A Big Decision
Yesterday, I met with Dr. Fein, the medical oncologist, to speak in person at length about the Oncotype results. After I hadn't heard from him, I called on Thursday and found out from the person on the other end that he'd had the test for about a week. I was a bit miffed at not hearing sooner, but given that we're so close to the holiday and he'd been planning to be on vacation this coming week, I let it go. When I mentioned the delay to a few people, they all said the same thing, it couldn't have been that bad if he didn't call right away.
When he called me back, he went over the report, but wanted to meet in person. So, Marilyn and I returned to his office yesterday afternoon.
My Oncotype recurrence score is 18, which is on the lower side. There are many published studies on Oncotype scores. The report Dr. Fein provided refers to percentages based on "Real World Evidence of SEER Registry Outcomes in Patients Treated Without CT [chemo therapy] Based on RS [Recurrence Score] Results." I had to look up the SEER Registry and found that it is a National Cancer Institutes' Surveillance, Epidemiology, and End Results (SEER) Program. They've been collecting data on different cancers since 1975, although the Oncotype data spans between 2004-2015. Also, they only collect data from slightly over half the U.S. states, including Jersey.
The Oncotype report groups women with my type of early-stage breast cancer into 5 different recurrence score categories. I fall into the one ranging from 16-20. The SEER registry results say that women in my range who do not get treated with chemo therapy have a Breast Cancer Specific Survival Rate of 96.7% after 9 years.
However, for my specific prognostic factors (2 cm tumor, 1 of 2 lymph nodes positive, 3 mm of cancer on the afflicted lymph node, positive for both estrogen and progesterone, negative for HER2, and a high Ki-67 proliferation rate), my percentages were a bit different.
With Tamoxifen or an aromitase inhibitor (plus radiation) alone, my "distant recurrence risk [of getting breast cancer anywhere in my body] at 9 years" is 16%. Dr. Fein further explained that based on the not-yet-published RxPONDER trial results, the risk for premenopausal women who had chemo drops another 3%.
When it came to recommending chemo or not, the report was gray. It said, "CT benefit for this group cannot be excluded." Which is not a solid "Yes," and that means that I have a decision to make.
I've spoken with a few people and joined the Komen Breast Cancer Group on FB. I reached out to the members to ask for their experience. Those in the group with situations similar to mine did not opt for chemo.
When Dr. Fein first called me and briefly explained the results, he did not make a recommendation. For the last couple of days, my gut feeling has been that a 3% difference in recurrence rate isn't enough for me to get chemo, especially with my yard-long allergy and reaction list to medications and other chemicals. So, I'm leaning away from it.
But, I kept an open mind and asked him what he would recommend if I were his sister. He said he was perfectly comfortable if I made the choice to only do the radiation and the Tamoxifen. But he also said he would recommend the chemo. It wasn't a strong recommendation, though, and he said he wasn't "hitting me over the head" to do it.
I am seeking other medical opinions, and will meet with the radiation oncologist, Dr. Desai on Tuesday. I'll need to decide within the next two weeks, because if I do opt for chemo, Dr. Fein will need to get that started by the second week in December. The Thanksgiving holiday makes it difficult to get a second opinion right away, but I hope to connect with another oncologist through a contact at the RWJ Cancer Institute.
In the end, recurrence is possible either way, even though my prognosis is very good and I have an 84% chance of nonrecurrence in the next 9 years. Once again, Dr. Fein said that he believed that Dr. McManus got all the cancer and that I'm cured, but we still need to do something (at a minimum the radiation and Tamoxifen, both of which I fully intend to do) preventative just in case.
I did ask a lot of questions about chemo. Importantly, it's not just chemo when you get chemo. You also get a lot of other drugs including anti-nausea meds, antihistamines, and steroids, which send my typically low blood pressure through the roof. There are a lot of side effects and risks, including allergies and infections, which could necessitate hospital stays -- what you really want to avoid when you have a greatly reduced immunity -- and the extend the length of the treatment.
I would also become menopausal, but at 52, I'm expecting that to happen soon anyway. Oh, and I would lose my hair, which isn't a big deal (see also: buzz and crew cuts), although there are some women whose hair doesn't return after the treatment ends.
There's a lot to weigh. Recurrent breast cancer that spreads is treatable (depending on where it lands and how bad it gets), but not curable. Even if I get the chemo, the chances of my having a recurrence are not that different from those if I don't.
In either case, there will be a lot of what's called surveillance. Dr. Fein will run loads of blood tests to check for any changes or possibility of cancer 3 months after I start the Tamoxifen and then every 6 months for 3 years, and annually thereafter. When I become menopausal during the 5-10 years of estrogen blocker treatment, they'll change the drug to one specifically developed for lower hormones. I'll also be mammogrammed every 6 months for 2-3 years, then once annually. They won't do PET scans unless they have to because it's too much radiation.
To say that I'm seeking clarity on this is an understatement. I will do what I always do when I make any sizable decision: collect information, talk with lots of people, share about it in meetings (recovery), and pray and meditate about it.
As ever, dear friends and family, I appreciate your support, kind words and thoughts, good vibes, virtual and in-person hugs, gifts from afar, and love. Take care of yourselves, schedule those mammograms, and enjoy the holiday (if you observe).
Because folks continue to ask for it, here's the link to my list again: https://www.amazon.com/hz/wishlist/ls/1F3HNL09N3G7C?ref_=wl_share. I continue to add to it, most recently some new books and wool (now that I have no hair, my head gets cold, so I'm knitting myself new hats).
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