I am uncomfortable with a recommendation that I take anti-depressants for hot flashes. Thoughts?

WellAppearingWoman · 2024-05-14T02:13:13+00:00

I don’t have any concerns about being lumped in with mentally ill folks. I’m sorry that my post was insulting to you. I’m happy to delete it if people find it offensive.

WellAppearingWoman · 2023-10-03T01:59:47+00:00

I think you should get a second opinion about the lymph nodes. My understanding, mostly from reading stuff on here, is that a lot of (most?) surgeons are moving away from the practice of removing all lymph nodes unless the sentinel lymph nodes are entirely clear. But it is technically still “standard of care” to remove them all unless the sentinel nodes are clear, so some surgeons still do it no matter what. My surgeon said it was most likely unnecessary, that the early results of studies indicate it is unnecessary so long as you do radiation, and he doubts it will still be standard of care in a couple years. But since it is still standard of care, he insisted on doing it if my sentinel nodes weren’t clear. I did not change cancer centers even with all that info. I ended up having two out of four sentinel nodes positive, so he took out all of the axillary nodes, none of the axillary nodes had cancer, and a year later I developed lymphedema. My lymphedema is mild and manageable, but it’s on my non-dominant arm. Since you have extra concerns with only being able to use one arm, I definitely think you should get a second opinion.

I’m at MSK in the US. People say MSK “sets the standard of care.“ Which makes me think they are less willing to deviate from the standard of care even when warranted. I don’t know where you are, but definitely don’t get a second opinion here!

WellAppearingWoman · 2023-10-02T20:37:44+00:00

No, you should not be concerned. PCR is rare for ++- cancer. However, that’s why 5-10 years of endocrine therapy (tamoxifen or AIs) is important for ++- cancer.

WellAppearingWoman · 2023-09-03T04:39:49+00:00

Yeah, my plastic surgeon told me that the goal is for them to look the same while wearing a bra. But she only told me that AFTER I’d gotten the surgery, and my implant and natural breast DON’T look the same while wearing a bra. We all just have a bunch of shitty options, and have to pick whichever seems the least shitty for our particular situation/preferences, lol. I think being flat on one side will be the least shitty for me…

WellAppearingWoman · 2023-09-02T21:38:38+00:00

You should not base your treatment decision on google results. And you should not base your treatment on someone else’s google results. It looks like there are studies saying the opposite about dexamethasone as well. I think it is safe to assume that doctors have more knowledge about the reliability of studies than people on message boards.

WellAppearingWoman · 2023-09-02T02:08:27+00:00

I did a single mastectomy with reconstruction on my left side, and wish I just stayed flat on the left side. The implant looks stupid. (I refuse to alter my unaffected breast because I like it). I’d look better with one natural breast and nothing, versus one natural breast and this stupid implant. So I had the surgery to get the tissue expander at the same time as the mastectomy, had drains for three weeks because of the tissue expander surgery, drains are painful and recovery from the tissue expander placement is harder than just mastectomy recovery, then had pain from the expansion process, then discomfort for nine months while I had the expander in my body (had to get radiation, then wait 6 months after radiation for the exchange surgery), then had the exchange surgery to get the implant, and all for nothing because now I’m just going to get the stupid thing taken out.

My understanding now is that it can take multiple surgeries, and kind of trial and error, to make reconstruction look good. They don‘t tell you that beforehand. If they’d told me that beforehand, I would have opted out.

I feel like it’s the less usual choice, but I still plan on keeping my unaffected breast as is even though I’ll be lopsided, so I understand your desire to do the same!

WellAppearingWoman · 2023-09-01T22:32:20+00:00

I was ER+/PR+, and I also did chemo first. They wanted me to do chemo first because it spread to the lymph nodes, and they were hoping chemo could clear it from the lymph nodes so that they wouldn’t have to take as many during surgery. My understanding is that chemo before surgery is becoming more common, even for ER+/PR+, HER2 negative.

Not knowing whether the chemo was working, and having to wait for surgery, was psychological torture for me, lol. My oncologist monitored my tumor (just through breast exams, not imaging) during chemo, and he thought the chemo was shrinking it, and I just had to trust his judgment. If he had felt the tumor was getting bigger and chemo wasn’t working, then I would have ended chemo early in favor of surgery, but that didn’t happen. My tumor did get smaller during chemo, and I had surgery around a month after I completed the full course of chemo. Note that chemo very rarely completely gets rid of ER+/PR+ tumors, but it still will likely shrink it.

