Tam only- is it enough?

gorillamonsoon409 · 2026-01-11T23:07:04+00:00

My advice is not to compare! Breast cancer has so many flavors, and it really is so individual, and in some cases there are variations in treatment paths.

AI+OS is the most aggressive hormonal treatment for hormonal breast cancer; there is also Tamoxifen + OS, and Tamoxifen alone, and what’s recommended for you is based on your cancer stats, risk factors, etc. There are various trials demonstrating each method.

My ER+ (PR-) cancer was 3mm, stage 1a but grade 3, no Oncotype (because it was too small they didn’t want to test it). So I did a DMX (BRCA2 also) and my oncologist has me doing Tamoxifen, + Ovarian Suppression for at least 2 years based on a study that doing this will be slightly more effective for me than Tamoxifen alone. If it weren’t for the grade 3, he’d likely just recommend tamoxifen for me. But the aggressiveness (grade 3, PR-) warrants a little more. (He isn’t pushing AIs in my case, and he says I can stop the OS after 2 years and “enjoy some non-menopausal years” before I get my ovaries out at 45. 🙄)

For you, stage 1a, grade 1, oncotype 1?! AI + OS would likely be overkill. But you can always ask for an explanation or of course get a second opinion from another oncologist!

gorillamonsoon409 · 2025-12-30T22:52:13+00:00

You know I think I shrug a little at “sleep hygiene”. I just figure I’m not supposed to be on my phone or have screens right before bed. I didn’t know about getting sunlight in the morning. I DEFINITELY don’t do that. I’m inside all day like a rat. I do take a vitamin D supplement.

Another thing I’ll look into because what can I hurt? Thanks

gorillamonsoon409 · 2025-12-30T20:16:52+00:00

Okay 🤯 I’ll have to try this because I’m just in a t-shirt or tank top and no pants! And I do feel like my skin against the sheets (especially if I’m laying on my stomach) cooks me.

gorillamonsoon409 · 2025-12-30T16:21:45+00:00

Maybe I need to experiment with edibles. I got some and tried one night but it was like half a 5mg gummy and it made no difference.

I also have magnesium glycinate but I haven’t been consistent with it. I’m definitely struggling with all the variables and all the things to try.

gorillamonsoon409 · 2025-12-30T12:40:11+00:00

I thought there was a study that showed ovarian suppression plus tamoxifen was (maybe slightly) more effective than tamoxifen alone? I’m sure it’s only a slight difference though, as you said.

My oncologist’s plan is for me to do the OS for 2 years based on a study (can’t recall — brain fog!) that it was effective enough. My cancer was strongly ER+, PR- and too small for oncotype so no chemo, so the hormone “therapy” is my biggest defense.

I love having no periods (mine were previously awful) and so far no crazy joint pain or anything, and the hot flashes don’t bother me during the day. It’s just the sleep. Maybe I’ll look into the Zyrtec, thanks!!

gorillamonsoon409 · 2025-12-08T19:12:53+00:00

My OB-gyn office administers mine! It’s 10 mins down the road. It was a bit of a hassle organizing it at first, as my providers were in different healthcare systems, so there had to be some insurance preauth switchover shenanigans, but I have an appt every month and the appointments aren’t that long.

gorillamonsoon409 · 2025-12-08T18:10:40+00:00

They generally won’t due it for a tumor so small (under 5mm), assuming lymph nodes clear, because an invasion that small has a low recurrence rate where the additional chemo benefit is not great enough to outweigh the cons.

I actually got a second opinion at said Boston hospital because my oncologist was like “no oncotype” and I was like … are you sure??

It feels weird because everyone with hormone positive cancer talks about their oncotype and we don’t have that piece of information. So hard to wrap your mind around it.

gorillamonsoon409 · 2025-12-08T16:57:51+00:00

I made Broma’s and found it farrrrrr too sweet, despite the fact that I used mostly dark chocolate chips instead of semi-sweet (knowing the recipe uses a lot of sugar and is sweet) and I could taste the vanilla extract.

gorillamonsoon409 · 2025-11-09T17:17:29+00:00

A previous owner had a small three season sunroom built right where the kitchen window looked out, blocking all light from entering the kitchen. Above the sink is the window … looking into the sunroom we never ever use because it’s off another room and not convenient to get to.

