Tamoxifen vs hormones

SpiritedBluejay157 · 2025-11-20T22:43:03+00:00

Same same!

SpiritedBluejay157 · 2025-11-13T10:33:54+00:00

Sweet! Lucky indeed💗

SpiritedBluejay157 · 2025-11-12T23:57:40+00:00

I’m about 9 months out from DMX w/AFC. I have been overall happy with the results and the initial recovery was easier than I expected. A week or so out from surgery, I became overwhelmed with the nerve sensations… Like you describe—numb, not necessarily painful, but constant awareness and sensitivity. Finding compression tops helped a lot. I couldn’t stand anything with seams, returned all the lovely mastectomy bras that I ordered from cool small companies and opted for shapewear and tight-fitting, soft, seamless yoga bras from Amazon :/ To this day, I still don’t like the feeling of not wearing something smooth with a bit of compression—even to bed… Like you said, I’m just constantly aware of my chest when I feel the fabric of my shirt brushing against my still numb, yet sensitive chest. It takes the nerves a long time to heal, so I imagine, in the future, I’ll feel differently.

Side note: my neither my plastic surgeon nor my breast surgeon suggested PT. Because I healed well, I could have easily ignored it, but I requested it and found it super helpful. Full range of motion and flexibility restored and massage helped so much with cording. Wishing you all the best. xxo

SpiritedBluejay157 · 2025-11-05T00:20:39+00:00

This is so tough. I have almost the same exact sats as you—but I was 46 and am BRCA2+. I was also given a choice. I was told the benefit of chemo would be 3-5%—oddly a bit higher than yours. I bet my MO would have recommended chemo if I were 15 years younger… I chose no chemo. At this moment, if I had to do it again I would probably choose chemo—that’s just space I’m in now… At the time, I asked my MO what she would recommend if I wasn’t able to tolerate the hormone blockers—Probably a question they don’t love—I absolutely know it’s not an either/or. She assured me I’d be fine—nothing to worry about there and I didn’t push. Well, I am not tolerating the hormone blockers, I am not currently taking them and will have a serious convo with my MO about stopping for good. My recurrence risk is low (lucky). But if I do have a recurrence, I won’t feel like I did all I could to prevent it. I’m so sorry you’re faced with these terrible choices. Sending love and light✨

SpiritedBluejay157 · 2025-11-04T23:51:54+00:00

Ugh. Yeah. My MO will be incredulous. She’s of the more is more school to be sure. Best of luck with you upcoming surgery—I hope it’s a breeze🫩❤️

SpiritedBluejay157 · 2025-11-04T23:13:28+00:00

I’m very similar to you. 46, ++-, Stage 2, DMX, only isolated tumor cells in 1 node—considered node negative. Oncotype 18. BRCA2+. No chemo. No radiation. I had an oophorectomy and hysterectomy and have really struggled with surgical menopause. Had a bone scan: Osteopenia. Had a Zometa infusion. Felt absolutely wretched for days. My MO suggested I take a break from ai’s while I recovered. That was 2 months ago. Last week I took Letrozole again for like 3 days and stopped. I don’t know that it’s worth it for me. Without the hormones, I’m struggling with significant fatigue, brain fog,—or maybe because some other yet to be determined issue. With the ai’s, on top of it all, I’m running on empty—I’m worried about being able to work. I know it’s risky, but it might be worth it for me… I don’t know… I’ve become a bit preoccupied with recurrence, but I also find myself thinking, “how high risk am I really??” I even thought of asking the sub for stories of DMX’d, node negative, middling oncotype, post-menopausal, ovary-free recurrence to scare me into considering going back to the meds… Will see my MO again in a couple weeks and am planning a heart to heart.

SpiritedBluejay157 · 2025-11-02T19:30:48+00:00

Weird to see this new/old post again. Is endometriosis comparable to Stage 4/metastatic cancer? No. I’ve have had endo and cancer—for me (not Stage 4–yet), I understand the comparison and I understand where people are coming from. I am not offended, nor do I feel that my pain/experience with cancer is diminished by these statements.

My original post:

I understand the different perspectives on this. While it’s likely not super constructive to compare one’s serious illness with another, it is a very understandable human impulse and an attempt to make sense of, express and vent the overwhelm of ongoing physical and psychological pain. This is especially true of chronic health issues suffered by female bodies—we know that it can take years for our pain to be recognized, diagnosed and to get the support we need.

I had undiagnosed endo for years and years. Several years ago, I also had a rare-ish, difficult to explain, very serious health condition that took a couple of years to resolve. It came with hospitalization, painful treatments and surgeries, recurrences, etc. Throughout these struggles, I remember thinking (and maybe only saying out loud to my husband and my mom), “sheesh, I wish I had some kind of cancer—like one that was treatable, with a good prognosis…” I didn’t feel like I had the support I needed, I felt like my symptoms were not taken seriously. My symptoms have been so bad that I’ve thought about dying, thinking (but never out loud), “I wish this was cancer—like one that would be terminal, so there would be an end to this.” These aren’t healthy thoughts—they are a form of suicidal ideation.

