Today I had a long (2+ hours), informative meeting with a new doctor at UCSF, a medical oncologist named Dr. Majure. Like all the other staff I’ve dealt with at UCSF, she was lovely and smart and compassionate and I liked her a lot (despite the fact that she’s a newly minted doctor in her 30s and thus a little harder for me to take seriously than the ones that are older than me). She double-checked all my overall health and previous Hodgkin’s treatment details, patiently answered my somewhat scattered questions and gave me a bunch more information about Tamoxifen (while the side effects are not as scary as I thought they might be after my internet research binge, she basically shot down Dr. Ewing’s theory about a lifetime of Tamoxifen being any kind of a good idea). Then we talked about some of the details of my recent pathology reports that had previously not been flagged for attention (or at least *my* attention).
Up until this point, all my conversations around pathology had centered around how delightfully small the tumor was (1.1 cm), how good it was that it was so responsive to estrogen and progesterone (because that meant we could treat it with hormone therapy), and how great it was that the lymph nodes were clear of any sign of cancer (so far). So I was starting to feel pretty optimistic that I’d be getting away with “just” surgical treatment followed up by a few years of prophylactic Tamoxifen. But in what seems to be almost a UCSF tradition now, I found out some new information that really changed things—plot twists in the saga, if you will. Dr. Majure pointed out that there were some additional things in the pathology reports that she was concerned about, namely that my tumor was typed as “Grade 3” (e.g. relatively fast growing) and my Ki-67 measurement (please don’t even ask me what that stands for, I’m too afraid to Google it) was over 60% (when ideally you want that number to be somewhere around 3%, I believe). To her, these were signs that the type of breast cancer I have is a fairly aggressive kind, and so unless the oncotype results come back with a different assessment (which she felt was unlikely, but we’ll do it anyway just to make sure), she said she would recommend chemotherapy in addition to hormonal therapy, in order to make sure that any remaining cancer cells would be blasted out of my system wherever they might be hiding before they could make new tumors. And I’d need to start that ASAP.
It will probably come as no surprise to learn that I was greatly disappointed and upset to hear this.
“But I’ll give you the kinder version,” she twinkled, and then proceeded to lay out the supposed advantages of the Horrible Choice A chemo treatment plan over the Even Yet More Horrible Choice B chemo treatment plan. I won’t scare you with the details of Horrible Choice B, except to say that it would be considered less than ideal because of the elevated risk of secondary leukemia and cardiotoxicity (both of which I am already at elevated risk for because of the Hodgkin’s radiation treatments). Ok fine, so Horrible Choice A it is. That’ll be 4 individual infusion treatments, each 3 weeks apart (which is considered such a relatively brief course of treatments that I won’t have to have a port implanted in order to make the chemo-giving more efficient, so um, yay I guess). Each infusion will consist of two drugs: Taxotere (aka docetoxel) and Cytoxan (aka cyclophosphamide), administered via an IV drip over the course of several hours. Though it’s hard to guarantee specifics until I actually try it, the usual side effects will likely apply: fatigue, nausea, hair loss, nail changes, mouth sores, fluid retention, diarrhea/constipation, muscle/joint aches, tingling of hands/feet, foggy brain, and my favorite (not): early menopause.
Well fuck. As if having a double mastectomy (and future reconstructive surgeries) hanging over my head wasn’t bad enough, I get extra bonus chemo on top of all that? This is not at all what I wanted, nor is it what I’d consider “kind” (except in comparison). I’m going to do it, because even though the thought of enduring multiple rounds of systemic poisoning and the associated side effects scares the ever-living shit out of me, I like that scenario a whole lot better than the one where I wind up enduring a slow and painful death by metastatic cancer. But I am not yet at the point of being brave and dispassionate about all this. Right now I’m more like “DON’ WANNA NOOOOOOO FUCK FUCK FUCK HOW CAN THIS BE HAPPENING TO ME?”
[Here we pause for a deep breath and maybe a few hugs or a little chocolate.]
Ok. So what else? Let’s see. On the positive side, Dr. Majure also reassured me that there were a variety of things I could do to help alleviate chemo side effect symptoms, like anti-nausea drugs and such. I’m going to look into alternative medicine support as well (acupuncture, massage, herbal remedies, etc). She also told me about a new solution that seems to help with hair loss called a “cold cap”, where you wear what amounts to basically a big hatful of ice while your chemo is being administered and this supposedly prevents the hair cells from taking up too much of the chemo drug and thus preserves at least some of your hair (but of course this cold cap thing is not covered by insurance and so must be rented at fairly exorbitant cost). I’m not sure if I want to do that or not...I think I need to talk to some other women who have tried it (UCSF has a program where they match you up with other peers who have been through treatments already).
All this being said, I think the new treatment timeline now looks something like this: meet with the “chemotherapy educators” to talk in detail about what to expect, then start chemo at the end of January (once the oncotype results are back, and frankly, after my birthday because fuck no I am not having chemo around or on my birthday). I would finish sometime around the end of March, take a month off to recover, then have the mastectomy surgery sometime around the beginning of May. Recover from that and go through all the implant expansion for however long that takes, and have the final implant surgery sometime in maybe late July or early August? I dunno. I can’t even think that far ahead.
Actually I think I have to stop thinking about all this and go to bed now. I still have to get up in the morning and get the kids off to school and do the zillion other things I always have to do, no matter how much I feel like staying under the covers and moping. Life goes on, and that’s mostly a good thing. More processing to come, I’m sure.