My Breast Cancer Journal
April 24-April 30
Sunday, April 23, 2000
I forgot to mention in Friday's message that my estrogen receptor test came back positive. REALLY positive. Anything over 20% is positive. Mine was 90%. This isn't really typical of medullary carcinoma, but it's not unheard of either. Still, a shock. The oncologist said that if this came back positive, he'd want to put me on tamoxifen. The good news is that this would really improve my chances of survival, and since it's a treatment option that isn't really effective if you are ER negative, that's good news. The bad news is that tamoxifen has side effects - weight gain, possible cataract development, deep vein thrombosis (blood clots), stroke, and headaches. Oh, and hot flashes. Since I have started having hot flashes now anyway, I'm really looking forward to them being intensified. You can learn more about tamoxifen at AstraZeneca's Web site.
posted by Karen Weber Sunday, April 23, 2000
I should add that tamoxifen has some other side effects, most notably the development of cancer of the uterus. I'm not concerned about that as I've had a hysterectomy (thus the hot flashes). But in case you are at high risk for development of breast cancer and are thinking of using tamoxifen to prevent it, you should thoroughly research this risk.
posted by Karen Weber Sunday, April 23, 2000
Tuesday, April 25, 2000
Well, another day of keystone cops. The lab was supposed to fax the hormone/genetics report to the medical oncologist Friday. They were closed Friday, so I called first thing yesterday morning. No report received. They called over, and once again the lab claimed never to have run the report. I told her that they had run it, that they have copies of it, that I know this because they gave me a copy of it, that she needed to be more insistent about them finding it. No luck. Finally, late in the day I decided to call my surgeon's office to see if they had a copy. They did and they faxed it over to the medical oncologist. Phew.So this morning I have talked with the oncologist. Flashback to last Thursday - he said "It's fine to get a second opinion, but it's not really necessary. You can trust this pathologist." Back to today - he said: "We're not making any treatment decisions until we get the results of the second opinion." He said that it still could be medullary, but it certainly does warrant a second look. He especially didn't like the DNA index/ploidy reading (1.66% Aneuploid), although it's my understanding that's fairly typical of medullary carcinoma. I'll have to go back through my articles. He also didn't like the S-Phase reading (3.7%) although the lab report states this is a favorable finding. And it seems to me from reading that this is actually lower than one would expect for medullary. The pathologist was surprised, actually, at how low it was. At any rate, we are all of us - onco, path, and me - agreed that this thing needs another look, so I'm glad I pushed it.
Sticker shock: we got the lab bill for the hormone/genetics testing in yesterday's mail. Over a thousand bucks! Glad to have insurance, that's for sure!
posted by Karen Weber Tuesday, April 25, 2000
Thursday, April 27, 2000
Try as I might, I couldn't edit my blog yesterday and now I've forgotten what I was going to say.Part of it was about nighttime hot flashes. They are starting every night at around 11:30. They are very intense. Night before last, I could not sleep at all they were so strong. And it was like the hot flash switch was stuck in the ON position. I didn't have any off periods. I finally just got up and did some work. Last night, I was ready for them. I had prepared an ice pack, and when they woke me up at 11:26 pm, I went straight to the freezer and applied the ice pack to the back of my neck. And that's how I slept the rest of the night. Worked like a charm. I may buy stock in the company that makes those blue ice thingies.I see the surgeon this afternoon. I'm expecting to be discharged. Everything is healed. I had some soreness the other day, but I think it was from wearing a bra that was too tight. It went away when I changed. I guess I'll throw that bra out.
posted by Karen Weber Thursday, April 27, 2000
Saturday, April 29, 2000
Well, the surgeon was very happy with the healing, but he agreed with the ladies on the FIN list that the pain and swelling I'm having in my breast is lymphedema. The last 2 days, I have been unable to find any bra that I'm comfortable in. Last night, the hot flashes let up so I could have slept but I just couldn't get comfortable because of the swelling in my breast. I'm sure this is a mere foreshadowing of what radiation is going to be like. If anyone has any ideas on where to find a soft, fairly shapeless bra offering minimal support, let me know. The problem is that these kinds of things are unusual in my size.The surgeon didn't discharge me, He says I need to come back in 2 months. That's fine. He's a really nice person, and now that the surgery is past, I don't mind going to see him. He did clear me to start treatment, but of course, we don't know yet what kind of treatment I'll be starting. We are still waiting on the second opinion from the AFIP. I thought it was possible that we'd get that Friday, but it must not have come in. I'll call the lab Monday to make sure it's not just sitting there gathering dust.
posted by Karen Weber Saturday, April 29, 2000