before the op I was marked up in readiness-all seemed ok. The op was expected to take about seven hours. I went down to theatre at about ten in the morning, looking forward to having a flat tummy and a new boob.
On coming out of the anaesthetic I was aware of raised voices- I could vaguely see it was about twelve o clock. Had I had the op already? Over so soon! No this was twelve midnight.
There were obviously differing opinions as to where I should be taken-high dependency as planned or ICU. I ended up in ICU having lost several pints of blood the op was more complicated than envisaged. The blood vessels to be used from my dieppe flap had been damaged due to a hysterectomy several years before.
After twelve hours in ICU I was transferred back to HD on Coltishall Ward into the care of the most devoted, caring nurses. Every ten minutes my new boob was monitored with a dopla to check the blood supply was still flowing. I was kept very warm and my body was swaddled in masses of padding. I was uncomfortable but the sleep deprivation is what I remember most of all. It was as though my body was afraid to let me fall asleep.
The nights seemed endless dopla readings were not strong. Thirty six hours after the op my new boob turned bluish- Elaine was very concerned and action had to be taken or I'd lose it.
A team of consultants came in late at night and I was back in theatre for another op- other blood vessels had to be found if my boob was to be saved.
Five hours later I was back on the ward feeling as though I'd been ht by a bus. My boob was to be left untouched for forty eight hours-to survive or fail-no dopla checks- it was up to my body not to let me down. Two days later my boob was unveiled. The consultant reached for his camera, I took a photo and excitedly exclaimed "We did it!"
I will always be grateful for the care, time and expertise spent on me. I was made to feel so special and had been given back my femininity.
Four years later I'm enjoying helping other women make an informed decision about their reconstruction. Procedures have moved on and I understand that the experience gained from my op has now put into place scans prior to the to operation so any problems are realised prior to the op. I can only apologise to Elaine for giving her nightmares at the time and taking her away from her cat!
Alison's Story (Part One) - Tissue Expanders
I was diagnosed with invasive triple negative breast cancer in June 2007. At that time I knew absolutely nothing about breast cancer or reconstructive surgery. I clearly remember my shock and confusion as my Breast Surgeon told me a Mastectomy was very likely and also that I needed chemotherapy first to reduce the size of the tumour before surgery. I also required Radiotherapy after surgery and therefore this meant my reconstruction options were limited. Immediate reconstruction using fat/tissue/muscle from another donor site on your body is not practical as the Radiotherapy damages the reconstructed breast.
There was a moment, during my chemotherapy, when I realised I never wanted to go through any more of this treatment. That was the moment I decided to have bi-lateral mastectomies. Firstly to reduce the risk of a recurrence and secondly to achieve a more symmetrical result.
Both my Breast Surgeon and Oncologist were extremely supportive of this decision, and thankfully when I had my consultation with Miss Sassoon she agreed to give me a temporary solution using tissue expanders. The plan was they would be replaced 12 months later by a DIEP reconstruction - using the skin and fat from my abdomen.
I was told the initial surgery would take 4-5 hours. I was under anaesthetic for 6 hours and in Recovery for 2 hours. When I woke up following my surgery, I felt as though I was unable to take a deep breath. My chest was incredibly tight because the expanders are placed behind your chest muscle and are therefore stretching that muscle. I can only describe as having a belt pulled tightly around your chest, or wearing a corset! I had 2 drains in each side, from my armpit (where they removed my lymph nodes) and my breast. I was out of the bed the next morning, slowly, but it was very uncomfortable to move or bend over for about 10 days. After 2 weeks it had gradually become easier.
During the surgery, the expanders had been filled with approximately 100ml of saline on each side. About 3 weeks after my surgery, I was back in Plastic Surgery Outpatients for the first of my weekly saline ‘inflations'. I was given a magnet and a marker pen whilst I was on the ward - the magnet was used to find the ‘port' within the expander to enable a syringe of saline to be injected into each expander. Once the correct spot was found using the magnet, I was marked with the pen. Then approximately 100ml of saline was injected into each ‘breast'. This continued over a course of 4-5 weeks. The inflations themselves felt weird rather than painful - a little uncomfortable, but taking 2 paracetamol before the appointment did the trick.
I am so very grateful that all my Consultants agreed to this plan, I always felt I needed ‘something' there whilst I waited for my definitive reconstruction. Unfortunately one of the expanders has deflated now - but I am booked in for my DIEP in January 2009....and from there we will move to Part Two of my reconstruction story!!!
Susan's Story: Delayed Lattisimus Dorsi (Aged 59)
After the promise of reconstruction I researched every option available. Unfortunately a tummy tuck was out and bottom tuck didn't appeal so a delayed Lattisimus Dorsi flap was the most appropriate choice.
Being a busty lady I asked for a reduction on the unaffected side so I didn't have to have so much muscle removed from my back. With an expansion pocket to start with and then the final reconstruction, followed by a nipple and tattoo of my areola, I am now the proud owner of a matching pair of boobs!!
Leading up to the reconstruction all my family and friends tried to convince me I didn't need to have the op, but with all good intentions they didn't see what I saw in the mirror and didn't have to cope with a large prosthesis, which had a will of its own.
