Our Breast Cancer Stories - 1

Ann's ~ Maria's ~ Elizabeth's ~ Heather's ~ Pat's ~ Valda's ~ Bernice’s ~ Pam's Also see Roy Collins' story on our Men with Breast Cancer page and 'What the group means to me'

MARIA'S STORY

I had a routine mammogram in October 2011, and was only mildly disconcerted to be called to Brighton for further assessment. The leaflet  that arrived with the letter indicated that this was commonplace, and that subsequently nine out of ten women  needed no further treatment. I felt no anxiety and confident that all would be well. I had an ultra sound scan, and core biopsy. The doctor was only able to take one of the three samples, and indicated that the lump appeared cystic, and most likely benign. I was asked to return a week later. I was told then, that I had a non-invasive encysted carcinoma. I worked in the NHS for 35 years, and felt well versed with tricky situations. However, I felt as if someone had just hit me hard on the head. I was given an appointment to see a surgeon the next week. I used the internet to obtain more information about this type of lump. I saw the surgeon and breast care nurse who confirmed information about the histology. However, when I was being prepared for surgery, the operation was cancelled as I was very anaemic, and concerns were greater about the cause of this. I was investigated, and the breast op rescheduled. Post operatively, I was given an appointment in outpatients but this was brought forward by a week. I knew as soon as I walked in for the consultation, that there was a problem, and was informed that the biopsy indicated an aggressive invasive breast cancer. I felt as if someone had hit me even harder. My mother died within 2 years of diagnosis of an aggressive breast tumour. I knew that I had a significant chance of developing breast cancer, but given my healthy lifestyle, I felt it was a few years further down the line.  I was keen to get further treatment under way. I had breast lymph node biopsies, and then chemotherapy and radiotherapy. I felt positive about chemotherapy and radiotherapy, and have not found the treatment difficult. I just wanted to get on with it. The nursing and medical staff have been excellent. I have really valued their kindness. One friend had far more to deal with at the same time as treatment of breast cancer. She was very positive and unfazed by her treatment experiences. This was a great help to me, and also a relative of another friend had recently received treatment. The support of care staff, friends and family has been immeasurable, but it’s odd being a recipient rather than a deliverer of care! I continue to feel vulnerable rather than in control. I debated whether to attend a support group. I felt that I did not want to be defined by this disease. However, I found the group warm and welcoming, and continue to attend.  We all share a common and challenging experience. The care and treatment of breast cancer has changed immeasurably for the better since the early 1980’s. I am grateful for all the many that have invested in it over the years, and look forward to many years ahead.

