Back in October I wrote a blog entitled “Ten day follow-up” about my post-mastectomy pathology results. I had just met with my surgeon and her staff, and my impression at the time was that my results were pretty favorable. I was pleased:
In the end, despite my many ultrasounds which indicated four different masses, the pathology found TWO. One measured 1.7×1.2×1.1 cm and still had 90% viable cancer cells in it. The other measured 1.0×0.8×0.6 cm and had 60% viable cancer cells. Both of the tumors had clean margins of 0.4 cm. Where did the other two go? Good question – they could have been misinterpretations of the ultrasound images, they could have been shrunk/killed by the chemo, or they could have been healed by prayer! The viability of the cancer cells in the tumors that were found indicate that my treatment was indeed effective – though not 100%- at killing off some significant portions of the cancer cells. Praise God! Twenty lymph nodes were removed in total – of those, two were malignant. At the time of my staging, I knew that I had cancer in at least one lymph node. In a perfect world, the chemo would have killed off the cancer in any/all lymph nodes. However, I’m really very happy that cancer was found in just two (10%) of those lymph nodes that were removed.
The following week, I met with my medical oncologist – the doctor who I started with at MD Anderson and who prescribed my six-month neoadjuvant chemotherapy plan. In that appointment, we again reviewed my pathology results. While nothing in the pathology had changed, the tone of the discussion was quite different, and Aaron and I left feeling far less happy than when we’d met with the surgeon. To be honest, I have been processing in my head and heart that discussion and its ramifications for the last three months.
While I had been happy that there were only two tumors found instead of four, and that those tumors were smaller than all of the ultrasounds had indicated, and that I only had two malignant lymph nodes out of twenty removed, my oncologist had quite a different take. After six months of chemotherapy, he would have liked to find zero malignant lymph nodes. Furthermore, he was definitely not pleased that one of my tumors had 90% viable cells; the number of viable cells should have been far lower after chemotherapy. Lastly, there was a marker test that was run on my tumors called “Ki-67″. Ki-67 is a cancer antigen that is found in growing, dividing cells but is absent in the resting phase of cell growth. This characteristic makes Ki-67 a good tumor marker. Research agrees that high levels of Ki-67 indicate an aggressive tumor and predict a poor prognosis. From what I understand, the Ki-67 score is basically the percentage of cells that are actively dividing. The Ki-67 score ranges are:
- Low Positive <17%
- Moderate Positive 17-35%
- High Positive >35%
My score was 80%.
Dr. Ibrahim suggested that I might be eligible for a clinical trial underway for patients with high residual cancer burden (RCB) after neoadjuvant chemotherapy and surgery. He referred me to a research nurse who computed my RCB – I was a 3 on a scale from 1-3 – and who said I was therefore eligible to participate in this study. The study is evaluating the use of the chemotherapy drug ixabepilone in breast cancer patients with high RCB at the time of surgery to see whether the drug will reduce the rate of recurrence (or lengthen the time before recurrence) and increase survival. 50% of the participants in the trial will undergo 4.5 months of chemotherapy with ixabepilone. The remaining 50% will receive no chemo but will be monitored just as closely, as a control group. Ixabepilone was approved by the FDA in 2007 for the treatment of metastatic or locally-advanced breast cancer, so this is not a trial to determine its efficacy as a cancer drug, but instead how successful it might be at preventing or delaying the return of cancer. It is a “meaner” chemo drug than the four I’ve already had – the main side effects are apparently nausea and neuropathy. Because it is a funded research trial, there would be no financial cost to me (or my insurance company) to participate.
When I first was told about this trial, my reaction was, “No way. No more chemo. Nope. I’m DONE. And definitely no more neuropathy.” Aaron’s reaction was, “Let’s throw everything we can at this disease.” We talked about it. We prayed. We verified that there was no Proverb which clearly says, “A woman is wise who participates in ixabepilone trials when they are offered.” I was told I didn’t have to decide until about two weeks from the end of my radiation therapy, so I put it out of my head and decided I would sleep on it (for a few months).
In the last few weeks, though, I’ve had to start thinking about it again. I asked my radiation oncologist for her thoughts on my participating in the trial, and she shocked me by recommending it strongly. She felt that there was not a down side (chemo side-effects don’t seem to concern her – I guess because most of them are temporary) to the study – if I would get chosen to get the chemo, I might possibly receive a treatment that could lower my risk of getting cancer again. And if I don’t get the chemo, I would still be monitored closely, and this is certainly beneficial as well. She pointed out that I am young, and she also reminded me that while her radiation plan is likely to be very successful at preventing local recurrence (in my left breast area), this clinical trial is intended to prevent cancer from occurring elsewhere, in the places that aren’t being radiated.
Then, last week, I met a young woman named Lisa G. while I was waiting for my radiation treatment. She was first diagnosed with breast cancer in 2007 and underwent treatment for it. All seemed well, and she went on with her life. In 2009, she had some pain in her chest; doctors told her nothing was wrong, but she pushed them until she finally got a scan. Which showed that she now had cancer in her sternum (bone). They told her she was stage 4. She travelled to Texas to get another opinion at MD Anderson, where they felt differently and have been treating her as if it was a local recurrence (i.e. the cancer moved from breast tissue to the sternum vs. the cancer moving from the breast to the lymph nodes to the blood to the bone). For some reason, I mentioned to Lisa that I was debating participating in this chemo study. She listened to my situation and then commented that although I hadn’t asked her opinion, she was going to give it to me anyway. She said that she’d sat in that chair and been told that her cancer was back, it was metastatic, and she was going to die. And she said, when you sit in that chair, you want to know that you’ve done everything you possibly could to prevent the cancer from coming back. Basically, you don’t want to say, “well I could have taken this drug or this chemo, but I chose not to.” She reminded me that while chemo sucks and can be really miserable, being told you are stage 4 is a lot worse.
I have a follow-up appointment with my medical oncologist scheduled for this Friday. I plan to ask him a few more questions about this drug and this trial and then make my decision. I guess that at this point, I am now leaning toward participating in this trial. Did God send me Lisa G. (like Debbie O. all those months ago) to help me make this decision? (in lieu of clear guidance from Proverbs!) I have to say that I think so. I have to keep reminding myself that even if I participate, there is only a 50/50 chance that I will be picked to receive the chemo.
I’m trying not to be glum about the prospect of 4.5 more months of treatment when I felt like I might be done at the end of the year. Or the prospect of losing my hair again, when it is finally thickening up and beginning to grow out. Or the scary prospect of my neuropathy coming back. I wanted to take vacations and work in my garden and do the Avon Walk for Breast Cancer next spring – what would chemo mean for all of those things? I’m trying to remind myself of that 50/50 probability. And to remind myself that it’s just 4.5 months and just six treatments (vs. the 18 I had before) and that I want there to be lots more springs ahead of me.
I’ll let you all know what I decide…and I do count on hearing your thoughts and advice on the decision I have to make.