The day arrived and the op was over and I came round to an immense amount of discomfort, then after peeping under the sheets a greater amount of relief. It was over and yes there were two boobs and a lot of steri strips but they were all mine.
I know it was the right decision and I lead a busy normal life with no physical hang ups and a much healthier outlook on life. If there are any valuable bits of information to pass on they are:
- Ask as many questions as possible.
- If you are not satisfied with the answers you are given ask again.
- Do as you are told.
The nursing staff and surgeons do know what they are doing and I have two boobs to prove it.
Jackies Story: Becker Implants with possible IGAP reconstruction.
I have lived with Breast Cancer all my life...not as a patient but as part of a family where people develop and do not survive the disease. I have always considered myself as with the disease but in an inactive form or just not yet. This family history has deprived me of at least 3 generations of close family, a grandmother and a mother, cousins and even my godfather. So awareness and fear of the disease have always been there and I have tried to ensure that I have done everything possible to avoid the disease myself first through family History screening clinics with regular mammograms as I got older.
Recent medical advances particularly in the field of genetics allowed me to then opt for risk-reducing surgery which has meant bi-lateral mastectomies, removal of as much breast tissue as possible together with the nipple/areolar area as this was where my mother and godfather first had disease. I felt strongly that I would want immediate reconstruction and although my options were limited, being small and thin, I accepted initially Becker expander implants as a temporary measure due to the urgency of the operation, my breasts were showing signs of possible disease.
When I was first offered an opportunity to discuss my family history with a Geneticist, it became quickly clear that with no survivors, testing for a possible gene mutation would be impossible. We obtained all the necessary documentary evidence to put together a family tree based on breast cancer and I was classified as High-risk with no known gene involvement. I was offered risk-reducing surgery, the start of a long process designed to ensure that patient expectation in terms of outcome is not unrealistic.
First the actual mastectomy is straightforward but it is impossible to remove all the breast tissue, 90 - 95% is the norm. Also reconstruction is just that, whatever option is suitable it does not restore your own breasts but it can provide an acceptable replacement so that it is possible to move on with life with not too much of a physical difference. There can be complications but the protocols to be gone through before surgery ensure that women should be well-prepared. These include sessions with a multi-disciplinary team which in my case included a breast oncologist who performed my surgery, breast care nurses, a plastic surgeon and a psycho-oncology nurse who discussed with me my feelings around cancer. I was surprised at the time that we did not talk about the loss of breasts but as time went on, I realised that I had been far more afraid of cancer than the mastectomies but I certainly expected the reconstruction to help my adjustment...waking up flat-chested was not something I relished as I had uncomfortable memories of my mother's experience.
This process takes some months at least because the decision-making is so individual, in my case it was about 2 years from Genetics clinic to surgery...and even so in the end we had to rush because my breasts had developed worrying symptoms.
Prior to this I had been taking my time discussing the reconstruction with my surgeon who considered my ptotic (droopy) breasts and thin skin difficult and he sent me to see a colleague plastic surgeon who offered me an LD flap, using the large back muscle tunnelled under the arm to form a breast. I declined this as the procedure's complications include possible nerve pain and I already had shoulder problems. I felt I wanted implants but due to the surgeon's reservations, I decided to seek a second opinion from another plastic surgeon who specialised in autologous flaps, that is using the patient's own body fat and/or muscle.
The opinion I received was the one we chose as we were in a hurry: semi-skin-sparing mastectomy with nipple removal using a transverse central incision which allows good blood flow to the wound with Becker expanders. In the end this was achieved successfully and with no immediate complications. Implant reconstruction can have very good results and is certainly a fairly simple procedure but it has its own limitations: the implants have a lifespan of 10 -15 years and a percentage of women do have contracture where the capsule of scar tissue round the implant tightens and causes pain and hardness. In both these cases, replacement will be necessary.
I am pleased with my result but am aware of these shortcomings. My surgeon and I decided that I would return to the plastic surgeon to discuss a strategy in case of implant failure: my only option could be an IGAP flap, fat taken from the lower buttock crease. Tissue flap reconstruction is considered a permanent solution with a natural result, getting away from the prosthetic nature of implants.
Currently I am waiting for an appointment to discuss IGAP and whether I go for it sooner or later. There is no doubt in my mind that a permanent reconstruction would be the ideal; although it would mean more major surgery, two operations done 3 months apart. Once the recovery is complete hopefully my breast cancer story will be over for
possibly the rest of my life. It turned out that the symptoms which brought my operations forward were not cancer but extensive atypical lobular hyperplasia, a marker for bi-lateral breast cancer longterm. This is one of those tricky conditions which does not get picked up on mammograms as the changes are contained within the cells; it is usually only found when invasive.
I feel that everything I have done has been justified by this discovery and I feel very fortunate. The breast team who has looked after me for the last few years has been supportive and pro-active in guiding me through the process and I can only praise their professionalism. Things have moved on considerably on the Genetics side since I first saw them 8 years ago so I am talking to them again about possible testing for the BRCA gene; although I have 2 sons there is still a risk for them especially as there is already a history of male breast cancer. If we did test positive this raises questions about other cancers such as ovarian so I am glad of the team's continued support.
Risk-reducing surgery may seem a big step to take but I am as convinced as ever that it has been the right one for me. My close family has been very supportive and we are all happy and very relieved that it is done.