Breast cancer was the last thing on my mind. I was only 31, and my life was just coming together. I'd met a wonderful man and moved to live with him in the UK, my graduate thesis was finally done, and one of the top art restorers in London had hired me and was training me in the restoration of priceless antiquities. Then I found a lump in my breast while lying in bed one morning in March of 1996. It was big , probably 10cm long and at least half as wide. I saw a doctor quickly, and was told it was almost certainly a cyst, given the size and my age. No-one was in much of a hurry to investigate further. By the time I was seen by a specialist at the local hospital a month later, the breast was swollen and red, the skin was dimpled, the nipple was flat and I had palpable nodes under the arm. I was still naively assuming it was benign, but the doctor must have known it was IBC as soon as he laid eyes on me.
After two days of agonizing, Pete and I decided that I would be better being treated in my native Canada with family and friends around. We quit our jobs, arranged travel and packed to fly back two weeks after my diagnosis. In Canada we had to arrange accommodation and I began treatment as soon as I could. Neither of us could work in the beginning, since I was in treatment and Pete had no work permit, and we were turned down for government assistance, so we had to borrow from family to get by. That period was possibly the most stressful of my life. Eventually work turned up for him, and my response to chemotherapy was good, so the cloud started to lift a little.
The chemotherapy I was given is about the strongest available in Canada at that time to IBC patients without distant metastases. Initially I had high dose CEF (cyclophosphamide, epirubicin and fluorouracil), but after the first round and a severe case of neutropenia, the F drug was dropped, the others increased, and neupogen injections added to keep my white blood counts up. I was really lucky, and had little nausea, moderate fatigue and a few other manageable side effects. The loss of my hair was really hard, and at first I hid my baldness from everyone, but by the end of the six months I was going bareheaded most of the time. I didn't have to work during chemo, but I suspect I could have managed part-time.
After six months of chemotherapy, I had a modified radical mastectomy. I had always been very large-chested, and was having an elective breast reduction on the other side at the same time, so it made the whole thing a much less negative experience than it might have been. A week after my surgery, while recovering from a post-op infection in hospital, I was given my pathology report. It couldn't have been better: no residual cancer, clear nodes, and no sign the cancer had ever been there. The relief was incredible, and it was like the emotional dam finally burst. For weeks I went through sorrow, anger, frustration, and all kinds of other feelings.
Radiation was made easier by the knowledge that I had beaten the odds so far, and that I had a decent chance of long-term survival. It was tiring, and irritating to have to go across town every day in the middle of winter, but I got through, and finished nine months after beginning chemotherapy. It still took a long time to recover my energy. After several months I was doing regular exercise classes and spending time upgrading my computer skills, hoping that the worst was behind me and that I'd stay disease-free.
Unfortunately cancer hit again eight months later, in the form of a brain metastasis. It was discovered by CT scan after I'd felt a bit fuzzy headed and clumsy for a few months, then had a week or two of bad dizzy spells. The timing was lousy, ten days before our October 5 wedding. I was put on high doses of Decadron, and we went ahead with both the wedding and the honeymoon in Jamaica, since it was taking time to get test results and devise a treatment plan. Nothing was said at the wedding, but all the guests had been told, and although we were under stress, we felt really supported by people. We knew that if the tumour wasn't operable, odds were I'd be dead within a year.
An MRI showed the tumour to be solitary and operable, and there was no sign of cancer elsewhere, so the neurosurgeon gave the okay for surgery. The tumour was 3.5cm, high in the left parietal lobe. The greatest risk was of damage to the function of the right arm or leg, but even that was relatively low. Given the alternative, we agreed to the surgery, which was scheduled for six days later, October 27. I had to be awake for the operation, and the hospital where I had the surgery was not well run or pleasant to be in, so the whole experience was pretty awful. I was released three days later with a full head of hair covering the incision.
The next morning I woke with a swollen leg, and a blood clot was found when I went to Emergency. After a much more pleasant four day stay at my main hospital, I was released with orders for daily injections of blood thinners for at least three months. I was now on Decadron to prevent swelling of the brain, Dilantin to prevent seizures, and Innohep to prevent a potentially lethal embolism. I had a few weeks to rest and then started whole brain radiation.
My radiation treatments were done in a week, so it was less of a hassle than the chest radiation, but the higher doses caused headaches and extreme fatigue. About two weeks later my hair fell out again, and this time I chose to wear a wig to cover the long incision and the depression left in one area. As time went on, I was able to wean off the Decadron, then the Dilantin, and finally the Innohep. From February 1998 until that September, I was well, built my strength back up, and managed to start working part-time. Despite the brain tumour, we still felt postitive.
