Decisions, decisions

Hi all, again,
It's been a rough couple of days while I begin thinking about the next steps in my treatment and recovery. In preparation for meeting with Dr. Kenyon on Monday, I did some research online - reading research reports and such about the various treatment options. The bottom line is that, in general, Her-2 positive breast cancers are more aggressive, and more likely to recur and spread to other organs. But, interestingly, I haven't been able to find any statistics (at least, not yet) that say to what extent (i.e., which percentage of Her-2 positive cancers) it does these things. The uncertainty is driving me crazy, because if it's a small percentage (i.e., 10 or 20% of Her-2 positive cancers spread or recur), then I might opt not to do Herceptin, but if it's larger, than I will.

So, below is Dr. Kenyon's best guess for my treatment. He said that this is what they would recommend in a worst-case scenario (which he didn't define, but probably means a large tumor, positive lymph nodes, and maybe even cancer spreading to other organs). Here's the prognosis for different treatments:

surgery alone (mastectomy) - 80% chance of recurrence or metastases beyond the breast

surgery plus ovary removal & taking aromatase inhibitors as a little pill - cuts the risk an additional 1/3 or down to 55% chance of recurrence or metastases

surgery plus ovary removal/aromatase inhibitors plus chemotherapy (carboplatinum and taxol) - cuts the risk an additional 20% (20% of 55%) which means an additional 10% down to about 45% chance of recurrence or metastases

surgery plus ovary removal/aromatase inhibits plus chemotherapy plus Herceptin - cuts the risk an additional 50% of the 45% down to about 20-25% chance of recurrence or metastases

All the extra treatments beyond surgery are to either get rid of cancer if it's already in my body or to prevent it from going elsewhere.

BUT, I don't fit the "worst case scenario". Negatives are that the whole breast had cancer throughout the tissue and also that it's Her-2 positive. Estimates are that these tendrils have been there in that breast for 3-4 years. Positives are: 1) my lymph system in my breast did not drain anywhere, meaning that there was no lymph node involvement. The radioactive substance they gave me prior to surgery never left my breast via the lymph channels, not even three hours after administering the radiation; 2) my "tumor", such as it is, is not a lump, a full mass; instead I had tendrils scattered amongst normal breast tissue; 3) the margins of the breast tissue were negative for cancer, although those tendrils seem to have reached within a millimeter of the edges of the breast tissue; 4) it did not spread to the other breast (which was clean and there's about a 20% chance that Her-2 positive breast cancers spread to the other breast); and 5) all the previous tests (blood tests, chest x-ray, and pet-CT scan) showed no sign that it had spread anywhere.

Okay, cancer can spread in three different ways: 1) through the lymph system; 2) through your blood; and 3) through invading surrounding tissues. Indications are that: 1) the lymph system was blocked and 2) although close, the tendrils hadn't invaded the surrounding tissues. And, Dr. Kenyon said that after surgery, treatment usually involves both chemo and radiation - the chemo keeps it from spreading elsewhere in your body (i.e., organs that have a decent blood supply) but does not seem to be as effective as stopping the cancer in the breast and the radiation is supposed to stop it from recurring in the breast. Well, I had chemo five years ago, so I'm thinking that that destroyed whatever cancer may have been elsewhere in my body. The radiation - well, that might've caused the cancer in my breast to mutate because now it's a medium growing Her-2 positive cancer where before it was a slow growing Her-2 negative cancer. So, what Kenyon said was that the chemo is not as effective at stopping recurrence in the breast because the breast doesn't have a great blood supply. My conclusion: the only pathway out of breast (the blood system) for cancer to spread isn't great. This, to me, justifies not doing chemo since I would get relatively little benefit from it.

In addition, Kenyon called me a "vexing case", which might worry some people but for which I was happy because that means that I don't fit the standard profiles - all the recommendations are based on women with the worst case scenario mentioned above. In fact, I wanted to make the same argument with him - I don't fit the statistics and if I don't, the same treatment recommendations may not apply. So, he's going to present my case to the local tumor board (unusual tumor, blocked lymph system, prior treatment) and see what they say and he also recommended that I meet with another doctor - a Dr. Luoh at OHSU who researches Her-2 breast cancers. I'm hoping Dr. Luoh has some numbers for me (in terms of rate of recurrence or metastases for Her-2 positive cancers) and also maybe has seen a case like mine. That appointment is Dec 11.

In the meantime, I am doing much better today and especially after laying out my understanding of things in this blog, I feel even better about the choices I think I will make. I don't feel as scared that the cancer has spread elsewhere and I am not questioning my gut reaction to NOT do chemo any longer.

Our department secretary (Loretta Wardrip) has figured out for me (in less than 15 minutes!) how to post a picture on this blog (sheesh - I tried for at least 30-60 minutes before) and she will try to figure out how to post an audio snippet! This is kinda cool because this means maybe I can even learn how to post some of the cartoons and other jokes people sent me! That's about enough doom and gloom, don't ya think? Thank you, Loretta!
Take care,
Dee