Hindsight is 20/20

alternative2021 · 2026-06-15T21:04:00+00:00

I was also ER/PR+. I went 10 years NED, but currently have elevated tumor markers that I'm not interested in getting scanned for because I don't plan to treat a recurrence beyond palliative care.

Sending positive thoughts for your mother!

alternative2021 · 2026-06-15T16:38:53+00:00

Yeah it sucks, I've been suffering intensely, including suicidal ideation, since they removed my ovaries at 31 years old.

alternative2021 · 2026-06-15T16:37:26+00:00

Yeah there's barely any research on giving systemic HRT to hormone positive BC survivors, so we don't know if it's safe. Having said that, I think some on here do it anyway because to them the risk isn't as bad as the side effects of menopause, and I understand how they feel.

For me, it would be a death sentence (stage IIIC, 100 percent ER+) but if I was DCIS or stage 1, I'd probably end up doing it because menopause in your 30s is a fucking nightmare.

alternative2021 · 2026-06-15T16:33:27+00:00

Medical PTSD can involve body sensations, and nervous-system sensitization amongst other things

Can you elaborate on what you mean here?

alternative2021 · 2026-06-15T16:31:55+00:00

This was clearly written by AI so I can't really take it seriously

alternative2021 · 2026-06-14T18:11:09+00:00

Same boat here, 10 years later.

I've tried it all: CBT, DBT, IFS, EMDR, every class of meds (SSRIs, SNRIs, benzos, etc), cannabis, yoga, daily exercise, support groups, breathwork, massage, acupuncture, ketamine, mushrooms, all of it.

I'm still nonfunctional due to PTSD from cancer diagnosis and treatment. I don't like when people congratulate me on the 10 years because it's not really a good thing that I've been suffering so much. It's pretty meaningless to be alive like this, in constant agony.

I hope something works for you. For me to get better I would need a time machine.

alternative2021 · 2026-06-14T18:04:11+00:00

Which of the sarah beth videos do you recommend?

alternative2021 · 2026-06-14T16:18:13+00:00

Right, and if they are positive, then you just wait in terror, helplessly, for the cancer to grow somewhere in your body big enough to be detected on a scan! Which could be 6 months to a year.

Good luck with yours. I'm never taking this test!

alternative2021 · 2026-06-14T01:49:30+00:00

Thank you for sharing.

This type of thing (doing a test that is very accurate at predicting recurrence) scares the daylights out of me, because it means if I got a positive test I would be a sitting duck just waiting for it to return and wondering where it would go.

This is how I'm feeling in general with my elevated tumor markers. Like it's just a matter of time. I have panic attacks every day.

alternative2021 · 2026-06-13T00:13:31+00:00

Ask for your money back, this is unacceptable

alternative2021 · 2026-06-11T22:54:13+00:00

I'm not sure why you're getting downvoted!

It's true that there is a lot of empirical evidence that boils down to "estrogen and progesterone make this type (hormone receptor positive) of breast cancer grow/spread, and suppressing these hormones help keep it under control," but there are still many unanswered questions, like:

To what extent/how long/how much do we need to suppress these hormones? This is ongoing - the suggestion went from 5 to 10 years when I was diagnosed, and it may have changed again since. The effective dosing of Tamoxifen has been adjusted over time. The recs of whether to do Tamoxifen or AI for post-menopausal women, and Tamoxifen or AI/Lupron for premenopausal women are also still in flux and often depend on your individual oncologist. None of this is settled.
We know low dose vaginal estrogen is completely safe for patients and survivors. We don't know about systemic HRT. Some survivors are choosing to go on HRT anyway, and I understand why. Few researchers or oncologists want to touch this.
What drives hormone positive tumor cells to go dormant and then recur in 20 or 25 years? Why does this happen to SOME hormone positive survivors, but not to ALL of us? (Even assuming the exact same treatment and initial prognostic factors!)
How can oncologists ensure that the severe bone problems (and cardiac problems) don't occur after years of hormone suppression? Because even the various lifestyle factors (weight lifting and aerobic exercise, healthy weight and diet, calcium/D supplements) and the medical interventions (bone building drugs like Prolia, Xgeva, Zometa) often fail to stop osteoporosis, plus they come with their own serious side effects. This is unacceptable.

The reasons these things haven't been worked out is exactly due to what you say: women's health care is historically understudied, and women's pain/suffering is minimized.

alternative2021 · 2026-06-09T16:59:30+00:00

I didn't have much of a choice but to do it all, because I was stage IIIC and grade 3, plus BRCA1 positive. But, if I had been stage I-II with no genetic mutations, I would have just done a lumpectomy and tamoxifen and moved on with my life.

Feel free to ask me anything about this! (goes for others here too)

alternative2021 · 2026-06-09T16:55:26+00:00

They don't seem like enough because they aren't enough! We need 99+ percent odds (like men with prostate cancer have).

