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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@sparklegram

Does anyone else who is taking Tamoxifen have loss of appetite as a side effect? What are some of your other side effects?

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My worst side effect is hot flashes, throughout the day and night. I lost my appetite during radiation (Sept 2018), did not regain it while on Arimedex for a short while, still don’t have much appetite, but can’t say for sure that it is the Tamoxifen at this point. Fatigue and low energy are also side effects, although not as bad as with the Arimedex.

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@batm

My worst side effect is hot flashes, throughout the day and night. I lost my appetite during radiation (Sept 2018), did not regain it while on Arimedex for a short while, still don’t have much appetite, but can’t say for sure that it is the Tamoxifen at this point. Fatigue and low energy are also side effects, although not as bad as with the Arimedex.

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Thank you for your reply batm. Yes, I also have days of fatigue and low energy. I took Arimidex for a year and a half, then Exemestane and now Tamoxifen. I don't have the degree of side effects that I did with the first two, but they are noticeable!

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@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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@cindylb Thanks for your response. I am a little confused about your diagnoses – you said you had LCIS diagnosis but also that your cancer was estrogen positive. Did you have a cancer diagnosis after the LCIS diagnosis? Thanks so much. Am trying to learn as much as possible but it’s confusing!

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@sparklegram

I began AI's with Arimidex and after a year and a half had to go off it due to painful joints, fatigue, and feeling ancient! next I tried Exemestane. i didn't really give it a fair trial, but began to feel the joint pain, so after a lengthy discussion with my Oncology N.P. I switched to Tamoxifen. I'm VERY interested to know what other people's side effects from Tamoxifen are. I've been on it for 7 weeks. Has anyone experienced severe itching and/or rashes?

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Sparklegram, YES, I had some pretty severe hives while on Tomoxifin. Last year I was on Tomoxifin and broke out with some pretty severe hives. I tried benedryl, and other over the counter meds., but nothing helped. I was miserable from the itching. It went on for several weeks and got so bad that I went to an emergency treatment center. The doctor there put my on a two week course of steroids to get rid of them. He told me to stop the Tomoxifin while I was on the steroids, and call my oncologist to let her know what was going on. The steroids worked and the hives went away. I saw my oncologist shortly after treatment for the hives. She gave me a break from any cancer drugs for a few months during the summer. I saw my oncologist in September and asked my to try exemestane. I’ve been on that for several months, and the side effect are much better. No hives! I also had issues with memory and cognitive function while on both anastrozole, and Tomoxifin. The memory issues I was having on anastrozole and Tomoxifin, are much better on Exemestane also. I’m very grateful there are drugs for treatment of breast cancer to lessen the chance of recurrence, but finding the right one for each of us is challenging!!! Best of luck to you, and hope you find relief from your current itching problems. Let us know how you are doing! We care!

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@lisman1408

Sparklegram, YES, I had some pretty severe hives while on Tomoxifin. Last year I was on Tomoxifin and broke out with some pretty severe hives. I tried benedryl, and other over the counter meds., but nothing helped. I was miserable from the itching. It went on for several weeks and got so bad that I went to an emergency treatment center. The doctor there put my on a two week course of steroids to get rid of them. He told me to stop the Tomoxifin while I was on the steroids, and call my oncologist to let her know what was going on. The steroids worked and the hives went away. I saw my oncologist shortly after treatment for the hives. She gave me a break from any cancer drugs for a few months during the summer. I saw my oncologist in September and asked my to try exemestane. I’ve been on that for several months, and the side effect are much better. No hives! I also had issues with memory and cognitive function while on both anastrozole, and Tomoxifin. The memory issues I was having on anastrozole and Tomoxifin, are much better on Exemestane also. I’m very grateful there are drugs for treatment of breast cancer to lessen the chance of recurrence, but finding the right one for each of us is challenging!!! Best of luck to you, and hope you find relief from your current itching problems. Let us know how you are doing! We care!

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Thank you, @lisman1408 !!!!

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@nycoceans

@cindylb Thanks for your response. I am a little confused about your diagnoses – you said you had LCIS diagnosis but also that your cancer was estrogen positive. Did you have a cancer diagnosis after the LCIS diagnosis? Thanks so much. Am trying to learn as much as possible but it’s confusing!