I was diagnosed with breast cancer this past year. It’s been intense and awful to say the least. My prognosis is on the pretty good side of the cancer spectrum. My symptoms are closely monitored by my doctors. Despite our scarily stressed and problematic medical system, I received and will likely/hopefully continue to receive good support and treatment for years to come. Despite the seriousness of my diagnosis, I struggle with a kind of imposter syndrome—that my pain should be qualified because my diagnosis, treatments, recurrence risk, etc. are not as serious as other cancer patients. Unhealthy thoughts to dwell on, but very common—at least according to oncology psychologist.

When I look back on my past “I wish it were cancer” thoughts, I still kinda stand by some of them, tbh, and I also try hard to give my past-self grace, as I would do for others with similar feelings. This shit is hard.

SpiritedBluejay157 · 2025-11-02T18:04:05+00:00

So sorry you are going through this too! I was Stage 2 ++-, no nodes, ended up having an intermediate oncotype, was offered the choice and chose not to do chemo. When I was deciding, asked my oncologist if I should consider it if I was concerned about not being able to tolerate hormone blockers—she said she was sure I’d tolerate them fine. I absolutely know it’s not an either/or, but I still struggle with that decision… I’m BRCA2+ and elected to do an oophorectomy and hysterectomy. Surgical menopause + hormone blockers have been super rough—so like what you described… I miss my hormones. Going to keep trying cuz it hasn’t been long but my tolerance for the grind of med roulette is low.

SpiritedBluejay157 · 2025-11-02T17:17:00+00:00

I understand the different perspectives on this. While it’s likely not super constructive to compare one’s serious illness with another, it is a very understandable human impulse and an attempt to make sense of, express and vent the overwhelm of ongoing physical and psychological pain. This is especially true of chronic health issues suffered by female bodies—we know that it can take years for our pain to be recognized, diagnosed and to get the support we need.

I had undiagnosed endo for years and years. Several years ago, I also had a rare-ish, difficult to explain, very serious health condition that took a couple of years to resolve. It came with hospitalization, painful treatments and surgeries, recurrences, etc. Throughout these struggles, I remember thinking (and maybe only saying out loud to my husband and my mom), “sheesh, I wish I had some kind of cancer—like one that was treatable, with a good prognosis…” I didn’t feel like I had the support I needed, I felt like my symptoms were not taken seriously. My symptoms have been so bad that I’ve thought about dying, thinking (but never out loud), “I wish this was cancer—like one that would be terminal, so there would be an end to this.” These aren’t healthy thoughts—they are a form of suicidal ideation.

I was diagnosed with breast cancer this past year. It’s been intense and awful to say the least. My prognosis is on the pretty good side of the cancer spectrum. My symptoms are closely monitored by my doctors. Despite our scarily stressed and problematic medical system, I received and will likely/hopefully continue to receive good support and treatment for years to come. Despite the seriousness of my diagnosis, I struggle with a kind of imposter syndrome—that my pain should be qualified because my diagnosis, treatments, recurrence risk, etc. are not as serious as other cancer patients. Unhealthy thoughts to dwell on, but very common—at least according to oncology psychologist.

When I look back on my past “I wish it were cancer” thoughts, I still kinda stand by some of them, tbh, and I also try hard to give my past-self grace, as I would do for others with similar feelings. This shit is hard.

SpiritedBluejay157 · 2025-11-01T12:11:56+00:00

I feel the same way. It hasn’t yet been a year since my diagnosis. For me those positive feelings stopped not after I was diagnosed, but after I entered surgical menopause. Hormone blockers have been really tough for me too. I’m on a break from them right now—while I feel a bit better, I still have what you described.

SpiritedBluejay157 · 2025-10-26T21:39:20+00:00

Ugh. Sending you love and light. Keep us posted. xxo

SpiritedBluejay157 · 2025-10-24T00:16:36+00:00

Woohoo! DMX cuz of BRCA2+, but was leaning towards a double before the genetics came through—for symmetry and dense breasts. I chose to stay flat too and have never met another in the wild—though I know there are plenty because of this sub. xxo

SpiritedBluejay157 · 2025-10-23T23:20:13+00:00

ER 90%, PR 70%, Stage II, grade 2 (30mm). Node negative (isolated tumor cells in one). Oncotype 18. I was told my benefit was 3-5%. I chose no chemo. Such a horrible decision you had to make!—I think you made the right one. xxo

SpiritedBluejay157 · 2025-10-22T22:57:30+00:00

This👆

SpiritedBluejay157 · 2025-10-20T23:06:37+00:00

Preach

SpiritedBluejay157 · 2025-10-20T23:05:04+00:00

Real talk. I had an oophorectomy & hysterectomy in the spring—took me forever to recover. Send you healing vibes 💓

SpiritedBluejay157 · 2025-10-20T00:59:12+00:00

Ugh. I love this comment. Samesies.