ELIZABETH'S STORY

I was diagnosed with extensive multi- focal breast cancer in November 2009 aged 41 and single mum to a little girl of 7 years. I had six rounds of chemotherapy, MRIs, CT scans, x-rays, bone scans, countless ultrasounds and a mastectomy. Then four weeks of radiotherapy at Maidstone. I had a feeling. I’d been told I had breast cysts years before. I’d been back to double check. I’d had an ultrasound and a mammogram and was told it was ok and to go away and stop worrying about it. So I felt silly going back again. But my breast was hurting, and actually the cysts felt slightly different. 23rd November – The registrar feels the lump. It’s nodular, he says, but doesn’t feel ominous. We should get it checked by radiology just in case. The mammogram takes a long time. The consultant radiologist welcomes me by name. We have a history. All smiles. We look at the screen together. She’s quiet. She says “I think they’ll want to do a biopsy on this”. When I go back upstairs to the breast clinic, four people come into the room. I am introduced to the Breast Care Nurse. Does this mean I have cancer? Probably yes. Bewildered, I go back downstairs to the radiologist for the biopsy. My friend Rachel holds my hand. I have to wait a week for the results. 1 December – Miss Shah is running late and time is running out on the car parking. This is the first time I’ve met her. She starts talking about whether I can or can’t have an MRI because of the metal in my leg. But what about the biopsy results? It’s Grade II cancer and there is probably lymph node involvement as they are enlarged. I look down at my lap. I feel dead inside. All I can think about is my precious daughter. Rachel has tears in her eyes. I’m handed a box of tissues, but I cannot cry. Lymph nodes. That’s bad right? Neo-adjuvent chemotherapy is planned to shrink the tumour before surgery. Probably a mastectomy. The word is ringing in my ears. Letter after letter, appointment after appointment. Codes - cT3 N2 Mx. What does that mean? I set about finding out. T3 means the tumour size – mine is the biggest. N stands for node involvement. M stands for Metastasis. Mx means metastasis unknown. The fear was unfathomable. The breast care nurse referred me to a wonderful clinical health psychologist and I was also put in touch with lovely Gloria who gave me some advice on wigs and scarves and introduced me to the 1066 Pink Ladies. By September 2010 I’d finished chemo, I’d had a mastectomy and four weeks of high-dose radiotherapy at Maidstone resulting in some burns (very unusual). There was over 8cm of cancer – a mixture of invasive and DCIS. Ten lymph nodes were removed, but nothing found in any – so perhaps it was there and the chemo did its stuff! I was put on Tamoxifen and Zoladex injections to stop my periods as the cancer was oestrogen-receptor positive. In 2012 I was hit by a curveball. Following a specialist biopsy at Maidstone (and some persistent nagging on my part), I had a second mastectomy in May. High grade DCIS was found but nothing invasive, so no further treatment was needed. Fast forward 8 years, it’s now January 2017. I have a thick head of hair, lots of energy (most of the time) and I’ve been back at work for four years. My daughter turns 15 next week and is working towards her GCSEs. Last June I ran (ok I walked, skipped and hobbled) 10k at the Hastings Race for Life. We’ve had lots of adventures. We went to Bali in 2011 (still sitting on my credit card). My brother paid for us to visit him in Sydney for Christmas 2012 and we’ve been to Italy, France and Holland. We’ve done ‘Go Ape’ at Bedgebury and we’ve been camping in Dorset. My daughter says she remembers very little about when I had cancer. I’m incredibly grateful for the expert treatment I’ve had through the NHS. I had the opportunity to be treated at the Marsden instead but I’ve no regrets. Miss Shah’s handiwork is second to none. I’m still on Zoladex and moved to Letrozole from Tamoxifen two years ago. I’m considering reconstruction, but not sure that I can be bothered. In the years I’ve been procrastinating, the options available have moved on, so for once, my procrastination has paid off. If I were asked to give some advice I’d say… Get in touch with the Pink Ladies – they are incredibly supportive and although I’ve not been to a meeting for years, I know they are still there if I need them and am constantly in contact with members through their Facebook page. Keep a diary or a blog – you don’t realise how far you’ve come until you read back. If you need radiotherapy at Maidstone – see if you can set up a rota for friends to drive you. The radiotherapy is a breeze compared to chemo and it only lasts a few minutes, but you do get quite tired. And last but perhaps most important – get out in the fresh air and exercise. 30 minutes gentle exercise a day is recommended.  You may have days when you can only get out for ten minutes and manage a few steps – but it’s so important. Now my New Year’s Resolution is to take my own advice.