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I had LCIS 6 years ago and then 4 years ago I was diagnosed with invasive lobular carcinoma. So, I'm that case where the LCIS might turn into invasive cancer, might not turn into invasive cancer……….mine became invasive cancer. For what it's worth…..the LCIS was in the left breast and the invasive lobular was in the right breast….so not really a continuation of the same original site. I will preface this with the following………I had a long history with fibroids in my breasts, cysts and hormone issues that dogged me my whole life. I'm just saying this because it's so hard not to panic when you get that first diagnosis. It's common for many people to get LCIS or DCIS and then never have invasive cancer. I opted for the bi lateral mastectomy because the cancer or potential for cancer was in both breasts and in fact post surgery the tests showed not only LCIS in the tissue and invasive lobular but also Ductal Carcinoma in situ (DCIS) and other things starting as well. I was unable to tolerate any of the AI drugs so I didn't have that advantage and still don't today. I'm hopeful that there will be new meds researched and available in the near future. I'm low risk for recurrance but I was also low risk for the LCIS growing into an invasive cancer…..so I try to stay on top of options and new information. I hope that clarifies things a bit. Hugs

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@cindylb

I had LCIS 6 years ago and then 4 years ago I was diagnosed with invasive lobular carcinoma. So, I'm that case where the LCIS might turn into invasive cancer, might not turn into invasive cancer……….mine became invasive cancer. For what it's worth…..the LCIS was in the left breast and the invasive lobular was in the right breast….so not really a continuation of the same original site. I will preface this with the following………I had a long history with fibroids in my breasts, cysts and hormone issues that dogged me my whole life. I'm just saying this because it's so hard not to panic when you get that first diagnosis. It's common for many people to get LCIS or DCIS and then never have invasive cancer. I opted for the bi lateral mastectomy because the cancer or potential for cancer was in both breasts and in fact post surgery the tests showed not only LCIS in the tissue and invasive lobular but also Ductal Carcinoma in situ (DCIS) and other things starting as well. I was unable to tolerate any of the AI drugs so I didn't have that advantage and still don't today. I'm hopeful that there will be new meds researched and available in the near future. I'm low risk for recurrance but I was also low risk for the LCIS growing into an invasive cancer…..so I try to stay on top of options and new information. I hope that clarifies things a bit. Hugs

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I can tell from your note that I would like you. So sorry about everything you’ve been through. As I read your story I think perhaps I should try the AIs……… On 9/11 I lived – and still do live – 4 blocks from the World Trade Center. Can’t help but wonder
Pls keep in touch

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@lisman1408

Sparklegram, YES, I had some pretty severe hives while on Tomoxifin. Last year I was on Tomoxifin and broke out with some pretty severe hives. I tried benedryl, and other over the counter meds., but nothing helped. I was miserable from the itching. It went on for several weeks and got so bad that I went to an emergency treatment center. The doctor there put my on a two week course of steroids to get rid of them. He told me to stop the Tomoxifin while I was on the steroids, and call my oncologist to let her know what was going on. The steroids worked and the hives went away. I saw my oncologist shortly after treatment for the hives. She gave me a break from any cancer drugs for a few months during the summer. I saw my oncologist in September and asked my to try exemestane. I’ve been on that for several months, and the side effect are much better. No hives! I also had issues with memory and cognitive function while on both anastrozole, and Tomoxifin. The memory issues I was having on anastrozole and Tomoxifin, are much better on Exemestane also. I’m very grateful there are drugs for treatment of breast cancer to lessen the chance of recurrence, but finding the right one for each of us is challenging!!! Best of luck to you, and hope you find relief from your current itching problems. Let us know how you are doing! We care!

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Thanks so much for taking the time to respond. Despite being part of Sloan Kettering’s RISE (high risk) program, I have never met with an oncologist and the only AI discussed was Tamoxifen and never a mention of having a MRI. Sounds like it’s time for me to go see them and ask why.

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I was diagnosed with LCIS via a stereotactic biopsy in right breast. Surgical biopsy confirmed it. Following that, I chose to have a preventative double mastectomy, which led to the discovery of LCIS in the left breast as well. I thought that the double mastectomy would do away with the need for Tamoxifen, but my oncology NP is recommending I take tamoxifen 5mg for 5 years as an extra layer of protection. I feel that that is an overkill. The extra benefit doesn’t seem to outweigh the risks in my case. I would appreciate any inputs.

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@mayo101

I was diagnosed with LCIS via a stereotactic biopsy in right breast. Surgical biopsy confirmed it. Following that, I chose to have a preventative double mastectomy, which led to the discovery of LCIS in the left breast as well. I thought that the double mastectomy would do away with the need for Tamoxifen, but my oncology NP is recommending I take tamoxifen 5mg for 5 years as an extra layer of protection. I feel that that is an overkill. The extra benefit doesn’t seem to outweigh the risks in my case. I would appreciate any inputs.

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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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