Words that speak of courage, words that speak of hope, words that speak of determination, words that speak of despair, words that sing, words that cry. Words that heal us, words that empower us.
I am not in you area but still have a story to tell. Mine is not the usual one, full of sweetness and hope, but true nevertheless. At 16, in 1973, had very aggressive treatment for sarcoma which left me with many problems both physical and emotional. Without going into all the gory detail, I was left with constant pain for 20yrs or so, about which nothing could be done, lost the sight of one eye and radiation caused the eye and surrounding bone/soft tissues to shrink leaving deformity. Eventually, 8 yrs ago got a prosthesis which stopped the pain and helped a bit with appearance. I was told that the aggressive chemo would probably cause infertility and a much greater risk of cancer in future. There was no form of support available at all in 1973 and I just about coped alone - my parents were too inadequate to assist. There was one foiled suicide attempt. I did get myself together and got a degree, got married and, against the odds, had a son with no problem at all. Great, except that coping with the eye, pain and appearance, has been very difficult much of the time. Deformity like this causes a huge loss of self esteem and one is always aware of being the ugliest person at almost any social gathering. Success in work and relationships was good but does not compensate for deformity and pain.
When I discovered the breast lump about a year ago, it was reasonable to assume it was breast cancer and, with my husband, I had to decide my best course of action. Having lived with the eye problem for so long, I knew that I could not cope with any more mutilation. The chemo I had in 1973 caused extreme nausea resulting in anorexia, temporary but traumatic baldness, and septacaemia, amongst other things - so I was very reluctant to do this again. I read everything, including medical textbooks borrowed from the hospital library, and realised that, at my age (44) it is very unlikely I have any chance of long term remission whatever the treatment regime. I decided to ignore the lump for a few months, go on holiday, enjoy life as much as possible, and only go to the hospital in time to stop the tumour breaking out.
At first, I was told that the only treatment was radical mastectomy and aggressive chemo. The surgeon was of the old school, just like the 1973 version, with no regard for the emotional/psychological impact of such treatment. My refusal of this treatment caused him some amusement and assurances that I would change my mind in a week or two. I didn't. Instead, I wrote to the head of the oncolgy team, and was seen by him the next week. This Professor was a little less rigid and showed at least a little concern for the quality of life post treatment. I requested all the available tests before making any decisions and the bone scan showed metastases - though these are small and unsymtomatic. Of course, there is no cure and any treatment palliative only. It was what I expected, and, afterall, even if I'd seen a medic earlier this would probably have happened at a later date.
I refused surgery again and expressed extreme reluctance to chemo. Only then was I offered radiation to control the breast tumour combined with hormone therapy for the longer term. ( I am oestrogen positive) Radiation - 30 sessions has been very successful in reducing the lump and I had few side effects, tiredness being the main problem. The breast looks normal, virtually the same as before the lump, depite being "peau de orange" at the start of treatment. I'm told the tumour could regrow but this is true even after surgery. The hormone treatment has been more problematic. Zoladex, to effectively close down ovarian oestrogen production was given with Arimidex to work on adrenal production. The scan had shown up an ovarian cyst but I was told that the hormone therapy would probably shrink this so no urgent need to remove it. Unfortunately, with 5 more zaps of radiation to go, I was rushed into hospital in extreme pain. The cyst had twisted neccessitating an emergency hysterectomy. Not good but I got over it and, of course this was quite positive in relation to the cancer treatment. I now take Arimidex only and feel very well aside from menopausal symptoms.
The point I'd like to make is that there are, in fact, methods of treating breast cancer, which do not mutilate and deform but it is unlikely that women will ever be told about them unless they adamantly refuse surgery. I am the only woman to refuse surgery in 10yrs at my hospital and the medics do not know what the outcome will be - so I am not advising anyone else to do this. But be aware that if you really cannot cope with losing a breast, there is another way - though untested. As a result of this alternative treatment regime, my life is going on without the side effects of chemo and without the distress of mutilation. My long term prognosis is not good but at least I am able to enjoy a full life for as long as possible this way and, if I change my mind in future, chemo is still possible then. I believe that every woman has the right to make an informed choice about treatment - and that means being made aware of ALL the options, with their benefits and deficits, before making any decisions.