ANN'S STORY

In the early summer of 1987, I discovered a raised area in my breast. I was living and working in London with my husband and two children. On that morning’s school run I mentioned it to a neighbour who said in very fierce tones ‘go to the doctors and check it out!’ My GP was on holiday, so I saw a young locum, who examined the lump. Without any to do, she wrote a letter and instructed me to take it in person to Guy’s Hospital; I did not really comprehend at the time that this was most unusual. I arrived at Guy’s, which was still in the old buildings at this time and managed to work out where the Breast Unit was. Arriving at reception I handed my letter in to the receptionist, who, on reading it, made me an immediate appointment with a consultant. Within the week I was seeing Ian Fentiman MD and within days I was admitted to The Hedley Atkins Breast Unit, which was then in New Cross Hospital, London. My initial operation was a lumpectomy, which confirmed cancer. I then had a further operation which is called an axillary node clearance, taking out some of the glands in my armpit. At the same time I had metal rods inserted through my breast to prepare me for an Iridium -192 Implant. This is a treatment which no longer exists but at the time it was at the forefront of treatment for breast cancer if you were a suitable candidate. For this treatment I was put in isolation for I think, two days, during this time no one except my husband could visit me and the nurses only came in to bring me food and check on me. My husband was allowed brief visits but only to the end of the bed. I had to wave to my young son and daughter from the window of my room. I had radioactive rods inserted into the metal tubes, then screwed onto place. These were removed at the end of the treatment. On discharge from the hospital I had six weeks radio therapy and then went onto a year of chemotherapy. Early after my discharge, we moved to Hebden Bridge in Yorkshire but I continued to go to Guys for my chemotherapy. On looking back I’m not sure how I managed to do this but I did. I caught the train from Leeds, went straight to Guy’s hospital had my treatment then caught the next train back, the effects of the chemo hit me on the train. At Leeds, my waiting husband took me home for me to recover until the next time. And recover I did! Three years later we moved back south to Hastings. There was a brief scare in 1991, when on a check-up at Guy’s, it was thought I might have another tumour. I was admitted back to Guy’s in the new Hedley Atkins Ward at London Bridge for surgery but happily this turned out to be a false alarm and all was well. My breast had become quite deformed by the surgery and treatment, it also shrank in size. So much so, that in 2003, I had a breast reduction in the healthy breast to even me up. This was done by Mr Pickford at the Queen Elizabeth Hospital, East Grinstead. In 2011, I developed what I initially thought was an infected spot on the breast that had had the tumour. It didn’t clear up and my doctor referred me to Miss Shah, breast consultant at the Conquest Hospital in Hastings. After many courses of antibiotics and many trips to the Conquest it was decided that I had radionecrosis, a condition bought on by the iridium treatment that I had in 1987. Being such a rare case, I found myself being examined by students and having my photograph taken and agreeing that Miss Shah could refer to my case in her teachings. The radionecrosis spread and the infected areas became very unpleasant, requiring dressings and the inflammation grew steadily worst. Eventually Miss Shah felt that a mastectomy was the only way forward and in January 2012, I had a mastectomy. I am now waiting for a reconstruction which will be done by Mr Pickford. This is on hold until I can get down to a required weight need for the safety of the operation. Though the radionecrosis was an unpleasant side effect of the treatment I had in 1987. I like to think that the treatment I had back then probably saved my life. I know now that I had a pretty massive tumour, so I consider myself lucky that I was able to see my children grow up, that I reached my 70th birthday in good health and my husband and I celebrated forty years of marriage in November 2013; I have a lot to be thankful for.