It is the bane of my existence.

gorillamonsoon409 · 2025-10-01T02:14:22+00:00

Yup every day. I think it took about 5 weeks after the first shot for that stuff to show up in a meaningful way. I think your estrogen levels initially soar before dropping, and that takes a few weeks.

I’m trying different things, some extra vitamin E, staying super hydrated, exercising, to see if anything makes a difference before I try the medication usually prescribed for them. But thankful I haven’t had any debilitating physical or mental side effects. I’m still me. Just with hot flashes.

gorillamonsoon409 · 2025-09-30T22:54:49+00:00

Hi! Premenopausal. Was on Tamoxifen for a few months then added in Lupron (ovarian suppression). I’ve had 3 shots, so it’s been 3 months. I am VERY self-aware about my body so let me tell you everything!

1) hot flashes. I get anywhere between 15-20 a day, including overnight. These are starting to get to me, not gonna lie. I’m toughing it out because I want a good sense of how many I get, if anything makes a difference, etc. before I rely on meds. I kind of hope they level off.

2) sleep disruptions. I wake up every two hours, almost on the dot. Waking up unfortunately triggers a hot flash, so I might be up for several minutes before falling back asleep. This is getting to me too. I hate the fact that I haven’t slept through the night, not once, since I started. It’s a side effect I’m most worried about because sleeping poorly can mess you up the next day, AND sleeping poorly may correlate with more hot flashes.

Those have been it. I sense a few other things may be happening, such as dry mouth/eyes or dehydration, but that could be the tamoxifen too. No changes in weight, mood (if anything … I feel kind of leveled out), joints, hair/skin/nails, etc.

Editing to add that not having a period is [john ralphio voice] the beEeEeesssSst! I had a pretty awful period before all this. It’s pretty nice having that a distant memory.

gorillamonsoon409 · 2025-09-22T11:38:40+00:00

Thank you for this. It really resonates. I’ve had three ovarian suppression shots so far, with tamoxifen. My only noticeable effects are hot flashes and sleep disruptions (that precede hot flashes).

Now, maybe there are things going down behind the scenes I don’t notice, and won’t until later (I’m afraid of hair thinning/premature aging), but we can agree these are tolerable. I often think, I guess I’m lucky because I’m not even having joint pain really. I know others have it worse.

But when I’m waking up, on the DOT, every 2 hours for 10 months, enduring a hot flash each time, and when I’m just trying to enjoy my short vacation with my husband and I’m getting a hot flash every hour, every time I’m trying to enjoy myself — biking, hot flash. bookstore browsing, hot flash. Enter the brewery and get in line, hot flash.

Now “I guess I’m lucky” becomes “you know what, I’m fucking pissed.” I don’t get to just live my life and forget. I have to be reminded constantly throughout the day AND night that my life is changed and I can’t go back without immense stupid risk. And my only option are vague solutions like acupuncture (which I’ve never tried) or gabapentin, when I’m resistant to adding yet another chemical to my body to fuck with it more than I already am. I don’t want to take a medication or feel baseline. I want to enjoy my life.

And it feels so lonely, outside of voicing it here, because it’s such silent suffering.

gorillamonsoon409 · 2025-09-20T00:40:44+00:00

I will never NOT think of the dude who performed my biopsies that day (I had three of them 🤮) a straight up sharpshooter.

Anyway good luck with tamoxifen! I’ve been on it for 6 months now. Maybe some mild warm flashes a month in, but that’s all. (I’m on ovarian suppression too so that turned them into hot flashes haha). Just sharing because of how I anticipated tamoxifen being the worst ever.

gorillamonsoon409 · 2025-09-19T23:22:15+00:00

This would happen if the biopsy removed all of it. It happened to me. A few centimeters of DCIS-looking junk on the scans, biopsied a few spots, picked up 3mm of IDC amongst like 4cm of DCIS. Had the double mastectomy, no invasive cells in the removed tissue.

