to lump or not to lump? so many bad puns. but it’s more fun coming up with bad puns than it is figuring out whether i want to, or am ready to, lose a breast permanently. or navigating the various doctors’ opinions whose job is it to figure out whether or not i need to.
we had a second opinion with a UCSF surgeon and appointment with a radiation oncologist last week. we learned a lot, and unsurprisingly, we still don’t have a clear plan for my surgery on february 19 (spoiler alert of this whole entire post). we do know i will need 5 weeks of radiation, going in each monday through friday during that time for some beam-age.
chemo is an systemic treatment that treats the overall person and rapidly-dividing cancer cells, and radiation and surgery are the more localized parts of treatment. surgery has traditionally been done first, but in some cases the field may be moving to the approach we took for me.
because the cancer was in my lymph nodes, radiation will be important even if those nodes are removed in surgery and no matter what surgery i have. i was disheartened to learn this, because it’s another round of crap that makes you tired, makes your skin get weirdly burned, makes you go into the doctor every day, and makes you at risk for more cancers in the future. also, the radiation oncologist–she’s awesome, although very conservative in her approach, which is conservative to save lives–was focusing on the cancer in the lymph nodes under my arm and one in my central chest. the lymph node in my central chest was something mentioned to us after the PET scan only once and a long time ago. the last MRI showed no cancer there, but i was bummed to do the math on the cancer being mostly on the right side of my breast and spreading into the armpit lymph nodes, and wonder how it jumped to the center of my chest. believe me, that kind of shit really gets up in your head (e.g., how and where else did it jump?). the radiation will also treat the chest wall and skin to help reduce chances of local reoccurrence.
on surgery, it’s more complicated. here’s the skinny:
my first surgeon strongly recommends a mastectomy with radiation and reconstruction. i have a long life to live, so we should take the most aggressive approach to lower my chances of local reoccurrence as much as possible.
the second surgeon leans toward breast conservation with a lumpectomy, suggesting that i could have a mastectomy at any point if needed. why should i lose a breast if i don’t have? if i get the mastectomy and the pathology comes back that i was cancer free, will i be upset?
they each have medical reasons for their conclusions. #1 says that i have 10cm of scattered DCIS (ductal carcinoma in situ, or cancer that hasn’t left the duct yet). chemo doesn’t do anything to kill the DCIS, so it’s likely still there. a lumpectomy wouldn’t remove it, or to get completely clear margins and remove it fully, would only leave me with 1/3 of a breast. the DCIS could turn into invasive cancer at any point (e.g., tomorrow, 6 months from now, 6 years from now).
2 says that who knows if the initially diagnosed DCIS is really still DCIS–it might just be calcifications, which may or may not turn into anything. ever. since i’ll be actively monitored with annual MRIs and mammograms each 6 months apart and clinical exams between, we’ll know what’s happening. if anything changes, i could have a mastectomy then. she said in 5-10 years, we could look back on women like me who had fabulous responses to chemo and realize we’ve “surgically mamed” them for no reason. i love that she, as a surgeon, was hopeful her job would become unnecessary.
the interim conclusion: have some more scans since finishing chemo (blogging live from my MRI waiting room, btw), do a core biopsy of any stuff left (DCIS? calcifications?), and then figure it out. if the biopsy shows DCIS, then there is no choice and mastectomy it is. if it just shows calcifications, then i have a choice, and it’s whether or not i can live with (or lose) a breast that once betrayed me for completely unknown reasons (too much organic kale? too many bay area pollutants in the air from chevron and silicon valley and cars? too much radiation from air travel? too much tap water from old pipes in old buildings? too many years on the pill? too many electronics? too much time on the couch or the desk chair? too much BPA from cheapy plastic containers filled with too many shampoos with parabens?) (i could fill that parenthesis for hours, believe me).
have i lost you yet?
my case was presented before the UCSF tumor board a few weeks ago, and there was no concensus among the doctors on my surgical plan. so we’re in good company. results from today’s mammogram and MRI and thursday’s biopsy will all go back to the tumor board on monday for input. usually the tumor board is something you want to avoid, because it’s a place for doctors to debate approaches for really complex, tough cases and their best course of action. in my case, it feels indulgent to get all that doctor brainpower behind a surgical choice, but i’ll take it.
