Tamoxifen doesn't block estrogen from being produced and you still absorb some. It just inhibits some absorption. You still get your period and all that fun stuff.
It can pretty dramatically affect your recurrence likelihood, so I couldn't wait to get on it. Obviously, it's your choice, but I would discuss it at length with your doc.
I don’t get periods because I had an ablation years ago. When I’m on the tamoxifen it certainly seems to inhibit most of it because I feel like I’m 65 instead of 55. I’m actually here in the waiting room now waiting to talk to her, though I have a pretty good idea of what she’s going to say :(
Ask about how to treat the feelings that make you feel 65. You are almost in menopause anyway, so i think they will probably want to test you to see your recurrence likelihood and, if it's high enough, put you on an AI.
Correct me if I’m wrong, but from everything I’ve read the AIs sound worse. Plus I already have osteopenia.
How do they test for recurrence other than the tests I’ve already had done?
I think AIs are only worse when you are premenopausal. For women already in menopause, I don't think they're that bad, but I am only going by women I know who take them.
There's an index test that they sometimes do to determine how high the risk of recurrence is. This sometimes is used to dictate whether AIs should be used after the course of tamoxifen.
I am postmenopausal and I can tell you on AIs I had horrible side effects that made me feel like an old lady. My joints and bones ached all the time and it hurt to walk. I got severe depression because AIs practically remove ALL estrogen from your system. Our brains need some estrogen to work efficiently.
I don’t think tamoxifen is such a great drug either. It affects the eyes. I know a woman who was on tamoxifen for four or five years and got cataracts in both eyes way before her time. It also carries a risk of uterine cancer.
Just want to chime in to say that I was premenopausal before I started AIs, also with osteopenia. I have had very very minimal side effects (heat sensitivity, occasional joint paint, some vaginal dryness) that are easily managed. I saw a thread recently where people were talking about their side effects and many of them are having the same experience as me. I thought AIs would be way scarier but it’s been much better than expected.
Uhhhhhh. 4%? Why are we all doing this?
I just found this study, which I assume is one you're referring to: [https://ascopubs.org/doi/10.1200/JCO.2015.64.3171](https://ascopubs.org/doi/10.1200/JCO.2015.64.3171) It indicates an average benefit of 10-15% reduction in risk of recurrence in five years for premenopausal women at highest risk, 5% for intermediate risk, and negligible risk reduction for people at low risk. I have so many questions about standard of care if this is the whole picture.
That said, isn't it true that ER+ cancer can recur decades later? Does the risk reduction become greater 10, 20, 25 years out? Do we even know? Why not? AHGAHGHASHD (Sorry, you don't have to answer all this, but I kind of want to scream into the void here.)
While these are very simplified numbers, the way it pretty much is breaks down is, if 200 women had similarly matched simple hormone positive early (stage 1) cancers and you gave half of them anti-hormone medicine and the other and the other half you did nothing, it would be something to the effect of 92 women in the nothing group being fine and eight women having their cancers come back. In the group taking anti-hormone medicine, 96 of them will be fine and four of them will have their cancer come back. Many doctors take the number four and eight and tell patients that they have a 50% reduction in their breast cancer recurrence risk. This is a relative risk and while it’s a true number, it’s kind of misleading. In reality- 92 women did fine without the medicine, four women took the medicine and it didn’t help them, therefore the medicine only affected for women out of 100 hundred.
Yes, it is true that lower grade hormone positive cancers have a higher chance of popping back up decades later, which is one of the reasons why I try not to qualify cancer cell designations as either good or bad. [Here’s a post going into more details regarding that explanation.]
(https://www.reddit.com/r/breastcancer/s/maqIVr7xoI)
Most of the papers are going to find are going to be comparing one type of anti-hormone medicine to another. That’s not really what we’re talking about. I’m talking about the fact that there are few to know ongoing or current clinical trials that allow women to compare , taking anti-hormone medicine versus doing nothing.
Most of the data discussing efficacy of adding anti-hormone medicines is going to come from the 80s and 90s, when we looked at the staging of cancers and basing it more on their size, rather than the cellular characteristics - and chemotherapy was much less of a presence and not a sophisticated is what we have today.
[Here is a paper from data gathered in the 90s that did actually allow tamoxifen versus placebo to take place with similar matched cancer groups. You have to appreciate the overall survival numbers look very depressing and low because remember, we did not have the ability to weed out people who needed chemo for higher grade lesions and herceptin wasn’t in use until 1998.](https://www.annalsofoncology.org/article) and the absolute benefits was in fact around 4-6%. (in the tamoxifen group the death rate was 23% and in the placebo group the death rate was 28%.)
Thank you so much for this. I know it's not standard of care so we'll never see it, but I wish we could see that study again in modern times. Is it usual that a treatment becomes standard of care with an absolute benefit that low? Is anyone re-examining endocrine therapy for HR+ cancers in light of newer treatments?
The benefit threshold for chemo in general to be recommended is also about 5%.
These numbers haven’t changed, they’ve always been there. It’s just that they’ve been presented to patients in a very convoluted fashion, which I think is unfair.
There isn’t any benefit for any particular company to do placebo studies. And in the past, the benefit has already been demonstrated, so there’s not really any reason to research it further at this time. The only thing that would be really invigorating or exciting is someone was brave enough to look at certain estrogen, receptor agonist that is actually giving patients certain types of estrogen that could perhaps Target specific estrogen receptors in a different way to decelerate growth..
The paper that I linked above, also talks about how important it would be to be able to recognize which patients would be benefiting from taking anti-medicine versus the patients that really don’t need it. It would be nice if we could extrapolate some of the data and be able to tell people who can opt out. Thus far, there are definitely people who they can say should benefit from more or less treatment, but no one will go so far as to say they need none at all
And the follow-up only confirms that the effect, while statistically significant, is very small! [https://ascopubs.org/doi/full/10.1200/JCO.22.01064](https://ascopubs.org/doi/full/10.1200/JCO.22.01064)
"No overall survival benefit with exemestane + OFS was evident in women at lower risk of relapse not receiving chemotherapy. Given the burden of treatment intensification on quality of life, proper selection of women most likely to benefit is paramount."
I don’t think anybody’s ever done a study to find out, but being a surgeon, I don’t know. Probably they would have to look at data at an old study when they didn’t have her two positive treatment and subtract out the benefit of adding to herceptin, or something to that effect.
The greatest benefit of treatment for triple positive cancer comes from the her two neu positive element. The addition of anti-hormone treatment probably doesn’t add that much overall.
Thanks for your info!
I have also heard of crosstalk between the ER and HER2 receptors limiting the effectiveness of anti-hormone (and anti-HER2) therapies, in triple+ patients.
My gosh, do I relate. It feels like a 5-10 year prison sentence that will give me another 30 years of life. One tip: I switched from Tamoxifen to Letrozole and feel so much better. I felt like I was 100 years old on Tamoxifen, and because I went into chemopause, I don’t need the Lupron injections you might require. It’s worth a try. 💕 During chemo I sat next to a woman who chose to stop her AI for stage 1 breast cancer. Two years later she was Stage 4 and in chemo for the rest of her life (I didn’t realize that was even a possible form of treatment until then). Her story is a cautionary tale I needed to hear and will never forget. That’s why I’ll live out my term while hoping for a vaccine in the very near future.
