My Breast Cancer Journal
April 17-April 23
Monday, April 17, 2000
The headache didn't go away, and so we spent most of our last day on the islands doing nothing. By evening, I was feeling melancholy and depressed at the thought of coming back to Phoenix and starting this fight again. Our vacation was a little interlude, a time when I could forget that I am a breast cancer patient and go back to being just Karen. It was a wonderful gift, and it ended too quickly. Now I am back, looking at stacks of reading I need to do, plus my regular To Do list. It's overwhelming. A kindness from an old friend: my college roomie, Terri, sent me some Godiva chocolates for my birthday. They were the first thing I saw after greeting the kitties.
posted by Karen Weber Monday, April 17, 2000
Wednesday, April 19, 2000
It's rather disappointing. I called the lab this morning to see if they had the results back from the AFIP. Their response was basically: HUH? Not only did the pathologist not have a clue that he was supposed to be doing that, he didn't WANT to do it. He said I could come in and pick up the slides and do it myself. Even after I explained to him that patients are not allowed to make the contact, he STILL said he didn't see why he should do it. Or why I would want him to do it! He said that I could trust the diagnosis on the path report. I pointed out to him that it was a rare diagnosis that even experts have trouble agreeing on and that it was going to make a big difference in my choice of treatment. His response was pretty much the same as before: HUH? I kept wanting to ask him if he'd feel the same if it were his wife, but I didn't. It won't help to personalize my frustration. I need this guy to work with me. Still, I am NOT a happy camper and I told him as much. It's a 3-5 day turnaround once the AFIP has the slides in hand, and my oncology appointment is tomorrow. ARGH! Plus, he was actually going to hang up the phone without taking my number so that he could call and tell me whether he can send the slides or not. I have to say, the nursing and medical staff at that hospital are caring and compassionate. The lab people, however, are from a different zip code.
posted by Karen Weber Wednesday, April 19, 2000
OK, the pathologist just called and left a message (I was gabbing with Rick, so he got sent to voice mail). The slides will be sent out to the AFIP sometime today. He didn't leave any indication of how they are being sent, when we can expect reports, or when we can have another center take a look at the slides as well. I hope that the AFIP will digitize the slides -- that should make them more readily shared for a third opinion. The local hospital here apparently doesn't have that capability. This must be the digital divide I hear so much about. I'm sitting here a mere 5 miles from the hospital, listening to music, talking on the phone and enjoying a high speed connection to the Net on a single phone line, and the hospital has no Internet capability. Clinton talks a lot about wiring the schools, but it's my opinion that wiring hospitals should be just a big a priority, particularly small hospitals. Telemedicine provides access to the world's authorities, but only if you're wired. All hospitals should be wired.
posted by Karen Weber Wednesday, April 19, 2000
Thursday, April 20, 2000
Well, today was the big visit with the oncologist. I was pretty scared, but he was very nice. He was also respectful and said all the right things about who was going to be making treatment decisions (me! it's my body!). He said that he agreed with the decision to get a second opinion, but he also said that in almost all of the cases where his patients have done that, the second opinion has agreed with the pathologist who did the work on my tissue. He said that if it came back and didn't agree, he'd recommend sending the tissue to Mayo next. In that case, I'd also like to track down someone who is working or publishing on medullary breast carcinoma. At any rate, he is not recommending chemotherapy if it is medullary. If it's not, well, then we'll want to hit it with everything we've got because if it's not medullary, it's one really nasty beastie. But he was very encouraging about the quality of the pathology studies done at this hospital, so we are hoping and praying for this one to be right on the mark.An oddity: hospital policy says that all breast cancer tissue will be testing for estrogen and progesterone receptivity, but for some reason mine wasn't sent out. That is a disappointment to me. We have been eagerly awaiting that finding. He feels strongly that it will be negative, but says he's learned to wait for the path reports. If it's negative, then we don't have to worry about medications. If it's positive, he'd recommend tamoxifen. We talked about raloxifene, which is used for prevention of osteoporosis and seems to prevent breast cancer in women at high risk. I'm wanting to start on that anyway, given that I'm supposed to be sedentary to protect my knee and I'm worried about my bones now that I'm off estrogen. He says that the current studies don't really address whether raloxifene prevents recurrence, but he didn't say he would say no either. Particularly since I'm already wanting to use it for my bones. If the estrogen receptivity comes back negative, it's no big deal. If they come back positive, then we'd have to figure out what would happen if I took both, or if I would want to chart some new waters and take just the raloxifene. Probably another 10 days to get the results back. Should have had those early in April. He's not sure why they weren't sent out.
We talked briefly about possibly foregoing the radiation therapy if the second opinions on the pathology come back agreeing that this is medullary. He said that he can see both sides. It won't be up to him. I'll make that decision with the radiation oncologist, but he said to bear in mind that it is much easier to kill these beasties the first time around. When breast cancer recurs, things get really ugly. So that is something I'm going to have to research some more before we meet with the radiation oncologist.
All in all, it was a really positive visit - and there have been too few of those lately. I liked the oncologist as a person. He allowed me to talk. He was honest about areas that aren't in his domain. He didn't pull a typical doctor power trip. Neither did my surgeon. So far, I'm really happy with the doctors I'm working with :-)
posted by Karen Weber Thursday, April 20, 2000
Friday, April 21, 2000
Well, I just got back from the hospital and talking with the pathologist who actually did the work on my tissue. She was very supportive about the need for a second and third opinion. She said if it were her path report, she would not be relying on a single observer's diagnosis in this case either. She also found a copy of the estrogen receptor test for me and the results of the HER-2/neu test stunned her. She said that this finding should definitely be considered in the review of the diagnosis of medullary carcinoma. My reading was extremely positive, and this is not typical of medullary carcinoma. So all that good news from yesterday may be out the window. I need to start doing some reading on HER-2/neu now. I'll blog some links about it as I go. Here's one from Oncolink: NCI/PDQ Citation: HER-2/neu in node-negative breast cancer: prognostic significance of overexpression influenced by the presence of in situ carcinoma.
posted by Karen Weber Friday, April 21, 2000
This article is about Herceptin, which is used in women who are HER2/neu positive to combat spread of cancer: OncoLink@ASCO98: Monoclonal Antibody that Binds to Breast Cancer Cells Helps Stop Cancer Spread and Shrink Tumors
posted by Karen Weber Friday, April 21, 2000
Here is more about Herceptin: OncoLink: OncoTip: Herceptin and Breast Cancer
posted by Karen Weber Friday, April 21, 2000
This isn't about HER2/neu, but it's a great article. I'm printing it out! Top Ten Decision Lessons
posted by Karen Weber Friday, April 21, 2000
Another excellent article: CancerGuide: Second Opinions
posted by Karen Weber Friday, April 21, 2000
I seem to be reading that the her2/neu reading isn't something I should get immediately upset about. Women who don't have breast cancer can have high readings of this - they would, however, be classified as high risk for developing breast cancer. So the results of this test may just indicate why I developed the cancer. The only information I can find on treatment indications are about metastatic disease, which I don't have. Here is an article written for the lay reader about her2/neu in breast cancer from OnHealth.
posted by Karen Weber Friday, April 21, 2000
Here is an article that compares 2 ways of testing for her2/neu: HER2 Testing. This article points to the increased number of false positives with the DAKO test protocol. That was the protocol used on my tissue.
posted by Karen Weber Friday, April 21, 2000