Happy Post-Valentines Day from Your Local, Dogged Breast Cancer Blogger

Dear Readers,

Yep, still here. I'm tellin' ya, you just can't get rid of me. My writer DNA may slow down at times, but it never really goes away.

I spared you a recounting of how I felt after I went to see the surgeon for my first check-up after the surgery (one week after), because although I felt surprisingly well, physically, I felt not-surprisingly depressed by the surgeon's recommendations re: What she thought I should do next:

"You have four options:

1) Do nothing else [she rolled her eyes at this one, though]

2) Let me go back in, in two weeks, and take out another 15 to 20 lymph nodes [to be on the safe side; there is no way of knowing if any of those nodes would be cancerous, but surgeons prefer to err on the side of taking healthy nodes rather than risking leaving any cancerous nodes behind, even though getting every single cancerous node does not necessarily improve your length of survival and DOES increase your risk of lymphadema]

3) Get radiation instead of any further node removal [but she made it clear that she thought this was not as good of a choice as node removal]

4. Do both node removal AND radiation

She left out the option of chemo, probably at least partly because she knew I'd say "forget it."

And she added that I should, without question, get started on an estrogen-blocking drug such as tamoxifen or Arimidex, post haste.

After the appointment I dragged myself home and spent the next week pretending to be upbeat and positive, but actually feeling lost, confused, scared and depressed. . . not because of the mastectomy but because of that crappy list of crappy options.

I felt ALMOST certain that I wouldn't choose radiation or any more node removal.

The only two options I could bring myself to consider were either "Do nothing" (except more pure alternative treatments, but I didn't know which ones) or "try again to take an estrogen blocker, albeit not tamoxifen or Arimidex (which I tried for a month four years ago and swore I would never take again because the side effects were such a nightmare), but maybe another one, such as Raloxifene, which might be less horrible in terms of side effects...and which is known to be protective rather destructive to the bones (a problem that, with Arimidex, greatly increases risk of osteoporosis).

The one bright spot on the horizon was my upcoming consultation with Dr. Mark Renneker. I figured that even though his recommendations would likely be similar to the surgeon's, at least he might be able to help me clarifiy details and/or feel less depressed, somehow. I also knew that we'd go over the pathology report that I got after the mastectomy, in a much more thorough way than the surgeon went over it with me (quickly, minimally, nothing said that added more depth to my knowledge or understanding).

Much to my surprise and elation, the consultation with Renneker went much better than I expected it to. We did go over the path report with a fine toothed comb, and the first thing he said to me was, "Jane, this is GREAT!" What he meant was that it is great within the context of what it IS. That is, the fact that I had three positive nodes was not great, but the fact that they were the least aggressive cancer that a cancer can be (less aggressive, in fact, than my original cancer four years ago) was great. My "Ki 67" was also better than four years ago, down from 15% to 5%.

To me, this says that although I got a recurrence, my alternative protocol might well have had something to do with this "less aggressive" direction that the cancer has gone in. For example, one thing I've heard/read is that although women who opt for chemo and/or radiation may have fewer recurrences, when they DO have recurrences, those recurrences tend to be more aggressive  cancers than those of women who have done hormone replacement therapy for a while.

Mark also explained some stuff to me about something called "reverse mapping" (important info. for any woman concerned about node dissection and the risk of lymphadema) and also about the standard test for Her2 positivity or negativity. I am Her2 negative and hormone receptor positive. If I were Her2 positive, my treatment plan would be very different and would almost certainly include the drug Herceptin. Well, at a recent breast cancer conference that Renneker went to in San Diego, one of the speakers was the man who invented Herceptin. And one of the things he talked about was that around ten percent of all women who test negative for Her2 are actually positive. The good news, however, is that there's a better test now, the FISH test, which cuts the rate of false negatives way down. But do all doctors know about or recommend the FISH test? No. Change is slow. It helps to have a doctor like Renneker who can give you the lowdown on new developments. Then you can go to your doctor and inform THEM.

Also, Renneker did not concur with the surgeon re: the need for more node removal, and his list of options totalled seven rather than four. 

One of those options was, in my opinion, brilliantly innovative. He came up with it for another woman who had a case similar to mine and who also had a mindset similar to mine. She too had refused radiation, further node removal,  and systemic estrogen-blockers. She  told Renneker that she'd rather die than ever take Arimidex again.

So they came up with a "compromise," which was to try having Arimidex made up (at a compounding pharmacy) into a topical cream, which she would apply to her armpit ONLY, because the armpit nodes were the main area of concern re: cancerous nodes that might still be there. (This "solution" was indeed a compromise, in that it didn't address the possibility of mets already lurking somewhere else in the body. But at least it addressed the area of most obvious concern, and offered an option that I think is much better than node removal or radiation.)

I asked Renneker why the cream wouldn't just be absorbed and become systemic, the same as if it were being taken orally, and he gave me an explanation that made sense but that I am now having trouble remembering well enough to articulate in print. I am going to ask him to repeat it so that I can write it down word for word when we have our next consultation (day after tomorrow).  I am 99.9 percent sure that I will want to do this instead of taking a conventional systemic estrogen blocker.

I have NOT ruled out the possibility, however, of taking an alternative estrogen blocker made from an herbal concoction devised by Dr. George Wong in NYC. Wong has come up with a mix of herbs that has a similar effect to Arimidex but is much less toxic. It will have SOME side effects, but not nearly as bad as the conventional blockers. And Dr. Wong can also add herbs that will help to ameliorate the side effects. I spoke to him on the phone yesterday - he returned my call as soon as he got back from a trip to London - and I now see a trip to NYC looming on my horizon, for a two-hour appointment with Dr. Wong.

To anyone actually made it to the end of this post, "THAT'S ALL, FOLKS!" For now.

Comments

[Lima]

What a wonderful NYC trip to make! Truly!

[harlan lewps]

Well, from down here thousands of miles away, I'd say to lose the last sentence and move the topic sentence up to the top. Nobody else will get that.