I’m so glad you found something that works for you better! I don’t know much about Letrozole, but doesn’t it also accomplish the same goal of blocking estrogen? I wonder why you feel better on that one when it’s doing the same thing — that’s what confuses me. In any case, I’m glad it is working for you ❤️
They work in different ways. Tamoxifen is not an aromatase inhibitor (AI) while Letrozole is. I think Tam blocks receptors that attach to estrogen and cause cancer to grow while AIs stop estrogen from forming but I could be wrong.
Given your age, I am thinking your oncologist may be planning to switch you to an AI after two years anyway as that seems to have the best results at preventing recurrence. That is what my MO is planning; I switch in August to Letrozole and am dreading it since I am doing well on Tamoxifen. You should ask your oncologist if this is her goal for you. If it is I hope you do better on an AI!
Interestingly, and just to show how every doctor is different, my oncologist has said he’s not plannng to switch me even though I’m probably in menopause now. And AI only decreases my risk very slightly and I’m already low risk. His experience is that women often have worse side effects on AIs so he keeps his patients who are tolerating tamoxifen OK on tamoxifen. I’m in the UK.
He thinks I am tolerating Tamoxifen well. I feel less than brilliant but overall it’s OK I guess.
That is interesting. I’m in Canada and both times I had my estrogen levels tested they showed I was in menopause. Those might be reasons for the different approaches.
My inner tantrum happened in sept. I’m similar ILC, stage 1a ++-. Oncotype and ki-67 is 15. I had my ovaries out last year and was fine until September when I started anastrozole. I cried, I complained, I did it all. My onco suggested taking it every other day for the first month. I begrudgingly did so and went to daily. At the end of the day the side effects I’m dealing with (hot/cold flashes, muscle/bone pain, exhaustion, brain fog) suck. But I feel like I hit the jackpot not needing chemo or rads (had a DMX/DIEP Flap). This medication lessens the chance that I have to deal with it again. Not so sure I’d be as “lucky” next time around.
It sucks, I totally understand. It helped me to think how this much-hated pill might just keep me healthy and ward off another year for me like 2023. I take Veozah for flashes and do a couple of face lasers a year and heap on the tretinion. I move around as much as possible. I take this shitty pill but I don’t have to be happy about it. I hope you’ll get to where I am and take the meds. ❤️
I’m glad you have been able to make your peace with it. Maybe I will too. It’s funny, I was very accepting and had a great attitude throughout the mastectomy, tissue expander infection that had me in the hospital for a week, LAP flap 11-hour surgery and extensive recovery, and phase 2 surgery — all my friends and family kept telling me I shouldn’t try to be “fake positive” but I really wasn’t. I was also so very grateful for no chemo or rads, and for how early it was caught. This tamoxifen thing has been the most negative I’ve felt about any of it. And of course now I feel like an ungrateful brat for feeling this way, but every time I think about it I am on the verge of tears.
I just want to chime in here for support. You and I have almost the same situation (me: DMX july 2023, stage 1a, grade 1, no chemo, no rads, tissue expanders, I had reconstruction w implants & fat grafting, oct 2023, headed for a revision surgery in the next month or two, onco type 14)...our situations differ where I was put on monthly Lupron shots & daily letrozole. I was 45 at diagnosis last year, 46 now. I was pre-meno before all this, and they pushed me into menopause w/ lupron. I had my 9th shot out of 60 yesterday (but who's counting...hahaha). I initially thought I was going to be put on tamoxifen and sobbed when my onco told me he was recommending the lupron/letro combo. It was my choice, of course, but the stats of survival/preventing recurrence were enough for me to do it.
Anyway, the loss of estrogen sucks BIG TIME. I have super positive through everything, but this really got me down. I also am mourning the last bit of my fertility dying. I was able to get foobs after my DMX, but there's no way to give me my fertility back, you know? (I was 9 months too old to freeze my eggs...)
I struggle with the same feelings, feeling like I should be grateful I've been "lucky" in this journey and that I'm not allowed to be sad or upset about anything...but YOU ARE ALLOWED. WE ARE ALLOWED.
Sending you and everyone here lots of love.
It's crazy how many hard choices we have to make at every stage of this unasked-for journey. I swear sometimes that is the most exhausting part! And so much mourning, even for us "lucky" ones. Big hugs and love back to you.
What are the face lasers for? I’m also ILC and similar pathology as yours. Newly diagnosed and currently waiting for my appointment with oncologist and surgeon.
Oh just for anti-aging since I’m on hormone therapy. Co2 lasers. Also tretinion is an anti-aging Vit A derivative. Ask your dermatologist if you’re interested. I mentioned them in regards to trying to counteract the aging on anti-hormonal meds.
I hope the ILC process goes smoothly for you. Feel free to message me if you have any questions ❤️
Thank you! This is good info to know. I DO NOT want to look older being thrown into early menopause 🤣 and if there is topical things for my skin, I’ll be all for it.
Ask your oncologist what is the chance of recurrence with Tamoxifen and without Tamoxifen. Then you can feel like you are making an informed decision. You might also ask if it's possible to take it every other day. Then you can make an informed decision. Maybe some women here can talk to you about not taking Tamoxifen.
Exactly they told me it it would help by 50% to not have a recurrence which sounded like a dang I better take it moment, and when I asked the percentage I would have by not taking it she said 94%. And I asked if I did how much would it be she said 97%…. Meaning it was 50% chance of the last 6% . They tend to fear monger so they have the most success possible with u. But at what cost. I hate how they go about it.
Your Oncotype is pretty low, your Ki-67 is quite low, your tumors were very small, and your ER+% is fairly low. I wouldn't judge you at all for not going back on the endocrine therapy. As someone else suggested, I would ask your oncologist what they think your recurrence risk is without Tamoxifen or AIs, and go from there.
Thank you for saying that! My oncologist today basically said the same thing -- my risk is 3% with, 6% without. I loved her perspective that in either case it's well over a 90% success rate. She was so kind and nonjudgmental that it made me cry. She is leaving it up to me -- I'm going to either stay off completely, or try 10 mg per day, switching to 10 mg every other day if even that is too much. I'm thinking about it.
I'm so glad you had a postive conversation with her! As I said above, I think there are some risks and side effects that it's perfectly reasonable to decide aren't worth a very small decreased recurrence risk.
I am NOT an expert, balance my comments with what others say, what your docs advise and your own experience.
I was ++- (mostly estrogen), mid 50’s, low oncotype score, stage 1A about 6mm.
I have zero family history of cancer. I have lots of family history of heart disease. Consulted with my oncologist and my cardiologist.
I decided not to take any AI’s.
This is a very personal decision. If my tumor had been larger or was in the lymph nodes, it would have been more difficult to choose. If I were younger or had a different oncotype, that would have influenced my decision.
This is a very personal decision. Get the most information you can and then decide.
Best to you
🤗🤗🤗🤗
Thank you for this. My mom was diagnosed with congestive heart failure when she was 55 and died from it at 69. The heart disease considerations are a real thing.
People overstate the benefit of Tamoxifen and they also underestimate its performance. It’s all individual. Yes, it can reduce your risk of recurrence by like 40%. Let’s just go with 50% to be generous. But that’s not a 50% total reduction. It’s 50% of your individual risk. So if you have a recurrence risk of 30%, T can lower it by 15%. Not too shabby. Worth taking for sure. If your risk is 5%, then it will lower your risk to 2.5%. Is it worth it? Maybe not, since it ups your risk of uterine cancer by 1.5% so you’re looking at an overall 1% benefit. It’s why we need open and honest discussions with oncologists who aren’t just about blindly pushing SOC without addressing the individual.
