Lots of Questions... Kind of Technical Answers

I'm sensing that a lot of people have more questions about my cancer and prognosis than are comfortable saying out loud. I will try to explain my situation as clearly as I understand it, with links to technical terms in case you want more information/detail. It does get to be overwhelming.

First, it is safe to say that my doctors agree that this second episode of cancer is not a new cancer. Rather, they think this cancer was always present, but was too small to be seen on mammograms or MRIs and too immature to respond to the chemotherapy or radiation.

Most people realize that the first thing to determine in a cancer diagnosis is the amount of disease with which you are dealing. This is done by "sizing" the original tumor that has been found, doing body and bone scans to look for cancer spread, and checking the lymph nodes and blood vessels. Based upon my tumor size and lymph node involvement, my original cancer (October 2006) was staged 2b -- on the very boundary between early and late stage cancer.

Some good news..... my original (and recent) bone and body scans have all came back with no signs of cancer elsewhere in my body. That is very encouraging. The more time that passes with clean scans, the better my prognosis.

My lymph nodes were checked in October 2006. The standard way to check for lymph node involvement is with a sentinel node biopsy. The surgeon removes up to three lymph nodes, and the nodes are checked right in the surgery unit for signs of cancer. If the lymph nodes show cancer, then all of them are removed and are evaluated to measure the spread of the cancer. In my case, the three lymph nodes were negative in the surgery unit -- no sign of cancer could be found on the first look. So, the surgeon left my remaining nodes in place, and I started chemotherapy later that same day. Unfortunately, in the lab, the pathologist found that 2/3 of my lymph nodes were positive for cancer. In an ideal world, all of the lymph nodes would have been removed for immediate evaluation. But, since I had already started chemotherapy, that was not an option -- surgery and chemo do not mix well as the risk of surgical infection and poor healing is a complication of chemotherapy. We will never know the extent to which my lymph nodes were infected (or not) with cancer. This makes it hard to evaluate the likelihood that cancer might have spread to other parts of my body. Clean body scans are excellent signs, but the question will always be up in the air.

So, this brings me closer to Dr. Miller's thinking : if cancer could exist in my breast -- undetected and unresponsive to chemotherapy and radiation -- then it is likely that a similar, resistant cancer could exist elsewhere in my body. My oncologist is treating me with similar drugs this time as before -- Dr. Miller's opinion is that those drugs were ineffective against the second cancer in my breast, so it is futile to think they will be effective against other cancers that might be elsewhere in my body.

My oncologist has approached my chemotherapy with a 2-stage approach: I am using Taxol and Gemzar through Labor Day, and then will start another combination of drugs after that. If anything good has come from my discussion with Dr. Miller is that my current oncologist and I are having more open discussions about drug options. But, the research with triple negative breast cancer is incomplete, and a variety of drug options exist. Two of the newest ones, Ixmepra and Avastin, are relatively new and still not well studied yet for adverse side affects. The side affects that are known (liver toxicity and uncontrolled bleeding) are not appealing. Avastin was initially rejected by the FDA as treatment for breast cancer in December 2007 , but by February 2008, the drug company had won its approval. A treatment victory for breast cancer patients, or the persistence of drug lobbyist and professionals?

My oncologist has tried to stay away from some of these newer drugs for me because of their toxicity and side affects -- for a patient who is showing no sign of cancer spread outside of the breast, why risk the other problems? Stick with "tried and true" chemotherapies. The problem is that those might not be the most effective. It's also possible that they might not be needed at all -- perhaps the cancer has always been only in the breast, and the mastectomy has treated it. We just don't know.

Finally, I will explain my cancer like I explain it to my boys --with a gardening analogy. Any good gardener knows that you weed your flower beds, and you spread Preen Weed Preventer to discourage new weeds from growing. Well, breast cancer cells are like the weeds. Most of them respond to the Preen (or drugs like Tamoxifen or Herceptin or Tykerb, if we are talking about breast cancer). But my cancer, triple negative, will not respond to any of these drugs. They are completely ineffective.

So, just as a gardener has to constantly tend to the garden looking for and pulling the stubborn weeds, my doctors have to constantly evaluate me and look for signs of new disease. Surgery is my "weed pulling," and chemotherapy is my Round-Up Weed Killer. But, it requires constant evaluation and diligence to react to the new weeds (i.e cancer).  Diet and exercise help, much like mulch helps in a garden to suppress new weeds, but they are ultimately ineffective against the most aggressive and determined weeds (cancers).

The reality is that only time will tell if my cancer is cured. The longer a triple negative patient goes without a recurrence, the better her prognosis. That begs the question of my current situation -- is it a true recurrence, or just a "surgery failure"? Only time will tell, and only God knows. This is the best I can do for the moment to try to make my situation more understandable...