I am appalled that women, in their thousands, are routinely subjected to gross mutilation as treatment for something as common as breast cancer. I am equally certain that, if it were so many children (heaven forbid) or men who suffered this kind of degradation, there would have been enormous social pressure to find an alternative means control, if not cure. Not so for women. Perhaps the bravery and stoicism of women, and social mores that do not allow any expression of negativity in relation to breast cancer treatment, have led to acceptance of a practice that owes more to the medieval battlefield than modern medicine. Perhaps women would get a better deal if they were more prepared to stand up and say just how emotionally devastating the present standard treatment is - not easy to change attitudes though.
I do not really expect that you will add my story or comment to your website as it challenges conventional treatment and the socially acceptable idea that one must always fight, at any cost, and be strong enough to cope with every possible pain and indignity. My best wishes to all those touched by this dreadful disease.
This story is from the July/August 1999 issue of Mamm Magazine, and the author is Susan Rust. This is her story, in her own words.
Two days after my lymph node incision and first mastectomy, I decided to go for a bike ride. I didn't tell my parents, who would have said I'd lost my mind, it was too dangerous, or just plain stupid so soon after surgery. I told my kids, though. They already knew I'd lost my mind some time ago. I bike because I have to escape my house - get outside, feel the air, see the sun, and be by myself. (I run for the same reason.) My house is where I have cancer. When I go for a ride or a run, I almost feel I can leave cancer behind. Walks are no good, because you can't walk away from cancer, but you can ride away from it, and you can run. The faster I pedal, the farther back it is. I got out my bike shorts, a T-shirt, my helmet. I put on what I call my "training bra"; a new little cotton job that has a fake boob tucked into a pocket, on the side of my choice. I carefully pulled the bra/tee over my head, a mistake that sent a hot, searing pain through my chest. After an excruciating moment, the pain slowly ebbed and flattened out like a wave that crested. I arranged the lymph fluid drain tube with surgical tape - I felt like I'd duct-taped somebody's plumbing (my own) and tucked the tube into my bike shorts.
It was a clear, hot blue-sky summer day in August. Once on the road, I felt the freedom I always feel when I ride. But this ride was more important than usual because for the first time in a long time I was doing something normal again. I was outside in the sunshine on a beautiful summer day. I was alive! I kept pedaling - couldn't stop, couldn't turn around; I just pedaled. Funny how everything looked the same, even though I had cancer. The trees hadn't changed a bit, nor had the waving wheat fields, the contented cows. Two miles, four miles, seven miles felt so good. Finally a little sanity leaked in at eleven miles and told me to turn back. Six miles from home, I started to fade. Maybe it was leftover anesthetic, or the release of tension. Maybe it was the aftershock of surgery. I felt a little light-headed and told myself to shake it off and keep going. With only three more miles to go, I felt better. I can make it! It was a personal challenge.
At home, Lindsay had been getting worried. Mom had been gone for a long time. She always says she'll just go for a short ride, and it's never short, but she has just had surgery. Maybe something happened; maybe she is waiting on the side of the road for me to help. I won't call Grandma and Grandpa, because they'd say she was crazy to think she could ride so soon after getting out of the hospital. Lindsay called my friend, Sharon, who offered to drive out and look for me. They found me about two and a half miles out, and when I stopped to talk to them, dizziness washed over me like a fast-moving shadow. I pretended I needed to check my shoe, so I could bend over and get some blood to my brain. It worked. "I'm doing great," I insisted, looking green. "Never felt better." OK, that was a lie. I had felt better, but I could definitely make it. No, I didn't need a ride. Thanks for coming, though. (I couldn't quit then, because if I didn't have the inner strength to ride a bike feeling light-headed, how was I going to have the strength to fight cancer?) I made it home, exhausted, but victorious. See, I said to myself, I can still be normal. Part of me is still normal. Then I walked into the bathroom, closed and locked the door, took off my bra, popped out the boob, untaped the drain, suctioned out the bloody fluid and tried not to stare at the long curved scar smiling back at me in the mirror. Tomorrow, I thought, I'll try running.