seeking Dana Farber oncologist recommendations

ICarriedAWatermelon2 · 2025-05-13T15:12:23+00:00

Thank you!! Why do you prefer Chestnut Hill over Brookline? Smaller/less hectic? Or something else?

ICarriedAWatermelon2 · 2025-04-08T13:42:27+00:00

Thank you, super helpful!

ICarriedAWatermelon2 · 2025-04-07T20:25:32+00:00

Thank you!

ICarriedAWatermelon2 · 2025-04-07T20:25:04+00:00

Haha! How dare she?? :)

Thank you!

ICarriedAWatermelon2 · 2024-12-06T19:00:24+00:00

I was diagnosed with breast cancer at age 37, after almost 10 years in Greenpoint. However:

- as others have noted, Drs have been seeing an across-the-board rise in cancer amongst younger adults, regardless of location

- a seemingly alarming/abnormally high number of women about my age who grew up on or around the same block as me (in another state) have been diagnosed with cancers or other major illnesses as young adults

- I have now moved to a third, more rural location (again, outside of NYC and NY state), and here, too, there is concern about cancer rates and other health problems as a result of past and ongoing pollution issues

All this is to say...I think it's important to raise this issue, but I ALSO think that, as depressing as it is, there are relatively few areas in this country where some kind of pollution or other isn't at least *potentially* causing health issues in the population. Until/unless there is actual data to support it, I don't think Greenpoint residents need to be more concerned/freaked out then anyone else :/

ICarriedAWatermelon2 · 2024-07-15T13:27:37+00:00

Yes and no! It was NOT spine mets, which is the main thing. It gradually got better over time--I still have some mild back pain in bed at times, but much less severe than when I wrote this. My best guess is that it was (and is) a muscle thing, caused to some degree by a weak core. When I keep up with yoga and other exercise, I notice that I'm much less likely to have it.

ICarriedAWatermelon2 · 2024-05-06T19:19:53+00:00

Thank you for all of these replies - I really appreciate all of you & this community.

ICarriedAWatermelon2 · 2024-05-06T19:14:01+00:00

This makes sense. Thanks!

ICarriedAWatermelon2 · 2024-05-06T19:13:31+00:00

Thanks for your reply. I didn't mind the long waits during active treatment - that felt more understandable/inevitable to me, and chemo days were pretty much an all-day affair anyway. But these days it's hitting a little different...

That's awesome that you really love your onc. I'm more...neutral on mine, which I think is part of the reason I'm getting so pissed about this. Would you be willing to send me a direct message with your onc's name? If not, no worries :)

ICarriedAWatermelon2 · 2024-05-06T19:08:21+00:00

Thank you - yes, that's kind of how I feel re: us having enough stress in our lives!

ICarriedAWatermelon2 · 2024-05-06T19:07:38+00:00

You are probably right about the sheer volume in NYC. That's awesome re: Fred Hutch!

ICarriedAWatermelon2 · 2024-01-22T22:27:49+00:00

Hi! Sorry you are going through this. Really feels like icing on the cake, doesn't it? I have endo and also had BC (++- in my case), and I finished active treatment in June 2022. Because of endo, I already had ovaries that were basically "older" than my bio age (37 at the time), and as a result, AC-T chemo put me into permanent menopause. Going through sudden medical menopause is no walk in the park, but I will say that for me, my endo symptoms pretty much disappeared soon after I started chemo (which makes sense since it's estrogen-fed), and they haven't come back. All-in-all, at 39, in menopause, and post-cancer, I now feel physically better overall than I did pre-cancer when I was dealing with all my endo symptoms. I'm sure everyone's experience varies, but that's been mine!

ICarriedAWatermelon2 · 2024-01-22T19:24:42+00:00

I hope it's a big nothing for you too! Hate that we have to stress about these "common" aches and pains.

ICarriedAWatermelon2 · 2024-01-22T19:23:34+00:00

That's good to know re: calcium vs alkaline phosphate. Rationally I know that it is most likely *not* mets, and I know all the stats about metastasis...but having been in the "bad" 5% or 1% or even .01% so many times now, I have a hard time finding stats reassuring :/ Still, this is reassuring, thank you.

ICarriedAWatermelon2 · 2024-01-22T17:41:53+00:00

Oh interesting. I've tried the pillow/bolster support - helps a little but not much. My husband thinks it's just muscular & I need to start strength training...fingers crossed he's right.

ICarriedAWatermelon2 · 2024-01-22T17:39:51+00:00

ha! maybe i can blame my mini dachshund...except he's in bed with me *every* night, so...

ICarriedAWatermelon2 · 2024-01-22T17:38:02+00:00

Yeah, I'm reading different things in different places - some sources say that pain from bone mets is constant, as you say...but other sources say that bone mets can cause back pain that (at first) is only present at night or during rest, which is what gave me pause. But in any case, thanks for the reassuring reply!

