I visited Kevin Mortara, my oncologist, yesterday. I had a bunch of stuff to discuss with him, and it's interesting, because that's what it really is with our appointments...interactive discussions. In my opinion we have the perfect doctor/patient relationship: I stay current on the science behind my condition so that he and I can talk through things on the same level (well, maybe not the exact same level since I'm not a doctor!) and decide my course of treatment together.
Obviously one of the things we talked about is my new case and its pathology. I was troubled by the fact that they wouldn't test for Her2 this time. Before I met with Kevin, I emailed Walt Carney, who heads up oncogene science at Siemens Healthcare Diagnostics in Cambridge MA (he is one of the guys I interviewed a couple years ago when I wrote the BC feature story for the Scene; we have stayed in touch because his research involves Her2 cancer). I was looking for a second opinion about the pathology of this new case, and he checked with a pathology friend of his who heads up pathology at a large Boston hospital). He concurred with the opinion that there isn't a need for Her2 testing in this situation because Herceptin is only given for invasive cancers. In other words, since I would not change my course of treatment if the sample turned out to be Her2+, there is no need to test. I asked that Kevin check to see how long BC tissue samples are retained because I want to make sure that for future reference that my samples are retained for the maximum possible time. With all the advances in cancer treatment now and expected to occur in the future, I want to retain the ability to retest these samples if doing so would open up opportunities for alternative future treatments should my cancer recur. The current cancer doesn't carry much risk of recurrence, but the case form a couple years ago still does.
The new was indeed staged at Stage 0 (zero). Cases are staged between 0 and 4. Stage 4 is when the tumor has spread to other body parts, such as lung, liver, brain, or bones. So if you have to have cancer, stage 0 is the best way to go! I will not need any further treatment for this new case. Tamoxifen is only indicated when there is breast tissue left to save. Many times it's women who undergo a lumpectomy who use Tamoxifen for usually five years post-treatment. I think the stats are that if I took it, my chances of recurrence change by a really tiny number, and this case doesn't have high odds of recurrence anyway. So I'm pretty happy that I don't need to pursue any follow up treatment.
We also discussed my ongoing Herceptin treatments. Even if I hadn't developed this new case of cancer, I was contemplating discontinuing Herceptin. Women with Her2+ breast cancer who have received ongoing Herceptin for metastasized cancer have sometimes gotten to the point where they stop responding to Herceptin. In case I end up with mets in the future, I want to keep Herceptin in the "bag of tricks." So last week was my final injection, hopefully forever!
With Herceptin out of the picture, the only thing I'm still doing is getting an annual brain MRI (I'm sure my employer, which is also my health plan, will be happy about the cost savings!). I may also start getting the Bayer serum test (the one developed by Walt Carney's team). I'm re-reading some of the journal articles about it and will talk to Kevin Mortara next week about starting it. This test checks for Her2 markers and has been shown to be an effective way to monitor whether there is tumor growth somewhere in the body. But if mets develop that are not Her2 I don't know that there is a test for that. What's interesting is that a primary tumor that is Her2 positive (like mine from a couple years ago) still contains cancer cells of other types, so a predominantly Her2+ tumors can still result in future mets that are of a different type. This happens when one or more of the minority non-Her2 cells are the ones to "escape." Mortara's advice was that, aside from mets to the liver, the best way to monitor for tumor mets is to pay attention to your body. Bone pain can indicate bone mets, and lung mets aren't that hard to discover because there are obvious symptoms. The liver isn't so easy. And I have the MRIs to keep an eye out for brain mets.
The final thing I asked Kevin Mortara about is the effect that diet and alcohol have on the odds of recurrence. And his reply was the same as I thought. Are there people out there who will tell you that you should eat no sugar and drink no alcohol, there is no data that is definitive. Everything in moderation is the way to go. So I went out and bought a four-pack of those double chocolate muffins from Copps and ate one when I got home. I'll saved the alcohol for the next day :-)
I was so curious about whether this new case, if it hadn't been caught, would have developed to be a similar case to the one a couple years ago. But I'll never know, and that's fine with me. I'm really pleased that this new case turned out to be such an early stage!
Val
P.S. I probably won't write an update for awhile, because I don't anticipate any new news. But that's a good thing!!!
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