HEATHER: MY BREAST CANCER EXPERIENCE.

I was called for my routine mammogram in 12 December 2007 for my 5 yearly check-up. We went away for a long Christmas Holiday and upon returning home on the 2 January there were two letters waiting for me saying there had been a problem with my mammogram and they wanted me to make an urgent appointment at Brighton Hospital as they needed to do some further checks. I’d had this before so I wasn’t too worried. I was seen by Dr Ruben on the 7 January. He said that there had been something suspicious on the mammogram and I needed further investigations. I had several biopsies taken and another mammogram and an ultrasound done and was told to come back in two weeks for the results. I went back on the 23 January 2008 it was a very long two weeks. I was told that they had discovered cancer in my left breast. I was extremely shocked as I never expected to hear that result. The Doctor said as I lived in Battle he would refer me to the Conquest Hospital under the care of Miss Shah. The appointment came through for the 28 January 2008. Miss Shah filled me with confidence. She said that the mass was about 31mm and we agreed a total left mastectomy and node clearance as the safest procedure. The well organised machine leapt into action and I was booked in for my op on the 15 February. I must admit to feeling scared but I was soon put at ease by Miss Shah’s hunky Registrar Matt. It’s amazing what a beneficial effect a young man has! I was in a 6 bedded bay and there was a good mix of patients who helped pass the time. The surgery wasn’t as bad as I expected, in fact almost pain free just the drain causing bother. I was soon up and running around, Matt used to come and visit us at night and our bay was full of twittering females! I was delighted to hear that he was the last person to hold my boob, we all chuckled. Miss Shah said that as they had found my cancer quickly and it hadn’t reached my lymph nodes (although they did a total lymph clearance) I would not need radiotherapy or chemotherapy. I felt so fortunate others weren’t so lucky. I had to go back to the ward frequently as I had a build-up of post-surgery seroma that was regularly drained by Matt still it was nice to see him! I had lost my elder sister to breast cancer in 2000 so I must admit I was rather scared that I would not survive it. My husband was so supportive. Selfishly I didn’t give a thought how he was coping I was just thinking of me and how I was affected. With hindsight he needed much more support than I did, it was so hard for him to keep positive for me as he didn’t have anyone to share his fears with. We cried many a night together it was a scary time. I joined the 1066 Pink Ladies and immediately felt part of the group. I was so heartened to hear other ladies case histories and I enjoyed the meetings. I could never get on with the ugly great prosthesis provided by the hospital although they told me that was what I looked like. To me it was huge ugly and plastic. I bought a "been a boob" from Nicola Jane much lighter and more comfortable and suitable for me. I was always self-conscious of my loss and always worried it was obvious to everyone, I discussed this with Miss Shah. She said I was an ideal candidate for reconstruction as I had not had to have any other therapy. She put me in touch with the breast care nurses and then with Mr Pickford who was the plastic surgeon from The Queen Victoria Hospital in East Grinstead who did breast reconstructions. Mr Pickford said that my good breast was too big and droopy (I said natural fall) he said he couldn’t rebuild me one like that (phew!) so he suggested he did a reduction on that side then follow it by a Diep Flap reconstruction (which incorporates a tummy tuck as the new breast is built from surplus tummy fat) this seemed the perfect choice for me as I had a load of surplus tummy fat hanging around doing nothing and I did want to be reconstructed using my own natural skin and fat if possible. I had the "good" breast reduced in January 2010 I was in hospital just two nights. I was really delighted with the result, it was perfect! Neat and pert I couldn’t have designed it better myself. I just need another one like that. With great excitement I was booked in for my reconstruction on the 14 March 2010. Whilst I was under the anaesthetic Mr Pickford made the incision and discovered that my tummy did not have an adequate supply of blood vessels to the flap due to a previous hysterectomy where the surgeon had cut them all. He had to quickly revise the operation using the one decent vessel he found. Mr P decided to do a pedicle flap op, he later said he hadn’t done this operation for ten years as it was an out of date procedure. This meant tunnelling the flap under my skin and into position without cutting the only available blood vessel. Under normal circumstances he would have disconnected the blood supply lifted the flap and using micro surgery "replumbed" it into position but he did not want to disturb my one usable vessel more than he had too. Coming around in recovery he was there, so concerned, he told me that he did not think the operation was a great success but the next 48 hours would tell. They put me under a "bear hugger" to keep warm as the flap needed help Later I was taken from recovery to the "Step Down Unit" this is a unit of 4 beds where there is constant monitoring. I was introduced to the Staff Nurse who would look after me. I’d landed on my feet, Jason was a young blonde blue eyed lad in his twenties. He kept me company each night. He was a fantastic nurse and was so caring. During this time I needed a transfusion of two units of blood and then fluids to help me. I have naturally low blood pressure and pulse this worried them. During the day another team rolled into action. It was wonderful care. After 4 days in the step down unit I was transferred into the next bay of 4 beds as I didn’t need quite so much observation. When Mr Pickford later came to look at the flap he said that sadly it looked as if half of it hadn’t survived as it had turned black, he asked if I would consider leech therapy. I agreed as I felt it could only be beneficial so I had a week of leeches sucking out the bad black blood trying to get a good flow of nice red stuff, quite interesting if you are not too squeamish as some times after they had fed their fill they dropped off and wriggled down into the bed, one did a runner across the floor, the trainee nurses didn’t like that! I named the leeches after politicians. Tony Blair was a particularly good feeder but Gordon Brown wasn’t interested. Mr P said that they were making a case study of me due to the failure and arranged for photos every step of the way, they had a plastic team case conference to see if things could have been handled better and if any lessons could be learnt from my experience. After a week of the leeches Mr P decided to do what he called "a tidy up operation" which cleared away all the dead black skin and stretched the good skin over to form another good breast. I did not think there was sufficient material there. What a magic man, so very clever, there when I came round was a good new boob swollen and tender but a recognisable small breast at last! I might need another op later to get symmetry but I’m not in the least worried. Mr P decided as I had been so patient for 14 days I’d had long enough being hospitalised and said I would do better at home. The tummy tuck had gone well. He had taken off all my surplus belly and midriff fat and given me a wonderful flat profile. (I’ve been told since by Graham his Registrar that as Mr Pickford felt I had a bad experience with the breast surgery he gave me the best tummy tuck ever, the type he reserved for his private patients). The whole experience gave me total confidence with The Queen Vic at East Grinstead from the cleaners up to the top. The anaesthetic, surgical and nursing teams were wonderful and made the whole experience totally trauma free even for a wimp like me. I’m now slowly healing and my body does more each day. I’ve learnt not to push myself too far. I don’t regret the procedure for a moment and highly recommend the operation and I am delighted to be in proportion at last. On my latest appointment with Mr Pickford it was agreed that I would have an expander inserted (a sort of balloon) and a regular inflation to get my new breast to the correct size. This was done in February 2011 quite a straightforward procedure if a little "uncomfortable" when it’s blown up to oversize to allow for the "natural fall" (Mr P likes this phrase – as droop isn’t what I admit too) It’s wonderful to be able to fill a bra with ME rather than that uncomfortable prosthetic one. The pretty underwear will come out this summer – I even tried on a bikini and you can’t see the join! Later on the expander will be removed and a smaller silicon implant will be inserted – stitch me up yet again and later Mr P will do a small op to make a nipple just a little cross made and stitched up to make a nobbly bit. When that settles down it can then be tattooed to make an areola, the cherry on the cake! - Watch this space!