Tamoxifen: start or no?
Hi
After meeting with my MO yesterday and we agree to stop Lupron as the emotional side effects are just not doing well with me. I am premenopausal, age 47, and Oncology score is 22. My risk of distance occurrence in 9 years was 13%, with tamoxifen it would reduce to 8% and if using ovarian suppression or chemo, it would further reduce the risk to about 1-2%. I have rejected ovarian suppression/chemo, so I am now at a risk of 13% unless I start Tamoxifen. I am hesitant to do so base on the risk on what Tamoxifen could bring at the standard dose of 20mg. There have been other articles on 10 mg and the release of the results from the 10 yr clinical trial on the TAM-01 trial, which was alluding to a 5 mg (baby tam). Both lower doses could reduce the risk of getting endometrial cancer and other SE, I believe. With that said, should I push for the lower dose of 10 mg or start with the 20 and see where that goes? After the impact of SE from lupron, just getting very hesitant on starting these drugs. I think tamoxifen is the only recommendations for premenopausal women? If there are other alternatives, please do share. I mean if it gets as bad as what lupron was, I dont want to but may just take my chances on the full 13%.
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I didn't tolerate tamoxifen and my doctor approved toremifene for me. It's used for prevention of recurrence for premenopausal women in Asia and Europe, as far as I know. My side effect profile was way better.
But before trying that, I tried several different generic brands of tamoxifen - for some women, one brand will be great, and another will be terrible.
(But I did get a new cancer on the other side, so now I'm off it and trying OS/AI and really really really hoping I can tolerate it. I am about to start my 3rd month of ovarian suppression and took my first anastrazole last night, and have been having hot flashes every hour and a half. Ugh).
I think most doctors will feel obligated to advise you to do 20mg since that's the evidence-supported standard of care (for now). Some doctors may be more willing to work with you on titrating up, and some may want you to start with the regular dose and then play with it if needed. But I hope that your doctor will at least be willing to have that conversation with you.
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Granted, I only had DCIS, but I'm in my early 40s and really wanted to do baby tam at 5mg, yet agreed to go with 10mg. It's very tolerable for me with the side effects mild enough that I'll stick with the 5 years (I'm a little over 2 years in).
It's the compromise I feel comfortable with. I'm still doing something that has been proven to reduce my risk but also keeping my quality of life. My thinking is that 10mg isn't going to make a real difference. If I have a recurrence on 10, I feel like I would have still had a recurrence on the full 20. It's a crap shoot and you never will know what would happen if you did something different, so go with what feels right to you.
I'd say to talk to your doctor and start with 10mg and see how it goes. Either stop completely, stay at 10 or go for 20. I think mine felt that I would say no to 20 (I would have), so 10 was better than nothing.
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Thank you both. I message my MO on Friday and he told me to just start the 20 mg. I started on Monday and I dont know how but I "felt" some SE within hours. One was confirmed by nurse on the phone as brain fog. I had heart palpitations even though heart rate and blood pressure was ok. And I can feel the anxiety creeping up. Was not good.
The nurse relay my message to MO and he send in a prescription for 10 mg. I will start that tomorrow. Fingers crossed on the 10 mg. If that still bad, I wonder will my MO be ok with me doing baby Tam.
I mean its better than nothing if it reaches to that point. To me, the oncology DX score is based on the tumor that we had at that point in time. I believe the rate of recurrence was based on the results of the participants of a study. So that to me, it's all about probabilities and statistics to factor in our risk percent base on the tumor score and our age (not about menopausal or premenopausal), which in itself is not an absolute. Here goes tomorrow on 10 mg…..wish me luck 😐️. If the 10 mg is bad and doc wont ok 5 MG, then next up, research chinese herbal medicine….found this when doing my usual Google…
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6536969/
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Hi @schlip, and welcome to the community! Thank you so much for sharing your story and decision-making process with us. We're sure your insights will be appreciated by others facing similar decisions.
