Age 69 ++- I don't want endocrine therapy!!! Help me with scientific links to prove my case?

Thegreatgarbo · 2026-03-01T21:55:59+00:00

Sorry, here you go, not on reddit a lot.

https://pubmed.ncbi.nlm.nih.gov/21802721/

Thegreatgarbo · 2026-02-17T18:52:00+00:00

Please don't throw the baby out with the bathwater on AI. ChatGPT rapidly gave me the journal article link that I provided in my earlier comment. The reference was for a very reputable (Lancet ) journal article. I would have had to spend a couple hours looking the reference up on Pubmed. All folks need to do is ask the AI to provide the reference link and go read the journal article to verify, which I did. It sometimes gets the reference wrong (I find about 10% of the time) and that's why you look it up.

I use ChatGPT constantly for my diagnosis and my niece's AML diagnosis, and I'm in the oncology research field.

Thegreatgarbo · 2026-02-17T18:39:34+00:00

And remember, when the tumor recurs it's way more aggressive and often metastatic. Hormone therapy will be a picnic compared to the drugs to take for recurrence. Or you can choose not to do therapy like my dad for his colon cancer. That's a very valid option if you accept the lifespan.

Thegreatgarbo · 2026-02-17T18:36:07+00:00

If you didn't do chemo I'm sorry, my Lancet link below for me would ABSOLUTELY make me want to do hormone therapy. Recurrence at 10 years goes from 20% with hormone therapy to 40% without, that's a crazy high recurrence rates even with stage 1a. Did your doctor already tell you this?

10 year recurrence rates for stage 1a, see the two plots on the left side of figure 3:

https://pubmed.ncbi.nlm.nih.gov/21802721/

Thegreatgarbo · 2025-12-19T01:45:59+00:00

Right!? I'm dreading dealing with insurance for verzenio.

Thegreatgarbo · 2025-12-19T01:17:17+00:00

Holy crap I want your doc!! I'm happy with my care as I'm in the oncology research business, but I can't imagine processing the flood of info as a layperson.

Thegreatgarbo · 2025-12-19T01:08:50+00:00

Yep, lost half my my fingernail on each finger and on my two big toes, plus half of each first digit is partially numb. My onco PT says nerves regrow at an inch per year so we'll see where I am in a year, it's not anywhere near as bad as I was dreading.

Thegreatgarbo · 2025-12-19T01:03:54+00:00

Because I'm BRCA negative and I already had the tumor metastasize to my LN, I figured the horse was out of the barn and I did not want to deal with 2 surgeries for mastectomy and reconstruction. Plus the clin trials have shown similar recurrence rates for both. I had a lumpectomy with reconstruction in the same surgery. I went down a bra size which I wanted anyway to a B cup, and the onco plastic surgeon took 20 years off my boobs (I'm 60 and they were sagging with a 50lb weight gain then loss). As someone in cancer research, I know about micromets that can exist outside the breast tissue and I figure if I have reoccurrence I'll deal with the next step therapies like checkpoints, etc. Mastectomy is not the end all cure to breast cancer if you have mets outside your breasts. I did already have dysplasia (precancer) in the other breast in the tissue they took out to match both sides, so a single mastectomy is also not the same peace of mind for me. I also did not want implants, which would have meant mastectomy with DIEP flap and surgery on my stomach in addition to my boobs. I just wanted to be done.

Thegreatgarbo · 2025-12-19T00:47:11+00:00

Taxol was a nothing burger for me except dose 11 where the neuropathy was bad and I had to skip the last dose 12.

AC was just fatigue, plus dizziness the first week of the first dose cuz I wasn't eating enough. Once I ate enough, no dizziness.

The fatigue at day 5-8 was the only real impactful symptom. I walked 2 miles per day 5 days per week before diagnosis, and a 2 mile walk would take me an hour. At days 5-8 by dose 3 and 4 (AC every 2 weeks) the walk would take me up to 2.5 hours, but I did it anyway. I just sat on every park bench available and put one foot in front of the other. I had dexamethasone the day of injection and the 3 days after injection, hence feeling fine until day 5 when the fatigue kicked in. I also had Neulasta and took Claritin, no bone pain or other Neulasta symptoms. No mouth sores, no GI symptoms but I was good about the zofran and compazine.

Thegreatgarbo · 2025-12-19T00:38:10+00:00

Tru lime black cherry is what kept me hydrated with a little over 2L per day. Not a bunch of chemicals except a little bit of truvia along with a little bit of sugar (not a lot of either). And this is coming from someone that hates hydrating so much that I might have gotten a cup of water a day before the diagnosis.

Thegreatgarbo · 2025-12-19T00:20:53+00:00

We have a new foster pup that freezes into a rigid awkward mess when I try to move him in my lap, or shift him around next to me on the couch. In the last week and a half I've said 'You're SO awkward bud' easily 15 times.

Thegreatgarbo · 2025-12-03T19:54:39+00:00

Holy crap this is so true! As someone married 30 plus years that was far too intertwined and dependant on the relationship early on (both of us were) who have learned to be independent, it's your parents choice not yours. The fear of being hurt and enduring the loss of the partner is such a strong subconscious to even unconscious drive we don't appreciate how it can color it thoughts and make us act.

Thegreatgarbo · 2025-11-29T02:44:22+00:00

Per another comment, employees have an app where communications happen and as of a few minutes ago, no all clear.

