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LCIS: should I take Tamoxifen?

Posted by nycoceans @nycoceans, Jan 5, 2020

LCIS diagnosis May 2017 followed immediately by lumpectomy. Since then go to Sloan Kettering 2x/year (mammo in Dec and June ultrasound). So far so good. Can’t decide if Tamoxifen is worth it - I do long (6+ hours) flights every three months so worry about blood clots and other side effects. And definitely worry about ten year outlook - docs tell me LCIS can mean cancer takes a long time to show up but if it’s lobular it’s harder to treat. Frustrating that so little known about LCIS. Thoughts on taking Tamoxifen? Anyone with an LCIS diagnosis more than five years ago? Thanks

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lisman1408 | @lisman1408 | Jan 30, 2023

Cancer sucks! The disease itself is dreadful; and then we get to take medication that has dreadful side effects! Life is hard, but it’s better than the alternative…. Unfortunately there isn’t a cure yet and our only alternatives are medications with unpleasant side effects. In reality though, even with unpleasant side effects, these drugs are better than recurrence of breast cancer. There are many other diseases and difficulties that people must face.
I don’t know anybody who doesn’t have hard challenges. Thank you to everybody on this site for supporting one another!

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mayo101 | @mayo101 | Jan 30, 2023
In reply to @colleenyoung "Hi @mayo101, I moved your question about taking tamoxifen after preventative double mastectomy for LCIS to..." + (show)
@colleenyoung

Hi @mayo101, I moved your question about taking tamoxifen after preventative double mastectomy for LCIS to this existing discussion:

– LCIS: should I take Tamoxifen? https://connect.mayoclinic.org/discussion/lcis-should-i-take-tamoxifen/

I did this to connect you with other members who also faced this decision like @nycoceans @cindylb @sparklegram @betsyk @batm @lisman1408 and others.

This is a great companion discussion to the earlier, related discussion you started here to help you decide on mastectomy:
- LCIS what treatments did you choose? https://connect.mayoclinic.org/discussion/lcis-and-double-mastectomy/

Keep in mind that everyone reacts differently and not everyone has side effects. Are you concerned about potential side effects? If I recall, you are in your early 50s. Does your oncologist feel that because of your age, tamoxifen reduces your risk of recurrence?

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I actually don’t get to see an oncologist. I am being followed by a oncologic surgeon who feels that after a double mastectomy for LCIS, the risks of tamoxifen is greater than the benefits. But the oncology Nurse Practitioner who I was finally given to see in the oncology department suggested tamoxifen at low dose as an extra layer of protection.

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windsurfer7 | @windsurfer7 | Apr 9, 2023
In reply to @cindylb "I take Vitamin D (i was found to be extremely deficient when diagnosed with LCIS and..." + (show)
@cindylb

I take Vitamin D (i was found to be extremely deficient when diagnosed with LCIS and that 'can' be a risk for breast cancer), I also take iron because for some reason I'm slightly anemic as well. I only take it 2-3 times a week as it can be 'too much of a good thing' they said. I also take Omega Chews and have been for years for heart health and dry eye, a multivitamin chew that includes minerals as well as the standard vitamin regimine, biotine (my hair and nails took a real hit in menopause) and grapeseed extract (oddly for tinitus...and it works!!). I take no other prescription drugs or supplements although I do use tumeric in my cooking to fight inflammation and I try to watch both sugar and salt closely. I really modified my diet after the LCIS diagnosis but should do better. I did lose 27 pounds over the course of my breast cancer 'adventure', which was a good thing. I vary about 5 pounds when I don't really watch my diet. You want to reduce fat because hormones are produced to some extent after menopause in your fat. I don't eat or use soy but I avoid it as much as possible (again some estrogen production). Oddly, my cancer was strongly estrogen positive. I never had much progesterone, hence lots of problems I'm just now sorting out. I now have virtually no estrogen, no progesterone and little testosterone (I have the levels checked). I'm pretty much drying up from the inside out, ha ha!! The low hormone levels have caused many symptoms similar to taking the AI drugs (I can't, bad reactions to all). Not as bad as the meds but dry skin, hair, nails, some joint pain is starting to appear, dry eyes, vaginal atrophy, etc. I just patch, patch, patch...but it's better than cancer!

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Hi! Are you finding good patches? These are my concerns as I will probably take tamoxifen in the future since my cancer was highly hormone related. I have a few months to 50 and was not yet menopausal, but just started chemo, and then will likely start hormone blockers after that. Not excited about all the possible issues due to eliminating estrogen. But, like you said, preferred over cancer. Thank you for sharing.

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1 reply
cindylb | @cindylb | Apr 9, 2023
In reply to @windsurfer7 "Hi! Are you finding good patches? These are my concerns as I will probably take tamoxifen..." + (show)
@windsurfer7

Hi! Are you finding good patches? These are my concerns as I will probably take tamoxifen in the future since my cancer was highly hormone related. I have a few months to 50 and was not yet menopausal, but just started chemo, and then will likely start hormone blockers after that. Not excited about all the possible issues due to eliminating estrogen. But, like you said, preferred over cancer. Thank you for sharing.

Jump to this post

I was never able to take the hormone blocking drugs (tried 'em all) but I was post menopausal at the time of my bi lateral mastectomy and I do think that's a strong factor. I am close to 8 years from my surgery and no recurrence of cancer!! Very grateful. I will say that many of the drug side effects have happened over time anyway, gradually (joint pain, vaginal atrophy, hair loss, skin changes, etc). I guess those horrible maladies are inevitable? I spend a lot of my day patching up those conditions (sigh). I was also very lucky my cancer was Stage 1 when I found it the second time...so no chemo or radiation. It's a tough decision and a long road, but hang in there and take good care...........HUGS to you.

REPLY
sue417 | @sue417 | Jan 8 6:31pm
In reply to @cindylb "I take Vitamin D (i was found to be extremely deficient when diagnosed with LCIS and..." + (show)
@cindylb

I take Vitamin D (i was found to be extremely deficient when diagnosed with LCIS and that 'can' be a risk for breast cancer), I also take iron because for some reason I'm slightly anemic as well. I only take it 2-3 times a week as it can be 'too much of a good thing' they said. I also take Omega Chews and have been for years for heart health and dry eye, a multivitamin chew that includes minerals as well as the standard vitamin regimine, biotine (my hair and nails took a real hit in menopause) and grapeseed extract (oddly for tinitus...and it works!!). I take no other prescription drugs or supplements although I do use tumeric in my cooking to fight inflammation and I try to watch both sugar and salt closely. I really modified my diet after the LCIS diagnosis but should do better. I did lose 27 pounds over the course of my breast cancer 'adventure', which was a good thing. I vary about 5 pounds when I don't really watch my diet. You want to reduce fat because hormones are produced to some extent after menopause in your fat. I don't eat or use soy but I avoid it as much as possible (again some estrogen production). Oddly, my cancer was strongly estrogen positive. I never had much progesterone, hence lots of problems I'm just now sorting out. I now have virtually no estrogen, no progesterone and little testosterone (I have the levels checked). I'm pretty much drying up from the inside out, ha ha!! The low hormone levels have caused many symptoms similar to taking the AI drugs (I can't, bad reactions to all). Not as bad as the meds but dry skin, hair, nails, some joint pain is starting to appear, dry eyes, vaginal atrophy, etc. I just patch, patch, patch...but it's better than cancer!

Jump to this post

Hi
I would like to know more about grapeseed extract for tinnitis. As I have that also

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