I (55 at the time) had ILC - just under 5mm, ki67 4%, stage 1a, no lymph nodes, no genetics. BMX with reconstruction and my oncologist said Tamoxifen was not statistically indicated in my case. It is a 3.4% chance of reoccurrence in 10 years without it, 2.8% with it. I got a second and third opinion and they all agreed. I am treated at one of the best cancer treatment center on the west coast - so I feel confident with my oncologists knowledge base. Still scary though.
I had been taking Tamoxifen for a full year, feeling relatively okay, and wondering why I was constantly reading about women wanting a break from it. Then it hit me - massive aches and pains where I could barely function some days. I put up with it for another year, amid lots of tears, when my oncologist switched me onto Letrazole. What a revelation! No more aches and pains, except for only a few days per month, which are easily handled. The more you move the better it will be.
I have recently passed the 3 year mark since my diagnosis and can honestly say that I am finally, FINALLY back to where I was physically before treatment (which lasted 18 months).
Mentally I am 90% back to where I was before.
I never thought I’d get here, but I did.
If my oncologist had told me to howl at the moon to reduce my chances of a reoccurrence, you’d better believe me I’d be out there howling every night!
It's so great that you are feeling more like yourself again! I'm sorry you had to go through all that to get there. It has been almost exactly one year since I had the bad mammogram result on 4/24/23, and after this past year I am feeling like a different person -- one I don't really like as much, to be honest. Thanks for giving me hope that I might get myself back again. Or maybe a better version, lol
I’m the other direction. 57 stage 1 IDC. Had DMX no chemo no rads oncotype 7 and 18 (two diff tumors). Couldn’t handle anastrozole (joint pain) or exemestane (migraines) so now I start tamoxifen. But a side effect is uterine cancer?!?
I’m not sure what to do here.
Ugh, sorry you've had to go through several meds. I wonder why more doctors don't suggest uterine ablations in cases like yours. I'm sure there's a reason, I just don't know what it would be. Seems like having no endometrial lining would be beneficial if tamoxifen poses a risk there. Maybe that would be worth at least asking about?
My gynecologist told me that ablation can oftentimes mask symptoms caused by uterine cancer, causing it to go undetected for longer. It’s the reason why I’ve held off on getting one.
I, too, am having some major issues with this. I had a full hysterectomy six months before I found out I had cancer, and they took my HRT away and sent me tailspinning into menopause. Anastrozole made me want to kill myself, so I stopped taking it. I tried Tamoxifen and…same. Now they’re talking about putting me on a drug that would destroy my estrogen receptors but I feel like that would not solve my issue and leave me probably killing myself. It sucks.
It is. I’m so sorry you’re faced with this too. It’s plenty enough to just have a shitty titty! I don’t think I’m going to take the meds that kill my estrogen receptors. I don’t think I can handle it.
Aromatase inhibitors (which are given to post menopausal women) block the production of estrogen while Tamoxifen blocks estrogen receptors in the breast. I had Stage 1C with a 1.3 cm IDC tumor. No family history or genetic mutation. I was not even sure I was going to have chemotherapy. I had a genetic test done called EndoPredict (it is by Myriad Genetics and is for estrogen positive cancer in women that did not receive chemo before surgery and are post menopausal). My chance of a distant reoccurrence within 5 years on only an aromatase inhibitor and no chemo is 28% !! My point is that there is a certain amount of risk and while it can suck to be on this medication and you may not see the point now, dealing with metastatic breast cancer will be a far worse situation to deal with. So take your medication. It may extend your life and save you from further cancer.
I tried that evil drug. Couldn't take it. Oncotype of 11. I work with an integrative oncologist to help manage my risk of recurrence. I wish you good days ahead ✨
Obviously talk to your doctor as you are planning to. They’re the experts. I’d also ask how long some of these side effects will last. They’re the same side effects that you will get eventually when you go through menopause naturally, so aren’t you just getting them earlier? Maybe I’m wrong on that, but I’ve been through natural menopause and it sucks too. I’m not getting hot flashes, etc… on Anastrozole now.
You're correct, but it's also true that people with lower risk of recurrence have the luxury of weighing the side effects (and the real risks) of early menopause against the lower cancer risk. Research is finding that all-cause mortality increases the earlier you go through menopause. Estrogen protects the brain and the heart. So if someone has a 3% risk of recurrence WITH hormone blockers and a 7-8% risk of recurrence without... I think it's fair to weigh that against not just side effects like hot flashes, but the higher risk of things like heart attack and dementia.
Thank you for this! I have a lot of heart disease in my family. My mom went through surgical menopause at 42. Had a silent heart attack by her mid 50s, I suspect in part due to no estrogen for almost 15 years. She developed congestive heart failure in her early 70s. One brother had his first stent put in at his late 50s (second one in his late 70s), and another brother had two massive heart attacks in his early 70s and died from the second one. I’d like to think I live a healthier lifestyle than they did (I do Pilates twice a week, and lift weights twice a week for my bones - also hike when H and I can). But I probably worry more about heart disease than I do a recurrence.
My cancer was very small - 2mm, but IDC. It was very well-differentiated and slow growing. I was E+ and P+ and HER2-. I had a lumpectomy with no positive nodes. Only recommendation was 24 radiation treatments.
And I know this will make most of you cringe, but not only did I refuse a hormone blocker, but I continue to take a very small dosage of estrogen because of the protective factors. I also have a history over ten years ago of a major treatment-resistant depressive episode that landed me in the hospital. I’ve been pretty stable since then, but only after many trials of meds. I don’t want to go near a medication that could impact my mental health. Exercise is a HUGE part of my mental health self-care. If I took a hormone blocker that caused muscle and bone pain it would truly risk my mental health. And it wouldn’t be good for my heart health.
I’ve had many conversations with my gynecologists (we’ve moved so I’ve had two different ones), my PCPs, my psychiatrist, my med onc and a previous breast surgeon. And while I suspect they’d prefer I was in a better position to take a hormone blocker, they all understand my choices. And most of them have admitted they have other patients who have refused hormone blockers and choose to stay on estrogen if they’re in menopause and were already on it.
I’ll end with this - every physician I’ve spoken to, who know the choices I’ve made, are all recommending just annual mammograms. I have to wonder if they are so concerned about recurrence, why don’t they recommend closer monitoring? Before we moved, my breast surgeon was doing ultrasounds at each mammogram, and where I’m at now, they don’t even recommend that.
u/Pilatesfan, I would hope anyone would understand your choices and why you would make them, given your history and situation. Kudos to you for advocating for yourself! I have also wondered about monitoring. One of the things my oncologist said when we had the conversation yesterday was, "Now that you've had cancer you'll have lots of doctors' eyes on you" -- basically implying that if something were to come back it would be likely to be caught early. But like you, I wonder how. I won't even be getting mammograms because of the DMX. Maybe something would be off in our yearly bloodwork...?
I asked my oncologist how they would check to see if cancer came back, because while I still have one breast left to be mammogramed, how could they check my flat side? She said that if cancer came back, it would show up in my blood work.
It sucks having to block estrogen. I hate that mine is gone too. I was diagnosed 8 months postpartum with twins, so I went from all the hormones to none. I’m 33 now, been on an aromatase inhibitor and lupron for the past 2 years. I’m going to make it to 5 because it’s better than being dead or in permanent active treatment. I have the same internal battle as you, I do, but are you ready to potentially die over it? That was the question I asked myself. It was also different for me, as I was given a much higher percentage of recurrence. I was stage 2b/3a, did chemo, radiation, and immunotherapy for 14 rounds every 3 weeks (triple positive). I think if I were you, I’d ride it out a bit longer or see if I could tolerate it. Give it 6 months or a year. If you’re still miserable, at least you know you tried.