One thing we learned through all of this was that brain mets are a bit different from other recurrences. Since the initial chemo was prevented from effectively treating the brain by a biological barrier, a recurrence there didn't mean that chemotherapy had failed. It wasn't good news, but there was still a chance that with the brain tumour under control, I wouldn't recur again. Unfortunately, the cancer came back in September 1998 in exactly the same place in the brain. The doctors weren't surprised that I'd had a recurrence but they were surprised about the location, since the treatment I'd had usually does a better job than that. The metastatic workup was still clear and there were no other spots in the brain.
The surgeon wasn't enthusiastic about what he could do for me, since I'd been left with a clumsy hand the first time, and he suggested we look elsewhere. The next obvious step was stereotactic radiosurgery, a focused radiation treatment potentially as effective as surgery. SRS was booked quickly and we were told that it generally worked for at least two years, but that long term results were not available yet. It was a one-day treatment which involved having a metal frame screwed into my head in the morning for scans, and radiation treatment with the frame late in the day after the doctors had sat in a room for several hours, planning the doses and angles needed to do maximum damage to the tumour without hurting the brain around it.
The next MRI scan looked better, but the one after that was a bit worse again. I took Thalidomide for about five months, but it seemed to have no effect on the growing mass. It could have been tumour growth or radiation damage, but either way, it meant more surgery to cut it out. In January 1999, I had a second awake craniotomy with a second, slightly more encouraging doctor. Even before the surgery I had been having increasing problems with both the right arm and leg, and I had started to have seizures every couple of weeks. We hoped the surgery would clear it up. Things did get better but not for too long, and the post-surgical MRIs started getting worse again.
W ithout enough tumour there to justify surgery, having had all the radiation I can safely have, but still feeling unable to do most of the things I want to do, we decided to look into less standard approaches. Chemo generally isn't used for brain tumours but my doctor suggested that Methotrexate in very high doses might get through the blood-brain barrier. The doses used range from 25 to 125 times the doses used in CMF. There were a bunch of extra precautions and a three to four day hospital stay each time I did it but surprisingly I had fewer side-effects than I would have had at lower doses because a second drug, Leucovorin, flushed the Methotrexate out of my system before it caused severe hair loss, low blood counts, mouth sores, etc.
In July, after four rounds, the MRI showed a larger mass, so we scrapped the Methotrexate and returned to the chemo I'd had in 1996, since it had worked so well. The September MRI still showed growth, albeit less, but I had hit the maximum lifetime dose, so we needed to change again. By this point so many things had failed that I had resigned myself to never being really well again, and probably being on chemo for however many months I survived. Surprisingly, I hadn't deteriorated much since May even with a lot of growth on the MRI, but I was emotionally and physically drained.
October 1999 I started Temodal, an experimental drug that hasn't been tested yet on breast cancer (even in the brain, it's still breast cancer). Two months later, another MRI. I was still feeling reasonably well, although incredibly tired. Comments my surgeon had made had left me with the idea that some of the mass might be dead tissue, and I asked for an experimental test that can distinguish tumour from necrosis, in the hope that things might not be as bad as they seemed. The day after the tests, I was told that the mass seemed to be smaller, which was the first good news in almost a year. Better news followed a week later, when the other test indicated that there was no living tumour detectable, that it was all necrosis. An expert in radiosurgery reviewed all of my 1999 MRIs, and said it was possibly necrosis all year, a textbook case of post-treatment damage.
It was days before Christmas and Y2K celebrations, and I had gone from believing the tumour was resistant to everything and I was going to die, to finding I was free of disease. Even my normally cautious oncologist was talking about the possibility of cure. It was a hard shift to make, even though the news was so good. I had almost lost hope, and had to relearn to dream. There were a lot of sleepless nights as my mind made the adjustment. The physical disabilities are still there. I have limited use of my right hand, a pronounced limp, and I can only walk a few blocks. I don't know how much will come back -- I want to play the harp again, to work with glass and metal, to race in the dragon boat, ride a bike. If I stay well, I'll have the time to relearn some of those things.
If one person is responsible for my success against IBC so far, it's my husband, Pete. He has given up so much for me, and has been the only stable thing in my life at times. I want to live partly so I can repay him for everything he has done, but I'm not sure anyone could live long enough. I just want everyone to know that there is always hope, that there are survivors. Making contact with an IBC survivor made a huge difference to me when I was newly diagnosed and feeling overwhelmed by it all. It was the hope that it would do the same for others that led Pete and me to create first the IBC mailing list and then this Web site. The birth of a community of friends was an unexpected bonus.