Please let us know if we can help in any way, and thank you again for enriching our community!
The Mods
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I wish you so much luck in this. I will say though that my oncotype was 23 and when they quoted my recurrence rate it included the use of tamoxifen. It's automatically assumed according to my oncologist. The rate reduction with it comes from the use of chemo. So to get it at 13%, I think you would need to take tamoxifen. Otherwise it's higher. For instance mine was 14%, I decided to do chemo which knocked off 6.5% from it and then I use an AI instead of tamoxifen which probably knocks another 1 to 2% off. I also exercise everyday to get another 40 to 60% in reduction.
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Hi kaynotrealname
Mine was actually 8% listed with tamoxifen on the 9 yr recurrence and 1% if I did chemo. The chemo was an additional 6.1% reduction. And tamoxifen, according to another trial, reduces 50% chance of recurrence so my risk rate could have been higher than 13 … maybe more along the 16%-20%. So yes not as low as I would have thought or like it to be but still a risk no matter what that number is….vetting…
I lost about 40/54 lbs in 2018 and been good on keeping it off. Since the start of the pandemic, I have not been doing good at maintaining an exercise routine as I used to Earlier this month, I had erratic blood pressure (most likely related to lupron), I have started exercising more routinely again. This forced me to be "good" again, in which case I lost 5 lbs so far. Eating healthier also, adding more fiber and blueberries into my diet. I also added Omega 3 fish oil to my vitamin routine. Doing what I can naturally to reduce this "risk" for BC and other health issues. So took my 10 mg today, lets see how my day goes…
I wish there was a drug that only does what it needs to do without impacting other parts of our health. I get its not possible currently, but I rather deal with SEs naturally as they come. However if the SEs are bad and MO or doctors are giving me more pills to reduce the SE impact, then to me, its now a mute point. Why put a band aid on top of a band aid and so on. I have not been on any medication until BC. Only been on vitamins. Today I have tamoxifen, lupron and blood pressure medication my body, and I am at risk to experience or experienced already, any and all of their side effects….venting….
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I know. I wasn't on any drugs either but I've got my share of them now and I assume it will only get worse as I continue aging. I don't know what the answer is beyond we keep doing the best we can. As far as alternatives to tamoxifen, I'm on letrozole and lupron. No cancer risk with it but the side effects for some people can be intense. I don't have any though so I'm grateful. It might be that you need to try a few to see if one works better for you than another.
Oh and the statistics you quoted for oncotype are post menopausal statistics. I don't know if you were post or pre at diagnosis but there is an adjustment your oncologist has to manually do for you if you were pre. Oncotype doesn't automatically make that adjustment and just assumes everyone is post menopausal when giving you your recurrence score.
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Hi all! Just dropping in to share this article with you, in the hopes it helps:
—The Mods
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Hi kaynotrealname
Did not know that. I would ask about that next time I go see the MO. Think it may be sooner than the 3 month checkup cause I am not so sure I can do this for 5 years. My bottom line on tolerating SE are the lost of control of my "brain/head", and my heart. If I cant control my mind, emotions, my "head", then I can't function in my day-to-day and that is a no no. My heart, that blood pressure and emergency room visit, was not a good memory as it tells me how fragile the heart is and its impact to me. Physical attributes like hot flashes, pain, those are not that bad for me. For me, those type of SE are doable and manageable.
Thank you Mods. This is a good article, but also to quote from Dr Kassem's comment in the article "How can we minimize the toxicity and maximize the benefits of hormonal therapy?". There is no research to show what is the least amount of tamoxifen to take for invasive breast cancer and still be able to benefit from it. So for most of us, we are taking the 20 mg or the 10 mg. For me, the 20 mg was not good. The 10 mg, its only been 6 hours since I took it and yeah feeling some SE trying to set in. Feel an onset of some dizziness (hoping it wont become full on and it dissipates), the brain fog/numbness returning, and some fatigue coming on. I hope I am going to feel OK enough to get to my radiation checkup tomorrow.
