AI's vs Tamoxifen?

Hello everyone. I'm new here and recently diagnosed with DCIS E & P+. I had a lumpectomy 2 weeks ago and the pathology came back with a 5mm area of invasive DC, Her2 negative. I'm scheduled for another surgery to remove more tissue, as the margin was not wide enough, along with a sentinel node biopsy. If the node comes back negative for pathology and I have sufficient clear margin they will begin radiation treatment along with AI or Tamoxifen. I've had a hysterectomy, so won't have the uterine issues, but I'm wondering if someone out there can tell me about the other side effects associated with either AI's or Tamoxifen.

12 Replies

  • I also took Tamoxifen. The major side effect for me were the terrible hot flashes. I also had had a hysterectomy and even had my ovaries removed way before my diagnosis. Still the hot flashes were intense.

  • I was on tamoxifen for a short time. It made me very moody. I do not know if that is a typical side effect,but I could not deal with it. My doctor switched me to raloxifene and I had no side effects. I stayed on the drug for ten years.

  • I've been on both, tamoxifen for three years, after which I developed uterine cancer, got a hysterectomy, and then went on aromasin for the past 4 years. I'm surprised your doctor is not recommending aromasin since you are post-menopausal. I haven't really had many side effects from either except hot flashes (I'll take them over menstrual cramps any day). I've even been able to avoid osteoporosis by walking and weightlifting. And aromasin really gives me peace of mind, studies show the longer you take it the less likelihood of recurrence.

  • I was on Tamoxifen for 5 years. There is a small risk of blood clots as well has uterine cancer with taking this drug. Other side affects can be hot flashes and weight gain. AI side affects can be joint achiness and osteoporosis. According to the studies because your cancer was found so early and so small you may only have to take this treatment for 5 years as apposed to 10 years. That is why Medical Oncologist had me only take Tamoxifen for 5 years. Here is a excellent Audio recording that should help from SHARE. Best to listen with earphones on because the Dr walks away to point at a chart and it gets difficult to hear.

    I have had to back in to clear my margins and had radiation as well. If you would like to talk more about this call the SHARE helpline and ask for Leslie to give you a call. Hope this helps and hang in there 😊

  • Thank you DZiobrowski, gmasurvivor, and Kathymone for sharing your experiences. I appreciate the information and now have a better idea of the questions I need to be asking my provider. Keeping my fingers crossed that this next surgery reveals clean margins and nothing in the sentinel node! Best wishes to all.

  • Let us know how you do. We will be thinking of you.

  • AIs are a little bit more effective about one-three precent I believe but for some people they cause joint pain, arthritis, fatigue. They also result in loss of bone density and in a small increase in heart disease. They block the production of estrogen in your entire body. Tamoxifen on the other hand only block the estrogen receptors in your breast. They actually increase the estrogen in other organs and that is why there is a risk of uterine cancer ( not sure but about 1or 2 percent). They also elevate slightly your risk of pulmonary embolism and stroke and well as regular blood clots and catarracts. However, tam is good for your bone density and heart.

    All the bad side effects of tam are almost non existent if you are a white women under 60 women or a black women under 40. That is due to the prevalence of those side effects in tam are so rare in younger women. (Your risk of getting a stroke with tam is about twice the risk than for someone not on tam but lets say your risk of getting a stroke is zero at 40 you have no increased risk because 2 times zero is zero. What that means if you are lets say 70 your risk is much more than twice the normal risk since the figure of twice the risk is spread out to include people younger people who don't have any risk.) The reason for the difference between black and white women is that black women start at a much young age of having strokes, uterine cancer, etc.

    By the way you can monitor for a thickening of the uterine lining and go off of tam before you get uterine cancer.

  • I'm confused. I have had both my breast removed and I am on Tamoxifen. You said Tamoxifen only blocks the estrogen receptors in your breast then what is it really doing for me???? I have not had a period in over 1 year. Doctor doesn;t say why she won't change to a AI.

  • I have had no side affects. Also had a hysterectomy in my late 30s. never had much trouble with hot flashes either time. Sometimes get too warm than I take off my sweater is that a hot flash. I avoid wearing turtle necks other than that am far too busy to worry about it.

  • Hello. I am currently on an AI, exemestane and my symptoms are, severe hot flashes, thinning hair and tricky fingers I believe it is called, and bone pain, which is tolerable.lastly I am always hungry. For me it is difficult to loose weight. I wish the best for you

  • WBaca1 HI i'm Jo I have been on tamoxifen for over five years . The only side effect that i've had is really bad hot flashes. The al's I know nothing about. I had a mastectomy they didn't remove my lympnodes nor did I have any treatments. It was small it was considered stage 0. They found it when I had a mammagram. Sorry I couldn't give you more info. Good luck i'll be thinking of you. Let us know how things went. Jo Taylor

  • I have been on tamoxifen for about a year now. Im pre- menopausal at this point but i have had night sweats, hot flashes ,fatigue and my menstrual has not returned yet, but I think the worst side effect is just fatigue, its an anti cancer rx so of course there are side effects but they are pretty minimal. Hope this helps.

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