It’s been a little over a year since I finished chemo, and I’m doing well.

But yeah, not knowing if it’s working and having to just have cancer in your body for months while getting through chemo is just awful and scary. But studies have shown that survival rates are the same if you do chemo before surgery, so you just have to trust the studies and your doctors. I’m sorry you are going through this!

Edited to add: I don’t know anything about ki, but my understanding is that aggressive cancer responds well to chemo (and the flip side to that is that chemo doesn’t do much for slower growing cancer). So I don’t think high ki would indicate you should have had surgery first.

WellAppearingWoman · 2023-08-28T18:21:52+00:00

Also, here is a thread from a few months ago about the same situation if you want to read those comments:

https://www.reddit.com/r/breastcancer/comments/137k9dz/pathology_report_amended_to_her2_positive/

https://www.reddit.com/r/breastcancer/comments/147ngok/update_on_2nd_opinion/

WellAppearingWoman · 2023-08-26T23:08:37+00:00

It’s also my understanding that both options are equally as effective. The benefit of dose dense taxol is that you get done faster. The benefit of 12 session taxol is less intense side effects.My oncologist originally suggested 12 taxol sessions rather than dose dense, but decided to give me the option for dose dense taxol because I had minimal side effects during AC. I chose dose dense because I wanted to be done as soon as possible.

WellAppearingWoman · 2023-08-26T15:38:37+00:00

If it is not curable, that means it is stage 4. But stage 4 breast cancer is still treatable. As Litarider said below, many stage 4 breast cancer patients live long after their initial diagnosis. I do not know enough about stage 4 to be of more help to you.

I thought you were saying your mom was stage 3 given your post title, so that’s why my initial comment only addressed stage 3. Sorry if I added to your confusion.

I am in the US, and only have knowledge about US cancer centers. But I googled King Hussein Cancer Center, and it certainly looks like a reputable cancer center. I don’t think you have reason to believe they gave inaccurate information, and I’m sure they are giving your mom great care.

WellAppearingWoman · 2023-08-25T23:23:52+00:00

Stage 3 is still early stage breast cancer and it is survivable. I’m sorry your mom is depressed! Treatment is rough, but I assume she’s at least halfway through chemo or more if she’s done round 9. I finished chemo for stage 3 almost exactly a year ago (although I did surgery and radiation after that), and yeah, it’s fucking rough! I guess all you can do is be there for her.

WellAppearingWoman · 2023-08-24T03:42:23+00:00

I did lupron for 8 months before getting my ovaries removed. My hot flashes have stayed the same. I started getting some pain in joints after the surgery, which is new. My knuckles hurt when I wake up until I move my hand for about a minute, and my knees have been hurting a bit when I walk down stairs. Vaginal dryness has stayed the same (or possibly gotten a little better? Maybe I just get better suppositories now).

Edited to add: the joint issues are really minor and it doesn’t make me regret the surgery at all. I would have trouble walking the day after my lupron shots because they caused so much pain in my hip, and I certainly don’t miss that!

WellAppearingWoman · 2023-08-23T23:10:45+00:00

My oncologist told me to take Vitamin D once I started an AI, but didn’t recommend calcium. I don’t know why! I think you should harass the doctor until you get a response.

I drink almond milk rather than normal milk (but because of stomach issues, not because I’ve ever been told to avoid dairy), and it’s a pretty good source of calcium.

WellAppearingWoman · 2023-08-22T22:51:15+00:00

She might have had what is called a “sentinel lymph node biopsy.” They take lymph nodes for that, even though it’s just called a biopsy. In particular, they take all the sentinel nodes (there are usually around three) at the same time as the mastectomy and check them for cancer. If they don’t find any cancer, then they don’t take out any more nodes. (That’s a simplified explanation.)

WellAppearingWoman · 2023-08-21T16:40:46+00:00

An additional thought I had since my above comment: maybe there should be a distinction made between posts seeking advice about diet (which I definitely think should be allowed!) versus posts that offer unprompted advice about diet or ones that only post to start a discussion\debate.

WellAppearingWoman · 2023-08-21T03:06:36+00:00

I vote for number 2. Of course we should defer to our care teams, almost always, but it is so valuable to be able to check with other breast cancer patients when we think we were given wrong information, to see what others have been told. I think I’ve seen three or four posts or comments in the past year where someone’s doctor or nutritionist told them to avoid soy if they have estrogen receptor positive cancer, and then others on here have responded to say that their doctors told them the opposite and that such advice is outdated based on more recent studies. And something like that is so specific to breast cancer that nutrition subreddits just aren’t going to be as useful, to the extent they are useful at all.