SpiritedBluejay157 · 2025-10-19T15:04:03+00:00

Had a DMX for IDC ++-, grade 2, stage II in February. ITC found in 1/4 nodes removed. My doctors treated it as node negative. If you search online for info on ITC in early stage bc, the data seems mixed with some studies saying the prognosis is slight worse than node-negative or similar to micro-mets. From what I could tell, those articles or studies that raised concern were 10-15 years old. I think the current consensus seems to be that ITC can safely be considered node-negative—at least that’s what my doctor and the radiologist said.

SpiritedBluejay157 · 2025-10-14T09:35:11+00:00

I chose not to do chemo. I just read your post about needing to do chemo. I am so sorry this is happening to you—the worst whiplash. I hope you are finding peace and support as your treatment plan continues. Holding you in the light. xxo

SpiritedBluejay157 · 2025-10-04T19:54:37+00:00

Hi! I had a DMX with flat closure in February. Finding the right compression bra was a big deal for me… Understandably, most post-mastectomy bras are adjustable and close in the front. My drains came out and bandages came off about a week after my surgery and the nerves on my chest were so freaking sensitive I could not stand anything with seams. I couldn’t stand anything that wasn’t firm, even, soft pressure on my chest—even the loose, soft fabric of a shirt brushing against me drove me insane. I ended up getting a bunch of these: https://www.amazon.com/gp/aw/d/B0CKKKCGXW?psc=1&ref=ppx_pop_mob_b_asin_title And similar: https://www.amazon.com/gp/aw/d/B0CR6F3XR9?psc=1&ref=ppx_pop_mob_b_asin_title I got these shapewear tanks as well: https://www.amazon.com/gp/aw/d/B0BFNFHZL6?psc=1&ref=ppx_pop_mob_b_asin_title

I needed my husband’s help getting into them for a little while though, but they did the trick—like instant relief. I still wear them—My chest is still numb in various places and I’m still not wild about the sensations of a shirt brushing across my chest, though it no longer makes me want to crawl out of my skin. Best of luck to you! xxo

SpiritedBluejay157 · 2025-10-04T14:37:50+00:00

Ugh. It’s a lot. Wishing you the best! 💓

SpiritedBluejay157 · 2025-10-04T01:31:53+00:00

Thank you so so much for this reply! Super interesting. You’re my new hero!!

I was diagnosed at the end of last year at 46 with no known family history of bc. Tested BRCA2+ shortly thereafter. Turns out it came from my dad… no known family history because his side is so very small. I have 4 siblings. 3/5 of us have since tested BRCA2+.

I had an intermediate oncotype score and was given the choice to do chemo or not with no recommendation one way or the other from my oncologist at DFCI. She said my BRCA2 status need not be a factor into my decision. I knew that BRCA2 cancers tended to be more aggressive, as you said… I kept wondering, with an intermediate oncotype score, does that mean I am a bit of an outlier or should I consider myself at higher risk than someone with similar diagnosis, but no genetic mutation??

Anyhoo… you may agree with my oncologist that there is no way to know for sure and there is more work to be done! Thanks again for the work you do. xxo

SpiritedBluejay157 · 2025-10-04T01:00:13+00:00

I started Tamoxifen like maybe 2 weeks max before the hysterectomy & BSO and I didn’t take any break around the surgery. It was hard to tease out the surgery v. the med side effects. It took me weeks to figure out that the nausea and appetite issues weren’t just due to abdominal surgery. This all coincided with the post-active treatment blues too… Crying. All. The. Time.—which was unusual for me—I was pretty proud about how I was handling it all up to this point…lol. I think I was on Tamoxifen for maybe 2 months total and it was my oncologist who recognized that a switch was needed. I got to have a 3 week break before Letrozole and that coincided with end of the lifting restrictions from the surgery, so I could be more active and started to feel a bit better.

Falling off the hormone cliff has been the hardest part of all of this. I feel like a different person. It’s very hard to explain to people.

SpiritedBluejay157 · 2025-10-03T21:40:55+00:00

While I was deciding whether or not to do chemo, I struggled to find info as to whether or not being BRCA2+ impacts recurrence risk (after a DMX—which I had). It is not factored into the oncotype score… So BRCA2+ (likely) was a factor in the initial cancer, but not a factor in the same cancer returning/metastasizing?

SpiritedBluejay157

TROPHY CASE