To do chemo or not to do chemo...
Today I met my medical oncologist at UCSF. Nervous about who I would get (after all, my surgeon wasn't exactly a match for my personality and she's the one who chose my oncologist) I did as much research as possible beforehand. What I learned gave me a lot of confidence – she appears to be very smart involved in lots of studies, and someone who has spoken at the annual San Antonio breast cancer symposium. But would we get along?
I didn't need to worry. My oncologist turned out to be a fast-talking doctor, well-versed on the latest data, who seemed to quickly assess what I understood so she could not waste time with the basics. Which is not to say that she isn't compassionate--she definitely is. Of course, because it's UCSF, I didn't actually get to see her until an hour or so after our appointment time, but I'm almost getting used to that.
She examined me and removed the leftover stitches that the surgeon couldn't remove on the 3rd. As a present for playing on The Cancer Show, I got to take home another set of tweezers and tiny scissors. I felt like a fool shouting "Wait! Can I keep those?" as she lifted them toward the medical waste bin, but she said she was happy seeing them put to use.
When we started talking, I told her about yesterday's excitement with the pelvic ultrasound. She pulled up my ultrasound report (this is why a well-networked medical center is nice). As it turns out, the report doesn't make note of any problems at all. Must have been a shadow or something—a waste of 24 hours of worrying. (Come to think of it, time spent worrying is almost always wasted!)
My oncologist also gave me a copy of my pre-op bloodwork. As it turns out, for someone so tired, I'm remarkably healthy. Maybe I'm just lazy?
Then, we settled in to talk about treatment options. Because I chose to have a lumpectomy rather than a mastectomy, it's a given that I will do radiation treatment. The outstanding questions are what type of hormone treatment I will do and whether or not I need chemotherapy.
With hormone treatment, the standard of care is to put pre-menopausal women on Tamoxifen. Post-menopausal women have the option of newer drugs such as aromatase inhibitors (AIs) that may be slightly more effective. For a pre-menopausal woman to take those, she must be first forced into menopause, first.
She pointed out that they could consider supressing my ovarian function temporarily with Lupron or Zoladex, so that they could give me one of the AIs. I asked, "What if I had my ovaries removed?" She very seriously said that before I make that decision, I need to consider that I have no idea what menopause will be like for me. She recommended that if that's what I was interested in doing, I first have my ovarian function suppressed chemically, as sort of a try-before-you-buy program. As she cautioned, "It's not like we can put 'em back!"
(It's true that if I do chemo, it will probably put me into menopause. Whether that is temporary or permanently is something we don't know in advance.)
Chemotherapy happens before radiation and hormone treatment, so that is the more pressing decision. Cancer treatment has come a long way since when my mother was treated (mid-70s). Now only a portion of women with early-stage breast cancer are given chemotherapy. It's all about assessing the risk/benefit ratio. It's part statistical analysis and part guessing…and, of course, the patient has a say.
With the results of the Oncotype-DX test not yet available, my oncologist pulled up the Adjuvant Online tool, instead. This is sort of a predictive modeling tool where the clinician enters information about the patient and the cancer (such as age, state of health, whether the cancer is hormone receptor positive, etc.) and the tool calculates the chances for local and distant (metatastic) recurrence. Then it estimates the benefit of various treatments at reducing that risk.
I didn't get a printout of the information, but going from memory, it seemed like my risk of recurrence (assuming radiation therapy) is about 25% before further treatment. Hormone treatment (anti-estrogen therapy) would take about 9 or 10 percentage points off that. Chemotherapy might take another 5 or 6 points.
Of course, there are additional factors. The chemotherapy regimen you choose will probably impact the estimated risk reduction. I already knew that I wanted to avoid Adriamycin/Cytoxan (AC) if possible. The cardiotoxic affects of adriamycin are worrying to me, considering my family's genetic risk of heart problems She mentioned that just last December, Stephen Jones, MD, released a study that showed the Taxotere/Cytoxan combo to be especially effective even for early-stage breast cancer. Taxotere doesn't carry the heart risk of Adriamycin and could give me an extra percentage point of effectiveness. It still has plenty of potential side effects—it's chemo, after all—including temporary neuropathy, nausea, fatigue, low white cell count, rash, potential severe allergic reaction, but not the heart damage.
Which brings me around to what I'm going to do. Now, I know plenty of friends who would choose chemo if it reduced their risks by even one percentage point. But I'm not one of them. I'm not sure if I'm foolhardy or simply less afraid, but the numbers that Adjuvant Online was reporting were not compelling enough for me to raise my hand for the IV bag of poison. I know from watching my mother go through it that chemotherapy can be hell. I've also read enough to know that it can have side effects that become permanent. I have to be really sold on the benefits, which is what led me to decline chemo.
My oncologist said that most patients choose chemo even with less benefit than my stats suggest, but she sees it as an individual choice. We agreed that because the Oncotype-DX is a more strongly predictive test, we'll use those results to decide. Oncotype-DX gives results in three ranges: low, medium, and high risk. If I'm medium or high risk, I'll do chemotherapy with a clear conscience. We'll just have to wait and see.
In the meantime, she ordered a MUGA scan for me since I was concerned about my heart. She says she'd need to have my heart scanned if I did chemotherapy, anyway.
When I was leaving the exam room (it was around 6 pm) I saw the nurse who handles testing and so we stopped to chat. My surgeon then appeared—apparently she was coming from surgery—and joined in for my latest animated tale of what's up with Alix's breast. Now that I feel I understand her more, I'm no longer irritated by her. Besides, she laughs at my jokes!
It was a long day and I have a lot to think about—but unfortunately I don't yet have the data I need to make any decisions. I'll be tapping my fingernails until the results of the Oncotype-DX test arrive, though. They can't come too soon.
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