jaycee49's Story: Living With Multiple Sclerosis and Metastatic Breast Cancer
jaycee49 is a member of the Breastcancer.org Community.
I don't know how you can tell your stage IV story without telling the whole mess, so here it is:
I was diagnosed with stage IIB in March 2014 after finding a lump in my left breast on self exam. I found a surgeon I really liked (she did the biopsy) and, after several tests (brain MRI, chest/lung CT) to see if it had already spread (it had not), I had a left mastectomy on June 5, 2014. I opted for no reconstruction. I must mention that I also have multiple sclerosis (MS), so having only one breast seems like a minor thing to me. I was diagnosed with MS in 1991 and have been doing fairly well with that. The MS is not pleased with the cancer and all that it entails, drugs especially. I got through the surgery well, although every time I have general anesthesia, the MS decides to paralyze some body part for a short time. Although the surgery was on the left, this time the paralysis was my right arm. It was unusable for about four months. NO DRIVING for four months. That really slowed me down, especially as it went into the time when I was getting chemo. My husband was still working in a very high pressure job (with very long hours) so he had to schedule things accordingly. Messy. He has since retired.
About three weeks after surgery, I was SENT (I did not choose) to my oncologist. For me, he is an important part of this story. If I were to tell you things he has said and done, you would be appalled. So why didn't I change? There are several reasons. 1. There are not very many oncologists where I live and mine is probably the best medically. 2. His nurses and support staff are the BEST. 3. I got used to his location and routine and didn't have the energy or motivation to do whatever needed to be done to change. The longer I go to him, the more powerful that last reason becomes. How do I change now after three years? For some reason I don't really understand, I can't.
I hemmed and hawed for all of July 2014. I saw this oncologist several times. He would push me a little harder each time to decide to start chemo. I hesitated because I knew what would happen. My gastrointestinal system works poorly. It may be due to MS or IBS or who knows, but I have serious problems. Abdominal pain and diarrhea are normal. I had a pretty good system for controlling these symptoms in place when I was diagnosed with breast cancer. I knew chemo would ruin the years of experimentation and pain that it took me to get there. But still, I took the plunge.
On Aug. 5, 2014, I had my first of what was supposed to be six TCH treatments. I felt REALLY bad three days later. I could not stay awake for five minutes and when I was awake, sat on the toilet and cried. I had severe abdominal pain and diarrhea. It was Friday, of course (all medical issues happen on Friday), so I called the 24-hour number and ended up talking several times to my MO's partner. He talked me through the weekend, giving me ideas for symptom relief. I felt well enough a week after that first treatment with all three drugs to go back for Herceptin alone. Herceptin never made me feel worse or bad at all but with all the side effects of TC, it was hard to tell. I did the two weeks of Herceptin alone and tried to prepare for another round of TCH.
My MO was NO help with side effects. He basically thinks I bring them on myself due to anxiety and just knowing about them. I agree, and I'm sure there has been research, that you are more likely to have side effects that you know about. But you cannot blame it all on that. I decided to be totally honest with doctors when I started this journey, so I told my MO that I take an anxiety med (Ativan) for sleep. I also told him I take an antidepressant (Remeron), also prescribed for sleep. So he decided that he had a depressed, anxious patient who already thought she would have gastro side effects and, of course, I did. He always blamed that on me. At least it felt like that.
I got sick even sooner after the second round of TCH. That was Labor Day weekend (of course) and I finally went to the ER on Friday night. I was admitted with colitis and stayed until Sunday afternoon. I didn't really feel any better but they knew it was side effects of the TC (at least someone did) and sent me home. I made it to the Herceptin a week later and told the MO I might have to stop. We waited while I did another weekly Herceptin and then I pulled the plug on the TC. He offered me TH alone but I thought the T was a huge culprit in the side effects. I finished the year of Herceptin.
I also had radiation to my left chest wall for about six weeks (every day) from the beginning of Oct. until mid Nov. 2014. That went really well due to great techs and an RO I really liked.
From Feb. until Aug. of 2015, I took tamoxifen. I stopped because I was having non-stop UTI's since right after chemo. UTI's are an MS thing. I've had hundreds. I thought the tamoxifen was contributing to that so I stopped after about six months. The UTI's lasted for about another month, then stopped. Cause and effect? To me, it was. To my MO, not so much.
Herceptin requires echocardiograms every three months because of possible heart side effects. In April 2015, my regular echo showed a pleural effusion on the left. Chest X-ray confirmed it. I had my first of six thoracenteses in May. I had one every four to six weeks for diagnosis because no cause could be determined. Each thoracentesis was followed by a chest/lung CT to follow a few small lung nodules I had had since the very beginning when those tests were done before surgery. My MO tested the pleural fluid for EVERYTHING. All negative. I started keeping track of the amount of fluid drained and the days since my last one. I calculated the amount of fluid forming per day. It kept going down until it was very little. BUT, in Feb. 2016, more and larger lung nodules were seen on the CT (both lungs) and also a small 'spot' on my shoulder bone. I don't remember which one and still don't know. In March 2016, the one lung nodule that was big enough (one cm) to biopsy showed metastasis.
MO said I could take an AI or an AI with a new oral chemo called Ibrance. My Medicare drug insurance would only cover Ibrance if I took it with letrozole so that's what I am taking. I've been on it for 15 months and every three months, I have a PET/CT scan. All have been okay so far. Nothing is getting smaller (except the effusion) but nothing is progressing. I feel okay most of the time.
The original cancer was HER2+. The mets are not. Herceptin?
I have two older sisters. Both had breast cancer. One was six years older than me. She was diagnosed at 43 (1986) and died at 48 (1991). The other, two years older than me, was diagnosed with stage 0 at 57 (2004) and is doing fine now at 70.
I have a 32-year-old son who just got married this past Nov. He is the light of my life.