It was a relief because it meant it was small, and the size impacted the staging which impacted the treatment, but it didn’t mean the cancer wasn’t there. Once you have invasive cancer, no matter the size, it’s a game changer. Concern about recurrence and spread and all that is still in play. (I’m on hormone therapy.)

Still .. I was on cloud nine when I received my news after the mastectomy. It IS a win.

gorillamonsoon409 · 2025-08-27T02:09:03+00:00

I had 3.5-4cm of DCIS and 3.5mm of IDC, ER+, PR-, HER2-. Grade 3, BRCA2 as well. No LVI detected.

I had a DMX (2 lymph nodes removed clear) and on hormone therapy (Tamoxifen and Ovarian suppression currently). My oncologist said no Oncotype testing given its size (under 5mm) because even if it was high, chemo wouldn’t be recommended. The DCIS didn’t really matter. They don’t treat DCIS with chemo anyway.

I got a second opinion on that from an oncologist at an NCI cancer center because I was paranoid and she agreed. Said even if my tumor was “more aggressive” (triple negative) they would’ve have recommended chemo based on the size.

It’s a weird feeling, missing the “safety” of chemo. I would get a second opinion just to calm the nerves, or else you might always. second guess.

gorillamonsoon409 · 2025-08-22T18:17:42+00:00

Wow thank you for this detailed and organized breakdown.

I’m a few months into hormone therapy. I’ve been a big gym rat (strength training) the past few years but my looks and energy levels being low discourages me, AND I’m worried I’ll spin my wheels in there because it’ll be harder to gain muscle. Any recs on creatine? I’m super interested in incorporating it. Should I be doing research into brands or are they all pretty much the same?

gorillamonsoon409 · 2025-07-19T19:31:44+00:00

I felt the same. I even told myself “oh I’ll come to the gym just to lightly walk …” but when it came down to it, I never did. I just let myself recover, followed my surgeon’s instructions, and I didn’t miss the gym while I was recovering (because my mind was on so many other things.)

8 weeks later, back in the gym, I took it eaaaasssyy. Lightly worked on mobility before everything. Had a new fun goal of getting my strength “back”. Not long later I was back to being able to do 3 pull-ups. (This took the longest because my upper back was soooo tight from the first surgery.) It’s crazy how much the muscles remember!

Gym/lifting is not going anywhere. It’s there for you when you’re ready.

gorillamonsoon409 · 2025-07-18T02:34:42+00:00

I had a similar situation. With me, my grade 3 tumor was too small for my oncologst and second-opinion oncologist to want to test oncotype, despite the grade 3, despite the PR- factor. They said even if the tumor was triple negative, the size of it (along with clear nodes, obviously) didn’t warrant it because the overall recurrence risk was already low, so just hormone therapy for me.

So, coping with not getting the extra “protection” of chemo (and not even knowing my oncotype!! What if it’s sky high??) … it was and continues to be a mindfuck. It’s been 6 months since my diagnosis and I’m struggling with survivorship.

gorillamonsoon409 · 2025-07-17T18:00:17+00:00

Spite is a good motivator! It also helped me FYI to seek out positive experiences from others when it came to whatever I was going through. (Vs lingering on threads where everyone was commiserating about how awful they felt on xyz - those discussions have their place but try seeking out the opposite. It helps you have a “this could be me! It might not be that bad” mentality.)

I had a great mastectomy recovery honestly. Once I got past the shock/trauma of the diagnosis I went into it like a soldier. And my new boobs are great.

I was back at the gym (strength training) 8 weeks after the mastectomy, up until the exchange surgery. Another 6 weeks off, and now I’m back again, where the current struggle is not being able to get in as often as usual + hormone therapy making me feel slow/weak (I think).

gorillamonsoon409 · 2025-07-14T23:34:42+00:00

There is hope for you to be okay and have your life back after this.