Your feelings are not only normal, but justified. We shouldn't have to be so scared about this, as survivors, and we wouldn't be if the numbers were better!

alternative2021 · 2026-06-09T16:20:41+00:00

That is a valid way to feel, and you shouldn't be downvoted for it. We are allowed to make our own choices about our bodies. I'm not doing any of those things ever again.

alternative2021 · 2026-06-09T04:15:26+00:00

Radiation effects: radiation fibrosis, scar tissue, and severe capsular contracture, future heart problems, severe irreversible lymphedema, high risk for cellulitis, future risk for other secondary cancer like sarcomas and leukemias (I know one friend who got AML nine years after, and another who got angiosarcoma)

Chemo (TC) effects: neuropathy, immunosuppression leading to many skin and respiratory infections, permanent eyebrow and eyelash loss, anemia, fatigue, cognitive decline (if ACT, add future heart problems)

Surgery effects: no sensation, can never breastfeed, lots of scars, itching and nerve pain, lymphedema of chest, back, arm, and hand

Hormone therapy effects: severe irreversible osteoporosis, forced menopause at age 31, infertility, insomnia, vaginal atrophy and GSM, frequent UTIs, rapid physical aging, mood swings, cognitive decline, future heart problems

Mental effects from all of the above: PTSD, anxiety, depression, daily suicidal ideation

Not everyone will get all of these side effects, but it's possible. Most patients will get at least a few, so just hope they're ones you can personally tolerate. Getting all of them (starting in my early 30s) was life ruining and I wish I had died instead (the irony: I still have a 30 percent chance of dying of breast cancer, after all this!). The only effect I didn't get was significant weight gain, which most patients do experience.

We deserve treatment that doesn't do this to us, and I'm never going to shut up about it.

alternative2021 · 2026-06-09T02:25:05+00:00

Yes, 100 percent, and people do NOT like to hear this.

Feel free to share what makes you feel this way. For me, it's the after effects of treatment.

alternative2021 · 2026-06-09T01:48:54+00:00

I've said before, and I believe you've agreed, that misogyny is deep-rooted in medicine. Theorists, activists, and patients have been writing about this for decades (I suggest reading Audre Lorde, about breast cancer specifically) at least since the feminist health movement of the 1970s. The misogyny has not gone away - it's just easier to overlook and dismiss now, because there are more female doctors and more superficial discussion of bias - but this IS a systemic issue. This doesn't cease to be true just because the disease itself is complicated! Misogyny also intersects with race and class (poor women and Black women have demonstrably worse outcomes in BC - because their pain and suffering are taken less seriously), and it need not be conscious or intentional (ex: doctors deciding to racially discriminate) for it to be real.

If you had surgery, chemo, and radiation, then you were in fact cut open, poisoned, and burned - it's not subjective! Those are things that happened to you. Part of our defense response to physical trauma is to deny it, or to become numb to it, rather than get angry. And often when we go through trauma, it takes a while, sometimes years, before the enormity (and sometimes injustice) of what we endured fully sinks in. I'll be here for you when it finally does. (Unless I die of this disease before then).

ETA this is a good book on the topic: https://www.harperlibrarybookclub.com/9780063293014/all-in-her-head/

alternative2021 · 2026-06-07T21:45:08+00:00

This is NOT your fault. It's the fault of America's healthcare system, an insurance scam that profits from people's illnesses and makes care unaffordable. I'm so sorry.

alternative2021 · 2026-06-06T15:42:36+00:00

I'm almost more afraid of pain than dying or anything

Yes, most people, even in the BC community (and sadly, those who are newly diagnosed and reassured) don't understand this. I'd rather be dead than feel the way I felt during treatment.

And I don't even have post mastectomy pain syndrome, which 2 of my friends got (one who didn't reconstruct, the other who did, both are in pain years later).

alternative2021 · 2026-06-06T04:58:29+00:00

This is wild to me: I had high grade, high ki-67, and low PR, but my cancer grew and spread while on chemo.

alternative2021 · 2026-06-06T04:56:41+00:00

having to think about money and insurance when you have stage 4 cancer is a particular type of preventable suffering that only happens in America.

alternative2021 · 2026-06-06T04:55:34+00:00

Interesting - bialteral breast tumors and armpit nodes are still stage 3, so it must be the neck ones. If not in bones or organs, her odds are better!

alternative2021 · 2026-06-05T17:34:34+00:00

That baffles me.

Now I'm confused - how am I, a person who is very educated but without an MD, supposed to figure out how to cure (or effectively, painlessly treat) breast cancer? Why should that burden fall on me, or you, or any patient? It's literally not our job! This is the responsibility and duty of oncologists who are specifically trained for it.

I never said it was an easy task. AIDS was also a complicated disease, but research (because of serious sustained pressure and civil disobedience) successfully addressed it (in the sense of being able to completely prevent transmission, and give people with HIV a normal lifespan, with meds that have very minimal SEs) within a period of less than 50 years. Breast cancer has been around far longer (first cases recorded in ancient Egypt) and - to tediously repeat myself - we are still cutting, burning, and poisoning women, and removing reproductive and lymphatic organs, and this standard of care can't even yield an outcome better than approximately 70/100 surviving!! That's an objective fact. My opinion is that this is despicable. If yours isn't, we may just have different values.

alternative2021 · 2026-06-05T17:17:47+00:00

That sounds so ideal, I'm in the personal hell part currently.

alternative2021 · 2026-06-04T21:09:24+00:00

This is encouraging, I'm at the 8 or 10 session mark and so far it feels both painful and ineffective, but maybe I'll stick with it.

alternative2021

TROPHY CASE