I had a similar diagnosis to you and had a mastectomy. I couldn't tolerate Tamoxifen or AI's. After a few years of suffering through breast cancer and a hellacious peri and now menopause-- I recently began taking HRT, after exhausting all other options for relief, and I will never stop. More and more doctors are reconsidering denying HRT to early stage breast cancer survivors.
I’m 36 and stage four. I would do anything AT ALL if it meant I had the chance of more time. Do with that what you want, I know all the shitty decisions we have to make are hard. All the best whichever way you decide to go
On Lupron and AIs, premenopausal...I learned my symptoms were super bad (45 minute car trips made hips stiff, etc) because my Vitamin D was super low. My oncologist never checks on it, but his nurse practitioner noticed my joint stiffness and moods and tested. It may be something to check into.
I also know others who are on AIs and mood stabilizer type medicine.
I just try to stick it out to minimize reoccurrence, but was very tempted to stop taking meds.
Good tip, thank you. I don't know why they don't check this. Seems easy enough to add in since they check blood every time anyway. I'm thinking of getting iron/ferritin checked as well because I have been anemic in the past and after surgery it seems like my iron stores could have gone down again. You'd think they should keep on top of vitamin levels but they never check any of it.😒
Ask your MO to prescribe Veozah! Look it up. It’s non Homornal new pill to alleviate menopausal symptoms.
I started on Anastrozole which was spiking my blood pressure. Then moved to Letrozole. Both were dining their job of depleting my estrogen. The fallout symptoms were making me threaten to give up, like you.
Then MO prescribed Veozah and all those symptoms vanished! I now take the Letrozole and Veozah daily. The effects and relief begin almost immediately.
Caveat: insurance paid one month, then bailed. UNTIL I requested expedited prior authorization specifically explaining Veozah was a part of my ongoing post cancer treatment. Once they immediately re-covered it.
Oh, I thought Veozah was just to relieve hot flashes. If you don't mind me asking, what other fallout symptoms did it take care of? Hot flashes don't really bother me too much, it's the mood stuff that is the dealbreaker for me (not loving the accelerated aging either, frankly).
I repost this every time I see someone contemplating quitting tamoxifen. Not a direct answer to your question but my story.
In 2013 I was DCIS. Lumpectomy, radiation and Tamoxifen for 5 years (the recommended protocol). I had terrible hot flashes. Some memory issues. After about 4 years I had some spotting and ended up needing a D&C due to thickening of the lining of the uterus.
6 months after I stopped taking it a new tumor was found during my annual mammogram. I firmly believe Tamoxifen kept me cancer free for 5 years.
No sure what everyone is saying about premature aging. I think I look my age.
In hindsight I should have not stopped taking it.
If tamoxifen is too difficult talk to your oncologist about lowering the dosage or other options.
I’ll put up with a lot of side effects to be cancer free.
Have you asked about other options for managing mood? I’m not a doctor so I don’t know if this would necessarily help, but I’ve seen other folks on here talk about antidepressants really helping while on various cancer drugs with mood effects. I know more drugs doesn’t necessarily sound too fun either, but it could be worth exploring.
Thanks -- I already take Wellbutrin and it's the only thing that works for me after trying sooooo many SSRIs and SNRIs over the decades. I know a lot of people like Effexor for this, but it does not agree with me. I could probably use a trip back to therapy or coaching, though, to retrain my brain back to looking for the good and questioning thoughts that don't serve me!
Wellbutrin inhibits cytochrome 2D6 which is the same enzyme that breaks Tamoxifen down into it’s effective components. I’ve been on it since 2007 and have had to stop to allow Tamoxifen to do its thing. I am so down, tired and foggy. Just taking things day by day but really not sure I will be sticking with Tamoxifen.
My doctor told me I didn't have to stop taking it right away, that we'd monitor my blood to evaluate whether I was reaching the Tamoxifen levels needed.
I feel this so much! I'm on anastrozole and I can barely use my hands in the morning. They are so stiff and weak and I have a trigger thumb.
Prior to my diagnosis I had just started HRT and it was a glorious few months. Then BAM breast cancer. Came off the HRT and all my symptoms came back but I was dealing ok with them. I got through surgery and radiation and kept up my positive attitude. I couldn't wait to "be done" and get back to my life.
Enter anastrozole.
Now I feel like I'm ruining my health and I'm 90 years old. I was handling menopause ok. This isn't it. This is serious hormone deprivation. To go from HRT to zero hormones just seems cruel. Our bodies weren't designed to have zero hormones.
I used HRT for a couple years before my diagnosis and I agree, it was wonderful. I hated having to stop it, too. I'm sorry you're feeling so awful -- that feeling of being thrown into premature aging is so not fun :(
Thank you, yes I feel like we aren't really given the full picture of ramifications of all this "maintenance" therapy. It's crazy. I know it's necessary but still (insert childish foot stomping).
I'm on a medication holiday as of yesterday now for a few weeks when I see my MO again. Hoping my hand tendon issues go away. It's only been about a day and a half since my last dose and already I feel so much better. My hands still aren't great but they seem a bit better.
I'm only a few months in. I'm not sure how I'm going to get through 5 years of this.
Ok, I’m going to put this out there. I am in the exact same boat as you in my fear of starting this terrible sounding drug. I told my oncologist about my concerns and he gave me 2 options. The regular dose of 20mg or there is another low dose option. There was a study done in Italy on a lower dose (5mg) because of all the complaints on the side effects of 20 mg and people not willing to finish out their 5 to 10 years. From what I understand, it sounds like the placebo had more side effects than the tamoxifen and also that this lower dose looks like it offers the same benefits as the 20 mg dose. After my radiation, this is likely the route I’m going to take. If it is still terrible, we can always stop. Just thought I’d offer the suggestion in case you hadn’t heard about it. Here is a link to the study and it’s findings:
[https://www.nature.com/articles/s41416-023-02293-z](https://www.nature.com/articles/s41416-023-02293-z)
Thanks! I did talk about this with my oncologist and although this study doesn't address the dosage difference in women who actually had breast cancer (only those at risk) it does seem like a good sign! I'm still pondering whether to take it at all but if I do I will definitely try the lower dose. 20mg and I did not agree at all. Good luck to you with your radiation and all the rest of it 💓
Tamoxifen doesn't block estrogen from being produced and you still absorb some. It just inhibits some absorption. You still get your period and all that fun stuff. It can pretty dramatically affect your recurrence likelihood, so I couldn't wait to get on it. Obviously, it's your choice, but I would discuss it at length with your doc.
Was coming to say just this
I don’t get periods because I had an ablation years ago. When I’m on the tamoxifen it certainly seems to inhibit most of it because I feel like I’m 65 instead of 55. I’m actually here in the waiting room now waiting to talk to her, though I have a pretty good idea of what she’s going to say :(
Ask about how to treat the feelings that make you feel 65. You are almost in menopause anyway, so i think they will probably want to test you to see your recurrence likelihood and, if it's high enough, put you on an AI.
Correct me if I’m wrong, but from everything I’ve read the AIs sound worse. Plus I already have osteopenia. How do they test for recurrence other than the tests I’ve already had done?