the good news is that we may have options because of my response to chemo. all of the doctors were emphatic about how few cases they see each year with this kind of response. call it spontaneous healing (i don’t, mom, because i technically still have cancer) (although i do think all of you have helped this happen in many ways) or improvements in science or a treatment plan tailored to my situation. whatever you call it, it’s awesome. these are the oxymoronical good problems to have. that being said, there aren’t statistics that include me. none. most long-term studies are on post-menopausal women, or don’t include Her2+ women because it’s such a new marker. the scientist in me gets nervous. i really want to see the data to believe it.
beyond the whole life-saving and local reoccurrence things, which of course are the biggest factors, there are some other things rolling around in my head on surgery.
when you throw in radiation with a mastectomy, the chances of complications during reconstruction surgery go way up. it’s not just infections–it’s losing the breast and having a concave space left to fill with various prosthetics. kind of makes clothes shopping or swimsuit wearing more involved than it already is. i could have reconstruction later, but by that point, a person is often surgery-ed out.
with a mastectomy, the surgeons think they could save my nipple. often times, it has to be removed based on the location of the cancer. other times, if there isn’t enough circulation, it could fall off after surgery. like, “oops there goes my nipple!” it’s not funny but it’s very funny. many women with mastectomies remain without nipples, get them tattooed on, or surgically reconstructed from some skin graphs.
with a mastectomy, i lose all mammary glands in that breast. i won’t be able to breast feed. even with a lumpectomy and radiation, i may still be able to breast feed a tiny bit from that breast. beyond all the nicey nice benefits of breastfeeding like bonding with the baby and giving it A+ nourishment, these are some other more crass, but just as real, reasons it’s of importance to me.
some of you have asked why i don’t just get both breasts removed. this article in the NYT last week discussed the growing trend of women having double mastectomies and doing it prophylactically. there is no medical reason for me to have bilateral surgery. my left breast is fine and i don’t carry any known breast cancer genes. for me it would only be emotional. and in talking to another BAYS woman, she thought having a double would eliminate her worry about reoccurrence or mestastisis. it didn’t. breast cancer can still reoccur in your skin or the chest wall, even after you remove your breast tissue. and we all know the story on mestastisis–no one knows why and how, except that it happens. oh, and with a double, breastfeeding is completely out.
while the plastic surgeon is amazing at what he can do to get my 2 breasts to match, it is not a forever match. if i gain weight, only one breast gets bigger. if i have a baby, only one breast stretches. i can always have surgery to correct them, but that’s just annoying.
with an implant, it’s not a forever thing. it can rupture. it also ages so will have to be swapped out at some point. so it actually is a forever thing in that i’ll always have to deal with it.
given the length and intensity of this post, you can tell i’m really up in this decision, with pros and cons out the yahoo. chemo is a memory but a relatively close one. just being a week out of AC (screw AC forever!!!!), chemo side effects linger and will do so for awhile as we know (e.g., digestive issues, weirdly infected fingernail, fatigue, random port oozes, 6 eyelashes [i counted] desperately hanging on, hormonal zits, and an overall cancery appearance). breathe in, breathe out.
all that crap being said and out of my head, i’m thankful each day for waking up. sometimes i’ve even surprised. i’ve gotten to hang out so much with friends after shaking off the fog of AC last week. good stuff (aka chemobration) (thanks, sarah)–dinner out, wine tasting in sonoma (it was DELICIOUS–pic attached), walks in the sunshine with stunning views of the city, and tea in the backyard. and i might even go into the office this week on a doctor free day, do a mud run (or in my case, crawl) with BAYS and some yardwork this weekend, and have a good ol’ fashioned beer with friends over the super bowl (yay ‘niners!) (the first time i’ve ever said that in my whole life. #fairweatherfan).
life continues moving forward, and there is more goodness to come, with or without a breast.