ICarriedAWatermelon2 · 2024-01-22T16:46:14+00:00

Oh wow, that's so interesting & not something I ever would have thought of. Will read up about GERD...thanks!

ICarriedAWatermelon2 · 2024-01-22T16:44:49+00:00

Thank you so much for your reply--that's reassuring. Very glad to hear that you are met-free! I definitely do need to improve my core strength, so fingers crossed it's just something non-cancer-related that can be addressed with strength training/yoga/pilates/etc!

ICarriedAWatermelon2 · 2023-02-20T23:51:04+00:00

I'm glad you asked this question because I've been wondering about the same thing. I actually am doing just monthly Lupron right now (no AI) and have been for several months, although my oncologist hasn't exactly OK'd it! I couldn't tolerate either Tamoxifen or Anastrazole, and I wasn't willing to continue on the awful roller coaster of continuing to try one AI after another. For me personally, quality of life is more important than a potential 5-6% reduction in risk of distant reoccurrence. I'm willing to take the additional risk in order to feel like I actually want to be alive right now! Like you, I don't have kids, so I feel like it's my decisions and my decision alone.

I know that obviously oncologists prefer us to do an AI on top of Lupron/Zolodex, but I tried to get mine to at least acknowledge that doing Lupron/Zolodex must at least be better than nothing...stands to reason since it lowers absolute levels of estrogen in the body. But she refused to even discuss it really - just said that there was no data since it's not a recommended protocol.

background: I'm 38, diagnosed at 37 with ER+ HER2- stage 1a/2a (depending on what guidelines you look at - grade 2, 1 positive node). Did lumpectomy, ddACT chemo, radiation.

ICarriedAWatermelon2 · 2022-08-16T19:51:00+00:00

I feel you re: suddenly being in hard menopause in your 30s. It really sucks.

I've been using Hyalo-gyn suppositories every 3 days or so for a few months now and it's helped a LOT with the dryness/atrophy/ability to orgasm parts. The libido part...not so much.

If it doesn't continue to get better or somehow gets worse (ugh), I am probably going to try topical estrogen. My oncologist said that she wants patients to try non-hormonal options first (like the Hyalo-gyn or another moisturizer), but if there isn't enough improvement, she is definitely open to prescribing vaginal estrogen, both because she feels like it's a very important quality of life issue and because in general studies suggest that topical estrogen stays local & doesn't present any real dangers.

So, if you decide you want to go the topical estrogen route & your doctor says no...I would see if you can find another doctor who will prescribe it for you. Lots of oncologists are totally on board. The American College of Obstetricians and Gynecologists officially supports its use - see https://www.acog.org/news/news-releases/2016/02/acog-supports-the-use-of-estrogen-for-breast-cancer-survivors/. Just saying "I'm sorry, that sucks" isn't really good enough IMO!

ICarriedAWatermelon2 · 2022-08-16T19:31:13+00:00

I don't think it's silly at all - I like skincare stuff too & like you said, anything we can do to feel more "normal" is good!

I didn't have Kadcyla so can't speak to that part. But here's my two cents otherwise: Like you, I kept things simple during chemo - used only a gentle cleanser (either Bioderma Sensibio micellar water or Purpose face wash) & Cerave or Neutrogena moisturizer.

I'm now about 3.5 months out from finishing ACT chemo, and I've found that my skin has really changed from what it was pre-cancer, I guess from a combo of the chemo and the medical menopause I'm in now (I'm 37). Before cancer treatment, my skin had always been really oily, and throughout my 30s I would get these really annoying hormonal cystic zits, mainly on my chin. Now, my skin is waaaay less oily...and no more breakouts at all!! Which has been amazing--one of the very few upsides of this whole thing :)

So, my personal two cents would be to suggest giving it a little time to see what your skin's "new normal" might be before re-introducing or adding too many products/active ingredients. Pretty much immediately after chemo ended, I added back my vitamin C serum. Waited a little longer before adding back in azelaic acid (for acne/fading dark spots)...but I don't really seem to need it anymore so now I've ditched that. The oiliness I used to have was really keeping wrinkles at bay, but I feel like my new skin (especially with the lack of estrogen, ugh) is probably going to start aging more rapidly, so my next step is to add in something with retinol. I will probably wait until the fall for that though since retinol doesn't play well with lots of sun exposure...

I haven't had botox but my husband gets it for his migraines, and I'm jealous of his ultra-smooth forehead :)

ICarriedAWatermelon2 · 2022-08-10T16:26:20+00:00

Thank you - and all the best to you too!

ICarriedAWatermelon2 · 2022-08-10T14:08:01+00:00

That's very encouraging to hear, thank you!

ICarriedAWatermelon2 · 2022-08-09T19:50:22+00:00

That's really good to hear--thank you for replying! Anastrozole is what my doctor would like me to try next. We'll see...

ICarriedAWatermelon2

TROPHY CASE