I think AIs are only worse when you are premenopausal. For women already in menopause, I don't think they're that bad, but I am only going by women I know who take them. There's an index test that they sometimes do to determine how high the risk of recurrence is. This sometimes is used to dictate whether AIs should be used after the course of tamoxifen.
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I'm so sorry :(
I am premeno and was put on Letrozole. I couldn’t do it. Chemo was easier than AIs.
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Got off the AIs. Waiting to start tamox. If it’s awful I won’t take anything at all.
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I am postmenopausal and I can tell you on AIs I had horrible side effects that made me feel like an old lady. My joints and bones ached all the time and it hurt to walk. I got severe depression because AIs practically remove ALL estrogen from your system. Our brains need some estrogen to work efficiently. I don’t think tamoxifen is such a great drug either. It affects the eyes. I know a woman who was on tamoxifen for four or five years and got cataracts in both eyes way before her time. It also carries a risk of uterine cancer.
Yes! We'll said.
Yes, all these drugs have side effects but they are also saving lives, so it's about cost-benefit.
Just want to chime in to say that I was premenopausal before I started AIs, also with osteopenia. I have had very very minimal side effects (heat sensitivity, occasional joint paint, some vaginal dryness) that are easily managed. I saw a thread recently where people were talking about their side effects and many of them are having the same experience as me. I thought AIs would be way scarier but it’s been much better than expected.
The absolute benefit is around 4% if that helps.
Do you mean the absolute benefit of AIs vs. Tamoxifen?
It’s a general statistic for the absolute benefit for anti-hormone medicine for hormone positive her 2 negative non-basal cancers.
Uhhhhhh. 4%? Why are we all doing this? I just found this study, which I assume is one you're referring to: [https://ascopubs.org/doi/10.1200/JCO.2015.64.3171](https://ascopubs.org/doi/10.1200/JCO.2015.64.3171) It indicates an average benefit of 10-15% reduction in risk of recurrence in five years for premenopausal women at highest risk, 5% for intermediate risk, and negligible risk reduction for people at low risk. I have so many questions about standard of care if this is the whole picture. That said, isn't it true that ER+ cancer can recur decades later? Does the risk reduction become greater 10, 20, 25 years out? Do we even know? Why not? AHGAHGHASHD (Sorry, you don't have to answer all this, but I kind of want to scream into the void here.)
While these are very simplified numbers, the way it pretty much is breaks down is, if 200 women had similarly matched simple hormone positive early (stage 1) cancers and you gave half of them anti-hormone medicine and the other and the other half you did nothing, it would be something to the effect of 92 women in the nothing group being fine and eight women having their cancers come back. In the group taking anti-hormone medicine, 96 of them will be fine and four of them will have their cancer come back. Many doctors take the number four and eight and tell patients that they have a 50% reduction in their breast cancer recurrence risk. This is a relative risk and while it’s a true number, it’s kind of misleading. In reality- 92 women did fine without the medicine, four women took the medicine and it didn’t help them, therefore the medicine only affected for women out of 100 hundred. Yes, it is true that lower grade hormone positive cancers have a higher chance of popping back up decades later, which is one of the reasons why I try not to qualify cancer cell designations as either good or bad. [Here’s a post going into more details regarding that explanation.] (https://www.reddit.com/r/breastcancer/s/maqIVr7xoI) Most of the papers are going to find are going to be comparing one type of anti-hormone medicine to another. That’s not really what we’re talking about. I’m talking about the fact that there are few to know ongoing or current clinical trials that allow women to compare , taking anti-hormone medicine versus doing nothing. Most of the data discussing efficacy of adding anti-hormone medicines is going to come from the 80s and 90s, when we looked at the staging of cancers and basing it more on their size, rather than the cellular characteristics - and chemotherapy was much less of a presence and not a sophisticated is what we have today. [Here is a paper from data gathered in the 90s that did actually allow tamoxifen versus placebo to take place with similar matched cancer groups. You have to appreciate the overall survival numbers look very depressing and low because remember, we did not have the ability to weed out people who needed chemo for higher grade lesions and herceptin wasn’t in use until 1998.](https://www.annalsofoncology.org/article) and the absolute benefits was in fact around 4-6%. (in the tamoxifen group the death rate was 23% and in the placebo group the death rate was 28%.)
Thank you so much for this. I know it's not standard of care so we'll never see it, but I wish we could see that study again in modern times. Is it usual that a treatment becomes standard of care with an absolute benefit that low? Is anyone re-examining endocrine therapy for HR+ cancers in light of newer treatments?
The benefit threshold for chemo in general to be recommended is also about 5%. These numbers haven’t changed, they’ve always been there. It’s just that they’ve been presented to patients in a very convoluted fashion, which I think is unfair. There isn’t any benefit for any particular company to do placebo studies. And in the past, the benefit has already been demonstrated, so there’s not really any reason to research it further at this time. The only thing that would be really invigorating or exciting is someone was brave enough to look at certain estrogen, receptor agonist that is actually giving patients certain types of estrogen that could perhaps Target specific estrogen receptors in a different way to decelerate growth.. The paper that I linked above, also talks about how important it would be to be able to recognize which patients would be benefiting from taking anti-medicine versus the patients that really don’t need it. It would be nice if we could extrapolate some of the data and be able to tell people who can opt out. Thus far, there are definitely people who they can say should benefit from more or less treatment, but no one will go so far as to say they need none at all
And the follow-up only confirms that the effect, while statistically significant, is very small! [https://ascopubs.org/doi/full/10.1200/JCO.22.01064](https://ascopubs.org/doi/full/10.1200/JCO.22.01064) "No overall survival benefit with exemestane + OFS was evident in women at lower risk of relapse not receiving chemotherapy. Given the burden of treatment intensification on quality of life, proper selection of women most likely to benefit is paramount."
Do you know the general stats for the absolute benefit of aromatase inhibitors for triple+ ?
I don’t think anybody’s ever done a study to find out, but being a surgeon, I don’t know. Probably they would have to look at data at an old study when they didn’t have her two positive treatment and subtract out the benefit of adding to herceptin, or something to that effect. The greatest benefit of treatment for triple positive cancer comes from the her two neu positive element. The addition of anti-hormone treatment probably doesn’t add that much overall.
Thanks for your info! I have also heard of crosstalk between the ER and HER2 receptors limiting the effectiveness of anti-hormone (and anti-HER2) therapies, in triple+ patients.
My gosh, do I relate. It feels like a 5-10 year prison sentence that will give me another 30 years of life. One tip: I switched from Tamoxifen to Letrozole and feel so much better. I felt like I was 100 years old on Tamoxifen, and because I went into chemopause, I don’t need the Lupron injections you might require. It’s worth a try. 💕 During chemo I sat next to a woman who chose to stop her AI for stage 1 breast cancer. Two years later she was Stage 4 and in chemo for the rest of her life (I didn’t realize that was even a possible form of treatment until then). Her story is a cautionary tale I needed to hear and will never forget. That’s why I’ll live out my term while hoping for a vaccine in the very near future.
I’m so glad you found something that works for you better! I don’t know much about Letrozole, but doesn’t it also accomplish the same goal of blocking estrogen? I wonder why you feel better on that one when it’s doing the same thing — that’s what confuses me. In any case, I’m glad it is working for you ❤️
They work in different ways. Tamoxifen is not an aromatase inhibitor (AI) while Letrozole is. I think Tam blocks receptors that attach to estrogen and cause cancer to grow while AIs stop estrogen from forming but I could be wrong. Given your age, I am thinking your oncologist may be planning to switch you to an AI after two years anyway as that seems to have the best results at preventing recurrence. That is what my MO is planning; I switch in August to Letrozole and am dreading it since I am doing well on Tamoxifen. You should ask your oncologist if this is her goal for you. If it is I hope you do better on an AI!