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I am so sorry, Zen. We all have to weigh risks versus rewards and I wish you the best in making your decision.
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Just a quick update, MO asked that I take a 2 week hiatus from Tamoxifen as he felt that the 20 mg is still in my system causing these issues. He wants to wait until 2 wks after and then start on the 10 mg. It's been almost a week off the tamoxifen and I am still feel something. Could be tamoxifen or the withdrawal symptoms of tamoxifen or the lupron withdrawal? No idea but I am still not myself.
Yesterday had another anxiety episode where I am just going to my eye doctors, and lasted about 3 hours and trigger high BP. I dont think endocrine therapy works for me.
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Last update on this thread, thought I should close it up. I have messaged my Oncologist that I will not be doing Tamoxifen. I have an appointment to see him in 2 weeks to discuss further.
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I'm so sorry, Zen. I wish you the best of luck at your next appointment.
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I have not had experience on Lupron or Tamoxifen, but I did have several side effects on Zoladex and Letrozole. To say my side effects were brutal would be an understatement in my mind. After several requests to get the meds changed, I had zero luck. Finally, after months of complaints, I was switched to Zoladex and Exemestane. At the start, I had hot flashes and joint pain on the Exemestane. Eventually, the hot flashes subsided completely. It took a few more months of complaints and scans, but it finally worked out. Now, I am on medication to help bone absorption which has helped tremendously for the joint aches and bone pain. And my SEs are now minimal, if any.
The OS & AI was another unknown and unwelcome process, but it eventually worked itself out. It was trial and error over what I would have preferred not to experience, but I did get good results over time. The process helped to educate me, and now, I know every little discomfort is not more cancer.
If you choose preventative medicine, finding the right one that works for you could take a while. Even if you find a good one for yourself, it could take time for your body to adjust to it.
Be patient with yourself if you can. You may or may not find something that works. It is your decision what you choose to do for treatments.Whichever you choose is best for you, I wish you the best moving forward.
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Thank you both for your comments. I agree that its a trial and error to see what works for me. I think endocrine therapy and I dont like each other a LOT …😂. I recently found a website called global-cures.org, and their purpose is to look for "repurposing" existing drugs for cancer. There are other alternatives out there but as they have not been vetted thru clinical trials, they were not part of our current cancer treatment protocol. Reason for that is the lack of funding and the possible lack of future revenue for drug companies. One such trial is currently underway in UK on using aspirin as prevention. UK also having a trial to use Galleri as part of a screening tool for cancer. There are also other countries going thru their own internal trials on usage of ancient herbs or diet as a adjuvant to chemo treatment or as part of cancer prevention, like natto or honey (like Tualang honey). I am not saying this is the route I will be taking but these options have less impact to our existing well functioning organs than these pills. Why there is no funding to see their impact to cancer? If they work, this will help alleviate a lot on health care costs across the board and across the globe.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10045300/
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Is ovary removal an option for you? I had the worst side effects on tamoxifen. I had my ovaries removed during my reconstruction surgery and I am now effectively in menopause naturally (ish). My menopausal side effects are much much less. Leg cramps making me howl in the middle of the night, tons of hot flashes and mood swings, low libido- All a whole lot better than when I was taking tamoxifen.
I realize this is not the right choice for everyone but just wanted to share my experience. Now I’m in AI only.
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Hi @lorelid, and welcome to the community! Thanks for sharing your experience with us. It's great to hear how you've found relief from some of the side effects by exploring different options. This is always helpful for others going through similar situations.
If there's anything you need or if you want to share more, please don't hesitate to reach out. Whenever you need us, we're here for you!