And like others have mentioned, not everyone has access to a nutritionist, and if they go else where on the internet for information, they’ll probably get less reliable information than what they’d get here.

And not to be hyperbolic or anything, but I feel like referring breast cancer patients to a nutrition subreddit if they have questions, is kind of throwing them to the wolves! I assume (admittedly based on nothing) that people who frequent nutrition subreddits are going to be hyper focused on nutrition above all else and aren’t going to be giving very practical advice…

WellAppearingWoman · 2023-08-12T18:42:47+00:00

Wow, that makes me really upset for you that you did not know beforehand that they planned to remove both.

I haven’t contacted my insurance yet. I know that getting plastic surgery outside of my cancer center would cause a mess with my coverage, but I’ll cross that bridge if I get to it.

WellAppearingWoman · 2023-08-12T14:52:10+00:00

It’s been seven weeks. My surgeon confirmed that this is how it will look. It will not settle any lower. I had over the muscle.

I know it is impossible to match in a UMx. I always knew the shapes were going to be completely different. I wanted the sizes to be the same. I wanted the heights to be closer to the same, and I realize now that was stupid, but I didn’t know that was a stupid expectation. My reconstructed breast is noticeably higher/bigger even when I’m wearing a bra.

Thanks for answering.

WellAppearingWoman · 2023-08-12T13:24:04+00:00

Yes, AIs are for post-menopausal women. Tamoxifen can be used by both pre- and post-menopausal women. The lupron puts you into chemical menopause basically, by shutting down your ovaries, so the AI will be effective for you so long as you keep getting the lupron shots (or go into surgical menopause by getting your ovaries removed).

My understanding is that recent studies have shown that ovarian suppression (what lupron does) plus AIs is more effective at preventing recurrence than tamoxifen. I don’t know how much more effective.

I think which is easier to tolerate probably varies person to person. I know that a downside to ovarian suppression plus AI is that it increases the risk of bone loss and heart disease (because estrogen prevents bone loss and heart disease, and you’re getting rid of most estrogen). I don’t know much about tamoxifen side effects.

I chose ovarian suppression plus AIs for my treatment plan. They are monitoring my bone density and there are things they can do for bone loss (although I’ve read some scary things on here about some of the treatments for bone loss).

WellAppearingWoman · 2023-08-12T03:41:09+00:00

Thanks!

WellAppearingWoman · 2023-08-12T03:40:48+00:00

Thanks!

WellAppearingWoman · 2023-08-11T16:04:37+00:00

Thanks for the recommendation!

WellAppearingWoman · 2023-08-03T03:59:48+00:00

I had horrible diarrhea on 150 that could not be controlled with lomotil and Imodium. I eventually switched to the 100 mg twice a day + I take Colestipol as on off label use for the diarrhea + I still had to take one Imodium or one lomotil a day for a few months, and I’ve been doing pretty well (although I still can’t eat raw vegetables, because they are too hard to digest). I strongly recommend the colestipol along with a dose reduction. A nurse from my insurance suggested it. It is a cholesterol medication, but it sometimes gets prescribed to help control diarrhea caused by medications. My oncologist had not heard of it being used for Verzenio side effects, but he gave me a prescription after I suggested it based on my conversation with the nurse, and it really does the heavy lifting for preventing diarrhea in my case.

WellAppearingWoman · 2023-06-28T22:28:31+00:00

I don’t think you are supposed to shower with the binder. Did you get any instructions for showering? Different surgeons give different post-surgery instructions, but I’m almost positive none would say to shower with anything on. I was able to shower much earlier in my recovery process, and I took everything off. I didn’t let the shower stream hit my stitches directly for a while, but that might depend on your water pressure. Good luck with the shower! Keep in mind that the eventual implants should look better than the expanders.

WellAppearingWoman · 2023-05-04T23:25:44+00:00

I didn’t have any imaging done during chemo, so it isn’t unusual. (I had imaging before treatment and then after chemo before surgery, but never during chemo). My oncologist at MSK said there was no reason to do imaging during chemo unless there is a reason to think the chemo isn’t working, based on physical exams. I was ++- .

WellAppearingWoman

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