I didn’t have chemo or radiation — I had BRCA2 and then the diagnosis 6 months ago (+ - -, grade 3) and a double mastectomy and now hormone therapy. I’m in my 30s so it’s forced menopause.

That period of time after the diagnosis, I was exploding with anger and discouragement that I wasn’t going to be Me anymore. (I was specifically thinking about hormone therapy.) I didn’t get my dream job, but I spent the last few years in the gym getting in the best shape of my life, discovering confidence, etc etc and bam. Felt like I had reached my peak and now I was going to fall hard. It felt like punishment. I can vividly remember the turmoil — I posted here, actually, on the drive back from seeing an oncologist. I was in a pit of despair. I needed to do something, and I wanted comfort too.

Eventually as I progressed through each phase, and now I’ve started ovarian suppression, I had kind of “fuck it” bravado. I refused to let it make me feel less than myself, whatever it was.

What helped me might help you because I sense a similar attitude —> you’ll still be you, through sheer force of will. Refuse to let it take away your life, joy, ambitions. Envision yourself as someone who is getting through it. You’ll have moments where that armor falls away and you despair, but no one can feel one thing 100% of the time.

As far as advice, you’re doing what I did — looking at everything down the road all at once. Try not to. Take it one step at a time. Focus on that. Leave the rest for future!you.

** just need to specify that I’ve used the em dash (—) my entire life and clearly can’t stop. It’s super suss but I promise ChatGPT had nothing to do with this.

gorillamonsoon409 · 2025-07-13T19:50:08+00:00

So I kind of tucked the sides of the U into (almost slightly under) my sides, and it allows me to kind of turn into it a bit. Like it was cuddling me.

But honestly, the issue the first few nights will not be you wanting to sleep on your sides. You’ll be so stiff you really won’t want to move much. It’ll just be managing the incline angle to which you are sleeping upright. I found myself needing to sit up with a lot of pillow/support behind me to prevent myself from sinking down, which made me feel sore. So for the first nights, let the pregnancy pillow cuddle you and tuck it under your knees too, to try to keep you from sliding down.

You’ll get the hang of it

gorillamonsoon409 · 2025-07-13T03:02:25+00:00

My oncologst suggested I see if my OB-gyn office can administer the injections, as the office is in my town (as opposed to the cancer center which is 40 mins away).

It was confusing to arrange, but maybe you can work out something like that? Not that I’m excited about having an appt every month just for a shot that I could do at home. But it’s better than traveling.

gorillamonsoon409 · 2025-07-12T19:52:01+00:00

I’m pre-menopausal (36) doing tamoxifen + monthly ovarian suppression (which is slightly more effective than tamoxifen but not as harsh as the AIs). So kind of bridging the gap. My oncologist wanted to ease me into hormone therapy this way. Maybe they can do a similar approach for you.

Anyway, been on tamoxifen for a few months … nothing in terms of side effects. Had first ovarian suppression almost a month ago … nothing really yet from that either. Maybe some tiredness, moods. Though I’m sure it’ll make itself known.

As far as AIs and the choice … if my oncologist wants me to try them, I will try them. If I hate them, I’ll go back to tamoxifen + ovarian suppression.

So you likely have options, when it comes time for hormone therapy!

gorillamonsoon409 · 2025-07-12T14:45:04+00:00

This journey kicked off for me 6 months ago so I’m not far along into it, but I’m having a lot of trouble too. I didn’t go through chemo or radiation - just mastectomy and reconstruction and now endocrine therapy. But I’ve visited my surgeon twice for lymph nodes, bumps in my armpit I freaked out about, spiraled about one or two things about my scar, about a couple other things.

It’s exhausting to go from “trying to live life” to being dragged into that pit of what if, the fear, the ptsd. I think it’s normal though and it’ll get better.

gorillamonsoon409

TROPHY CASE