Sincerely,
The Mods
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Hi lorelid
That is an option that I am exploring, ovary removal and/or chemo. I did have a lupron injection for a medically induced menopause. That was the foundation of my dislike for endocrine therapy. Tamoxlin, for me, magnify the side effects that I was having with lupron. I am hesitant on the ovary removal cause of the effects I had on lupron. I am still feeling these lupron side effect but less as I think it is working itself out of my system, but wont know until I have my period again. I will be seeing my oncologist later on this week to see what other options he has.
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Hi new to the community, 50 years old, 56% lifetime risk. I asked BS about Ovary removal or even hysterectomy to skip taking tamoxifen because of all the side effects. BS said it will help but that will not stop my body making estrogen. My hormones show very low Estrogen, FSH 202. Anyone with regrets about not starting to take tamoxifen?
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Hello, @hummingbirdz, and welcome to the community! We're glad you found us. We understand concerns about starting tamoxifen, but remember, every patient is different, and individual experiences can vary widely. We hope you get responses from other members here soon. In the meantime, there's also a popular thread called Bottle O' Tamoxifen where many members have shared their experiences, tips, and advice about taking this drug. It might be helpful to check it out and see how others have managed the side effects and made their decisions.
Hope this helps! Looking forward to hearing more from you soon.
The Mods
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You can google Shannen Doherty. I think she has some regrets since she refused to take tamoxifen and then progressed to a stage 4 diagnosis. But it's totally individual for each person. Some people have side effects but most don't at least that they can tell. The internet is not a good gauge for determining that percentage since rightly so you're going to hear more from people who struggle than don't. But for instance I don't have any perceptible side effects and I'm on letrozole with my ovaries gone.
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Kay brings up , for me, a question that is the bottom line for anyone considering not taking tamoxifen or an AI. Will you regret it or feel bad if you recur? A local recurrence is one thing, but a metastatic recurrence puts one in a whole different ball game. Nothing in life is guaranteed and we all take risks at times. Each of us has to decide how much risk we can accept.
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Exbrnxgrl- how is your experience with Aromasin? I'm on lupron a d kadsyla, about to start aromasin. I'm nervous to take it.
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You might want to join and read up on the Life on Aromasin thread for real-life patient experiences:
Also, our content on Aromasin might be helpful:
You're sure to see that most tolerate Aromasin pretty well, and if you have any untolerable side effects, you could switch to another Aromatase Inhibitor (there are three), that has less side effects. You can read about Aromatase Inhibitors here:
We hope this helps! Please let us know if there's more we can do to help!
—The Mods
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Just had an appointment with my MO today and he stressing that I should start Tamoxifen as it looks like lupron is leaving my system SLOWLY as labs are saying I am no longer in menopause. I know I should give this a try but I am finally at a nice "break". Been feeling OK, more normal, so hesitant in adding in something that could really 'rock the boat'. For those that have taken it or on it, do you have any advise on how to intro this into the body? MO ok with me being on 5 mg but he wont agree to a 2.5 mg (as there is no way to get 2.5 mg unless you split the 10 mg to half and then half 😶).
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Sorry that I never answered the question on Aromasin. I have been off it since November 2023. Since I was on one AI or another for 12 years, they all affected me in the same way, which I tolerated. Can’t say I miss it!
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Why for 12 years? Did you have any side effects from it? I'm about to start 5 years today…I'm nervous my hair will fall out again and my body will hurt even more.
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I am stage IV.
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On my other thread, detailing my journey with Lupron, which has finally come to an end as it finally worked itself out of my body. I think I will use this one to detail tamoxifen, should I choose to take this. I am trying to get a new oncologist as my current one is not connecting with me or even willing to listen to me on my concerns. He does not get what Lupron have done to my mental state and how I am not mentally ready and mentally scared of what these drugs can do to me now. Yet I know the science behind this drug and how, as I am premenopausal, this is really my only option as I cant tolerate ovarian suppression. I want to give what I can my all, so at least I know I tried. Going to think this thru as my period finally is going thru my body.
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