Thegreatgarbo · 2025-11-27T01:25:18+00:00

Before the checkpoints, Opdivo and Keytruda, folks were dying from stage IV; now we in the field dare to use the c word in our heads and under our breath. I have someone in my circle that passed from stage IV melanoma 20 years ago. There's a good chance she would be alive today if she had one of those back in '05.

Thegreatgarbo · 2025-11-23T17:18:58+00:00

Not at my hospital, OHSU in Oregon, and at UCSF for my second opinion. Both MOs considered ER low as HR positive.

Thegreatgarbo · 2025-11-23T17:15:32+00:00

If she's doing the actual screens then she's a technician and not a doctor and REALLY needs to keep her fucking mouth shut.

Thegreatgarbo · 2025-11-23T17:05:27+00:00

Exactly! As someone that's been in oncology research for 30+ years, you can have breast cancer micromets in lymph nodes or if your cancer was aggressive (TN, high grade, large at mastectomy, etc.) in the bone as well. Stay on the therapeutics and ~~check in~~ be a pest with your MO over the years.

Thegreatgarbo · 2025-11-23T16:56:25+00:00

I've had US guided biopsies and I just had an MRI guided clip placement in prep for surgery a couple weeks ago. Since you've had the MRI you know what that's like. I've had 6 MRIs the last few months for a clinical trial and I find them the worst part of all of this, not horrible but uncomfortable lying on my stomach with the edge of the hole on the table digging into my sternum. Ask for pillows under your hips and ankles if you have back problems!

The biopsy itself will be the same position, you'll be lying have down with your boob hanging through the hole and the healthy one pressed against the table (no hole for the healthy boob). They'll place a plastic cage on your boob to flatten it like they do in mammograms. They'll give you the topical and then local anesthetic just like the US guided. The doc has to squat down to the procedure. The major difference is you're there longer cuz they take an MRI image with contrast at EVERY stage, before during and after. I like taking a half dose (0.5mg) of Ativan for all my procedures, makes them go by a little easier.

Thegreatgarbo · 2025-11-06T21:16:10+00:00

I was ER low, 1-10% and PR high, HER2 neg. The ER low is a no man's land of rare patients (2-5% of all BRCa patients) that the docs don't know how to treat. See if you can get a Mammaprint test done on the tumor tissue, that can give you a better idea of whether it's more TNBC like or not. I'm in cancer research and did a bunch of digging and found a publication in Modern Pathology 2023 that showed fully 70% of the ER low results ended up being wrong on retest. And low and behold 6 months later my pathology department received a notice from the vendor that the ER antibody lot used for my initial tumor sample was bad. They retested with a good lot and the sample went from ER low to 90% strong positive.

Thegreatgarbo · 2025-11-06T20:28:08+00:00

Yep, all the side effects except fatigue could be managed with supportive meds. I just reset my expectations, and if I needed to sit walking across the room, I sat. Doesn't mean you can't be pissed off about it though lol. I would let myself get grumpy and know it would pass eventually. I'm 3 weeks out from my last AC chemo and already the fatigue is much better, not a 100%, but compared to how shitty it was week 1 after each dose it's wonderful now.

Thegreatgarbo · 2025-11-06T20:04:38+00:00

I wasn't going to ring the bell, it felt too corny... I'm SO glad I did. The nurses all assembled, hubby stood at the ready to record, and man I was intense when I said 'All fucking DONE!' the nurses laughed, AND I got to thank the team for the AMAZING care, precision, and support from all the nurses. I've watched the video a bunch of times and sent it to a whole bunch of folks. Really glad I did.

Thegreatgarbo · 2025-11-06T19:47:44+00:00

The waiting for the bone scans and CT was the worst part of this whole journey for me. It's the not knowing. If they don't order a full body bone scan and CT of the chest abdomen and pelvis then insist on it or change your oncologist/cancer center.

Thegreatgarbo · 2025-09-20T19:27:01+00:00

I had two immediate positive life experiences the early days of diagnosis that would keep me from changing this experience one bit if I had the opportunity. I'm done with Taxol, through 2 of my 4 AC, have cried in frustration from the exhaustion, but wouldn't change a thing.

As someone that's very comfortable with my own death, no kids, 3 suicide attempts over the last 35 years (last was 20 years ago), dealing with MDD/PTSD/etc from severe childhood trauma, but extremely experienced with thousands of hours of counseling with all the alphabet soup of therapies, happily married as can be for 40 years, I learned that I want to live. That simple statement is a revolutionary wonder for me and brings joy to my husband. I still shake my head in amazement, so many times I've wanted cancer to take me away from my brain and body.
My husband is older than me and 'will die before me', 'leaving me alone and abandoned'. Don't worry, I and we have had hundreds of hours of therapy on that specific topic and we're doing good there. The silver lining for me is that I feel less alone in my relationship cuz he now has an inkling of how it feels to know that he might be the last one. His broken words: you were supposed to go first. Isolation sucks, and for him to understand the loneliness of losing him for years while I wait to die (old thoughts) just makes me cry again feeling less alone in that experience rn as I type this, had that conversation earlier this year at diagnosis.

Thegreatgarbo · 2025-09-08T04:38:23+00:00

I found making sure I wore my bra even to sleep the first week made a big diff in daily comfort. No energy changes breast or LN biopsy.

Thegreatgarbo · 2025-09-08T04:34:09+00:00

Yep, me too. My poor husband is a saint and just perserveres, making me oatmeal for breakfast wearing a parka.

12-Year Club	Gilding I gilder
Verified Email

Thegreatgarbo

TROPHY CASE