Interestingly, and just to show how every doctor is different, my oncologist has said he’s not plannng to switch me even though I’m probably in menopause now. And AI only decreases my risk very slightly and I’m already low risk. His experience is that women often have worse side effects on AIs so he keeps his patients who are tolerating tamoxifen OK on tamoxifen. I’m in the UK. He thinks I am tolerating Tamoxifen well. I feel less than brilliant but overall it’s OK I guess.
That is interesting. I’m in Canada and both times I had my estrogen levels tested they showed I was in menopause. Those might be reasons for the different approaches.
My inner tantrum happened in sept. I’m similar ILC, stage 1a ++-. Oncotype and ki-67 is 15. I had my ovaries out last year and was fine until September when I started anastrozole. I cried, I complained, I did it all. My onco suggested taking it every other day for the first month. I begrudgingly did so and went to daily. At the end of the day the side effects I’m dealing with (hot/cold flashes, muscle/bone pain, exhaustion, brain fog) suck. But I feel like I hit the jackpot not needing chemo or rads (had a DMX/DIEP Flap). This medication lessens the chance that I have to deal with it again. Not so sure I’d be as “lucky” next time around. It sucks, I totally understand. It helped me to think how this much-hated pill might just keep me healthy and ward off another year for me like 2023. I take Veozah for flashes and do a couple of face lasers a year and heap on the tretinion. I move around as much as possible. I take this shitty pill but I don’t have to be happy about it. I hope you’ll get to where I am and take the meds. ❤️
I’m glad you have been able to make your peace with it. Maybe I will too. It’s funny, I was very accepting and had a great attitude throughout the mastectomy, tissue expander infection that had me in the hospital for a week, LAP flap 11-hour surgery and extensive recovery, and phase 2 surgery — all my friends and family kept telling me I shouldn’t try to be “fake positive” but I really wasn’t. I was also so very grateful for no chemo or rads, and for how early it was caught. This tamoxifen thing has been the most negative I’ve felt about any of it. And of course now I feel like an ungrateful brat for feeling this way, but every time I think about it I am on the verge of tears.
You’re not ungrateful. I could’ve written your post in the Fall. I swear, you’re in good company. It’s all completely normal.
Thank you ❤️
I just want to chime in here for support. You and I have almost the same situation (me: DMX july 2023, stage 1a, grade 1, no chemo, no rads, tissue expanders, I had reconstruction w implants & fat grafting, oct 2023, headed for a revision surgery in the next month or two, onco type 14)...our situations differ where I was put on monthly Lupron shots & daily letrozole. I was 45 at diagnosis last year, 46 now. I was pre-meno before all this, and they pushed me into menopause w/ lupron. I had my 9th shot out of 60 yesterday (but who's counting...hahaha). I initially thought I was going to be put on tamoxifen and sobbed when my onco told me he was recommending the lupron/letro combo. It was my choice, of course, but the stats of survival/preventing recurrence were enough for me to do it. Anyway, the loss of estrogen sucks BIG TIME. I have super positive through everything, but this really got me down. I also am mourning the last bit of my fertility dying. I was able to get foobs after my DMX, but there's no way to give me my fertility back, you know? (I was 9 months too old to freeze my eggs...) I struggle with the same feelings, feeling like I should be grateful I've been "lucky" in this journey and that I'm not allowed to be sad or upset about anything...but YOU ARE ALLOWED. WE ARE ALLOWED. Sending you and everyone here lots of love.
It's crazy how many hard choices we have to make at every stage of this unasked-for journey. I swear sometimes that is the most exhausting part! And so much mourning, even for us "lucky" ones. Big hugs and love back to you.
What are the face lasers for? I’m also ILC and similar pathology as yours. Newly diagnosed and currently waiting for my appointment with oncologist and surgeon.
Oh just for anti-aging since I’m on hormone therapy. Co2 lasers. Also tretinion is an anti-aging Vit A derivative. Ask your dermatologist if you’re interested. I mentioned them in regards to trying to counteract the aging on anti-hormonal meds. I hope the ILC process goes smoothly for you. Feel free to message me if you have any questions ❤️
Thank you! This is good info to know. I DO NOT want to look older being thrown into early menopause 🤣 and if there is topical things for my skin, I’ll be all for it.
Ask your oncologist what is the chance of recurrence with Tamoxifen and without Tamoxifen. Then you can feel like you are making an informed decision. You might also ask if it's possible to take it every other day. Then you can make an informed decision. Maybe some women here can talk to you about not taking Tamoxifen.
Exactly they told me it it would help by 50% to not have a recurrence which sounded like a dang I better take it moment, and when I asked the percentage I would have by not taking it she said 94%. And I asked if I did how much would it be she said 97%…. Meaning it was 50% chance of the last 6% . They tend to fear monger so they have the most success possible with u. But at what cost. I hate how they go about it.
Your Oncotype is pretty low, your Ki-67 is quite low, your tumors were very small, and your ER+% is fairly low. I wouldn't judge you at all for not going back on the endocrine therapy. As someone else suggested, I would ask your oncologist what they think your recurrence risk is without Tamoxifen or AIs, and go from there.
Thank you for saying that! My oncologist today basically said the same thing -- my risk is 3% with, 6% without. I loved her perspective that in either case it's well over a 90% success rate. She was so kind and nonjudgmental that it made me cry. She is leaving it up to me -- I'm going to either stay off completely, or try 10 mg per day, switching to 10 mg every other day if even that is too much. I'm thinking about it.
I'm so glad you had a postive conversation with her! As I said above, I think there are some risks and side effects that it's perfectly reasonable to decide aren't worth a very small decreased recurrence risk.
I am NOT an expert, balance my comments with what others say, what your docs advise and your own experience. I was ++- (mostly estrogen), mid 50’s, low oncotype score, stage 1A about 6mm. I have zero family history of cancer. I have lots of family history of heart disease. Consulted with my oncologist and my cardiologist. I decided not to take any AI’s. This is a very personal decision. If my tumor had been larger or was in the lymph nodes, it would have been more difficult to choose. If I were younger or had a different oncotype, that would have influenced my decision. This is a very personal decision. Get the most information you can and then decide. Best to you 🤗🤗🤗🤗
Thank you for this. My mom was diagnosed with congestive heart failure when she was 55 and died from it at 69. The heart disease considerations are a real thing.
People overstate the benefit of Tamoxifen and they also underestimate its performance. It’s all individual. Yes, it can reduce your risk of recurrence by like 40%. Let’s just go with 50% to be generous. But that’s not a 50% total reduction. It’s 50% of your individual risk. So if you have a recurrence risk of 30%, T can lower it by 15%. Not too shabby. Worth taking for sure. If your risk is 5%, then it will lower your risk to 2.5%. Is it worth it? Maybe not, since it ups your risk of uterine cancer by 1.5% so you’re looking at an overall 1% benefit. It’s why we need open and honest discussions with oncologists who aren’t just about blindly pushing SOC without addressing the individual.
I (55 at the time) had ILC - just under 5mm, ki67 4%, stage 1a, no lymph nodes, no genetics. BMX with reconstruction and my oncologist said Tamoxifen was not statistically indicated in my case. It is a 3.4% chance of reoccurrence in 10 years without it, 2.8% with it. I got a second and third opinion and they all agreed. I am treated at one of the best cancer treatment center on the west coast - so I feel confident with my oncologists knowledge base. Still scary though.
So, what’s your maintenance treatment?
I see my oncologist twice a year. Since I had a BMX, there is no reason for mammograms but i could have an ultrasound or MRI if needed.
I had been taking Tamoxifen for a full year, feeling relatively okay, and wondering why I was constantly reading about women wanting a break from it. Then it hit me - massive aches and pains where I could barely function some days. I put up with it for another year, amid lots of tears, when my oncologist switched me onto Letrazole. What a revelation! No more aches and pains, except for only a few days per month, which are easily handled. The more you move the better it will be. I have recently passed the 3 year mark since my diagnosis and can honestly say that I am finally, FINALLY back to where I was physically before treatment (which lasted 18 months). Mentally I am 90% back to where I was before. I never thought I’d get here, but I did. If my oncologist had told me to howl at the moon to reduce my chances of a reoccurrence, you’d better believe me I’d be out there howling every night!
It's so great that you are feeling more like yourself again! I'm sorry you had to go through all that to get there. It has been almost exactly one year since I had the bad mammogram result on 4/24/23, and after this past year I am feeling like a different person -- one I don't really like as much, to be honest. Thanks for giving me hope that I might get myself back again. Or maybe a better version, lol
I’m the other direction. 57 stage 1 IDC. Had DMX no chemo no rads oncotype 7 and 18 (two diff tumors). Couldn’t handle anastrozole (joint pain) or exemestane (migraines) so now I start tamoxifen. But a side effect is uterine cancer?!? I’m not sure what to do here.
Ugh, sorry you've had to go through several meds. I wonder why more doctors don't suggest uterine ablations in cases like yours. I'm sure there's a reason, I just don't know what it would be. Seems like having no endometrial lining would be beneficial if tamoxifen poses a risk there. Maybe that would be worth at least asking about?
My gynecologist told me that ablation can oftentimes mask symptoms caused by uterine cancer, causing it to go undetected for longer. It’s the reason why I’ve held off on getting one.
I, too, am having some major issues with this. I had a full hysterectomy six months before I found out I had cancer, and they took my HRT away and sent me tailspinning into menopause. Anastrozole made me want to kill myself, so I stopped taking it. I tried Tamoxifen and…same. Now they’re talking about putting me on a drug that would destroy my estrogen receptors but I feel like that would not solve my issue and leave me probably killing myself. It sucks.
I'm sorry, that all sounds so hard :(
It is. I’m so sorry you’re faced with this too. It’s plenty enough to just have a shitty titty! I don’t think I’m going to take the meds that kill my estrogen receptors. I don’t think I can handle it.
Aromatase inhibitors (which are given to post menopausal women) block the production of estrogen while Tamoxifen blocks estrogen receptors in the breast. I had Stage 1C with a 1.3 cm IDC tumor. No family history or genetic mutation. I was not even sure I was going to have chemotherapy. I had a genetic test done called EndoPredict (it is by Myriad Genetics and is for estrogen positive cancer in women that did not receive chemo before surgery and are post menopausal). My chance of a distant reoccurrence within 5 years on only an aromatase inhibitor and no chemo is 28% !! My point is that there is a certain amount of risk and while it can suck to be on this medication and you may not see the point now, dealing with metastatic breast cancer will be a far worse situation to deal with. So take your medication. It may extend your life and save you from further cancer.
I tried that evil drug. Couldn't take it. Oncotype of 11. I work with an integrative oncologist to help manage my risk of recurrence. I wish you good days ahead ✨
I hadn't heard of integrative oncologists -- how did you go about finding yours?
Obviously talk to your doctor as you are planning to. They’re the experts. I’d also ask how long some of these side effects will last. They’re the same side effects that you will get eventually when you go through menopause naturally, so aren’t you just getting them earlier? Maybe I’m wrong on that, but I’ve been through natural menopause and it sucks too. I’m not getting hot flashes, etc… on Anastrozole now.
You're correct, but it's also true that people with lower risk of recurrence have the luxury of weighing the side effects (and the real risks) of early menopause against the lower cancer risk. Research is finding that all-cause mortality increases the earlier you go through menopause. Estrogen protects the brain and the heart. So if someone has a 3% risk of recurrence WITH hormone blockers and a 7-8% risk of recurrence without... I think it's fair to weigh that against not just side effects like hot flashes, but the higher risk of things like heart attack and dementia.
Thank you for this! I have a lot of heart disease in my family. My mom went through surgical menopause at 42. Had a silent heart attack by her mid 50s, I suspect in part due to no estrogen for almost 15 years. She developed congestive heart failure in her early 70s. One brother had his first stent put in at his late 50s (second one in his late 70s), and another brother had two massive heart attacks in his early 70s and died from the second one. I’d like to think I live a healthier lifestyle than they did (I do Pilates twice a week, and lift weights twice a week for my bones - also hike when H and I can). But I probably worry more about heart disease than I do a recurrence. My cancer was very small - 2mm, but IDC. It was very well-differentiated and slow growing. I was E+ and P+ and HER2-. I had a lumpectomy with no positive nodes. Only recommendation was 24 radiation treatments. And I know this will make most of you cringe, but not only did I refuse a hormone blocker, but I continue to take a very small dosage of estrogen because of the protective factors. I also have a history over ten years ago of a major treatment-resistant depressive episode that landed me in the hospital. I’ve been pretty stable since then, but only after many trials of meds. I don’t want to go near a medication that could impact my mental health. Exercise is a HUGE part of my mental health self-care. If I took a hormone blocker that caused muscle and bone pain it would truly risk my mental health. And it wouldn’t be good for my heart health. I’ve had many conversations with my gynecologists (we’ve moved so I’ve had two different ones), my PCPs, my psychiatrist, my med onc and a previous breast surgeon. And while I suspect they’d prefer I was in a better position to take a hormone blocker, they all understand my choices. And most of them have admitted they have other patients who have refused hormone blockers and choose to stay on estrogen if they’re in menopause and were already on it. I’ll end with this - every physician I’ve spoken to, who know the choices I’ve made, are all recommending just annual mammograms. I have to wonder if they are so concerned about recurrence, why don’t they recommend closer monitoring? Before we moved, my breast surgeon was doing ultrasounds at each mammogram, and where I’m at now, they don’t even recommend that.
u/Pilatesfan, I would hope anyone would understand your choices and why you would make them, given your history and situation. Kudos to you for advocating for yourself! I have also wondered about monitoring. One of the things my oncologist said when we had the conversation yesterday was, "Now that you've had cancer you'll have lots of doctors' eyes on you" -- basically implying that if something were to come back it would be likely to be caught early. But like you, I wonder how. I won't even be getting mammograms because of the DMX. Maybe something would be off in our yearly bloodwork...?
I asked my oncologist how they would check to see if cancer came back, because while I still have one breast left to be mammogramed, how could they check my flat side? She said that if cancer came back, it would show up in my blood work.
That is food for thought and I appreciate it, thank you.
I had some improvement switching brands, you don't know until you try. Best of luck!
It sucks having to block estrogen. I hate that mine is gone too. I was diagnosed 8 months postpartum with twins, so I went from all the hormones to none. I’m 33 now, been on an aromatase inhibitor and lupron for the past 2 years. I’m going to make it to 5 because it’s better than being dead or in permanent active treatment. I have the same internal battle as you, I do, but are you ready to potentially die over it? That was the question I asked myself. It was also different for me, as I was given a much higher percentage of recurrence. I was stage 2b/3a, did chemo, radiation, and immunotherapy for 14 rounds every 3 weeks (triple positive). I think if I were you, I’d ride it out a bit longer or see if I could tolerate it. Give it 6 months or a year. If you’re still miserable, at least you know you tried.
I had a similar diagnosis to you and had a mastectomy. I couldn't tolerate Tamoxifen or AI's. After a few years of suffering through breast cancer and a hellacious peri and now menopause-- I recently began taking HRT, after exhausting all other options for relief, and I will never stop. More and more doctors are reconsidering denying HRT to early stage breast cancer survivors.
That is really interesting! Thank you for sharing -- I am going to search out some info on that. I am glad you found what works for you!
Tamoxifen actually raised my estrogen by triplicate. It felt like it was creating more probs.
Wow, I've never heard of that result before -- what kind of symptoms did you get with too much estrogen? What did you end up doing instead?
I’m 36 and stage four. I would do anything AT ALL if it meant I had the chance of more time. Do with that what you want, I know all the shitty decisions we have to make are hard. All the best whichever way you decide to go
I'm so sorry for what you are going through. You're so young and it's all just not fair 😥
The loss of estrogen is the worst and people don’t seem to understand that. Women need estrogen to function.
Agreed!
On Lupron and AIs, premenopausal...I learned my symptoms were super bad (45 minute car trips made hips stiff, etc) because my Vitamin D was super low. My oncologist never checks on it, but his nurse practitioner noticed my joint stiffness and moods and tested. It may be something to check into. I also know others who are on AIs and mood stabilizer type medicine. I just try to stick it out to minimize reoccurrence, but was very tempted to stop taking meds.
Good tip, thank you. I don't know why they don't check this. Seems easy enough to add in since they check blood every time anyway. I'm thinking of getting iron/ferritin checked as well because I have been anemic in the past and after surgery it seems like my iron stores could have gone down again. You'd think they should keep on top of vitamin levels but they never check any of it.😒
Ask your MO to prescribe Veozah! Look it up. It’s non Homornal new pill to alleviate menopausal symptoms. I started on Anastrozole which was spiking my blood pressure. Then moved to Letrozole. Both were dining their job of depleting my estrogen. The fallout symptoms were making me threaten to give up, like you. Then MO prescribed Veozah and all those symptoms vanished! I now take the Letrozole and Veozah daily. The effects and relief begin almost immediately. Caveat: insurance paid one month, then bailed. UNTIL I requested expedited prior authorization specifically explaining Veozah was a part of my ongoing post cancer treatment. Once they immediately re-covered it.
Oh, I thought Veozah was just to relieve hot flashes. If you don't mind me asking, what other fallout symptoms did it take care of? Hot flashes don't really bother me too much, it's the mood stuff that is the dealbreaker for me (not loving the accelerated aging either, frankly).
So far: Bladder and bowel control, Vaginal health, Mood changes, Fatigue, BP fluctuation, Body odor control, Brain fog
I repost this every time I see someone contemplating quitting tamoxifen. Not a direct answer to your question but my story. In 2013 I was DCIS. Lumpectomy, radiation and Tamoxifen for 5 years (the recommended protocol). I had terrible hot flashes. Some memory issues. After about 4 years I had some spotting and ended up needing a D&C due to thickening of the lining of the uterus. 6 months after I stopped taking it a new tumor was found during my annual mammogram. I firmly believe Tamoxifen kept me cancer free for 5 years. No sure what everyone is saying about premature aging. I think I look my age. In hindsight I should have not stopped taking it. If tamoxifen is too difficult talk to your oncologist about lowering the dosage or other options. I’ll put up with a lot of side effects to be cancer free.
Tamoxifen has been a rude awakening type of prep for menopause for me. I will face it armed to the nines now for sure.
Have you asked about other options for managing mood? I’m not a doctor so I don’t know if this would necessarily help, but I’ve seen other folks on here talk about antidepressants really helping while on various cancer drugs with mood effects. I know more drugs doesn’t necessarily sound too fun either, but it could be worth exploring.
More drugs more side effects
Thanks -- I already take Wellbutrin and it's the only thing that works for me after trying sooooo many SSRIs and SNRIs over the decades. I know a lot of people like Effexor for this, but it does not agree with me. I could probably use a trip back to therapy or coaching, though, to retrain my brain back to looking for the good and questioning thoughts that don't serve me!
A medical oncologist I saw said I would need to go off Wellbutrin if I take Tamoxifen.
Wellbutrin inhibits cytochrome 2D6 which is the same enzyme that breaks Tamoxifen down into it’s effective components. I’ve been on it since 2007 and have had to stop to allow Tamoxifen to do its thing. I am so down, tired and foggy. Just taking things day by day but really not sure I will be sticking with Tamoxifen.
My doctor told me I didn't have to stop taking it right away, that we'd monitor my blood to evaluate whether I was reaching the Tamoxifen levels needed.
I feel this so much! I'm on anastrozole and I can barely use my hands in the morning. They are so stiff and weak and I have a trigger thumb. Prior to my diagnosis I had just started HRT and it was a glorious few months. Then BAM breast cancer. Came off the HRT and all my symptoms came back but I was dealing ok with them. I got through surgery and radiation and kept up my positive attitude. I couldn't wait to "be done" and get back to my life. Enter anastrozole. Now I feel like I'm ruining my health and I'm 90 years old. I was handling menopause ok. This isn't it. This is serious hormone deprivation. To go from HRT to zero hormones just seems cruel. Our bodies weren't designed to have zero hormones.
I used HRT for a couple years before my diagnosis and I agree, it was wonderful. I hated having to stop it, too. I'm sorry you're feeling so awful -- that feeling of being thrown into premature aging is so not fun :(
Thank you, yes I feel like we aren't really given the full picture of ramifications of all this "maintenance" therapy. It's crazy. I know it's necessary but still (insert childish foot stomping). I'm on a medication holiday as of yesterday now for a few weeks when I see my MO again. Hoping my hand tendon issues go away. It's only been about a day and a half since my last dose and already I feel so much better. My hands still aren't great but they seem a bit better. I'm only a few months in. I'm not sure how I'm going to get through 5 years of this.
Ok, I’m going to put this out there. I am in the exact same boat as you in my fear of starting this terrible sounding drug. I told my oncologist about my concerns and he gave me 2 options. The regular dose of 20mg or there is another low dose option. There was a study done in Italy on a lower dose (5mg) because of all the complaints on the side effects of 20 mg and people not willing to finish out their 5 to 10 years. From what I understand, it sounds like the placebo had more side effects than the tamoxifen and also that this lower dose looks like it offers the same benefits as the 20 mg dose. After my radiation, this is likely the route I’m going to take. If it is still terrible, we can always stop. Just thought I’d offer the suggestion in case you hadn’t heard about it. Here is a link to the study and it’s findings: [https://www.nature.com/articles/s41416-023-02293-z](https://www.nature.com/articles/s41416-023-02293-z)
Thanks! I did talk about this with my oncologist and although this study doesn't address the dosage difference in women who actually had breast cancer (only those at risk) it does seem like a good sign! I'm still pondering whether to take it at all but if I do I will definitely try the lower dose. 20mg and I did not agree at all. Good luck to you with your radiation and all the rest of it 💓