tomox question??
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I have a question about Tomox. I wrote on this back in march I think. I had breast reduction surgery at the end of jan (love it) and found out that i had LCIS as a result from tissue biopsy. They then checked many other areas in the tissue and it was only in 1 spot thankfully. I am estrogen positive, 47 years old, pre-menopausal and have 3 kids under the age of 13. After many consults with Oncologists and b surgeon I thought I was going to go on Tomox, but I can't bring myself to do it. I am so worried about SE's and how it will affect me and then I worry about the risk of stroke etc. I have an appt for my 6 month mammo at the end of June, I am sure he will want to talk more about it then. This is what I am wondering - if I were to have an oophrectomy/hysterectomy would removing that estrogen be sufficient or really is that still not enough?? i sure people have done this and still are on Tomox but i am just trying to figure out the best route to take. I thought I was handling this whole thing pretty well but taking this med just freaks me out. I know I probably should just try it and see but i started thinking more about these other ways of removing some of estrogen. Can anyone give me advice on this? Thanks ahead of time. I found this site soon after diagnosis and was soo happy - everyone here seems sooooo supportive!!!!! I also put this post on the hormone treatment section as well. Now obviously I realize that taking this med and dealing with possible SE is better than BC, but i am still just so worried.
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Hi, there,
Have you asked your oncologist about this? At one point, mine did mention having an oophorectomy, BUT this was only after I'd tried tamoxifen for over a year. If I'd had that surgery, I would have also had to take Arimidex afterward. Upon further discussion, we decided that this surgery was not appropriate treatment for me. This was partly because of another medical condition and partly because of the risk of osteoporosis and raised cholesterol. It is definitely something to discuss with your oncologist, because there is no one right answer about this.
Tamoxifen seems scary, I know, but most people do fine on it. I didn't, but most people do. The risk of stroke is small (unless you have other risk factors). Most side effects of tamoxifen are not serious. They may be annoying, even to the point that you would want to stop taking the drug, as I did. But you will most likely not be permanently harmed by taking tamoxifen, even if the side effects force you to quit. It seems extreme to go directly to surgery without at least trying less invasive treatment, but again, only your doctor can answer this for you.
It is not an easy process. Be sure to let your doctors know how you feel. They should be able to help you find the treatment that is right for you.
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Its a very individual choice, as lucky said.
According to this 2004 article, only about 40% of the AH and LCIS women that are offered it take tamoxifen. (The study took records from 1998 to 2002.) http://www.ncbi.nlm.nih.gov/pubmed/15112259
In this earlier 2002 study, less than 5% did. http://www.ncbi.nlm.nih.gov/pubmed/11508619
That does NOT mean it is right or wrong for you, only that you will not be alone, no matter what your choice is.
It may also make a difference if you have a family history of breast/ovarian cancer (thus may be BRCA or some other gene positive), thus may be at higher risk than just from LCIS.
One thing about tamoxifen is that you can take it for a time, and if you find it doesn't work for you, you can stop. Surgery does not have this option.
Remember, the approximate risk for breast cancer for women with LCIS is usually estimated to be about 0.5-1% per year, so if you are now 40 years old and expect to live to 80 years old, your risk would be about 20-40% (without tamoxifen or PBM). Also remember, that some estimate that even IF you get breast cancer, about 2/3 (about 65%) of the women who get breast cancer end up dying of *something else*. -
62192--I was diagnosed with LCIS almost 5 years ago--had lumpectomy, am very closely monitored with mammos and MRIs, do frequent breast exams and take tamoxifen. My SEs initially were mild hot flashes. Unfortunately, I developed a large ovarian mass which turned out to be ovarian cysts which ruptured and I ended up with a total abdominal hysterectomy. I don't say this to scare you (or anyone contemplating taking tamox); I think it may have been a very rare SE and I just got the short end of the stick. I mention it only to suggest to others that a yearly transvaginal ultrasound is a good idea to monitor both the uterine lining and the ovaries. I actually firmly believe it is a very good preventative medication and I still take it even having been thru major surgery and immediate surgical menopause; (The AIs are not indicated for use with LCIS as they have not been studied with LCIS long enough) as there is still estrogen being produced by the adrenal glands, skin and fat. AS others have said, you can always try it and stop if you don't tolerate it well. The serious SEs (endometrial cancer and blood clots) are reportedly very rare, less than 1%; and it does decrease your risk by 40 to 50%. I like knowing I am doing something proactive to try and prevent an invasive bc (I have further increased risk due to family history--mom had ILC)--it is a very personal decision. Talk with your oncologist about all your risks and benefits of taking tamox.Anne
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62, You may find this article interesting--I did. I am also considering Tamoxifen.
http://www.dslrf.org/breastcancer/content.asp?L2=2&L3=6&SID=130&CID=1282&PID=14&CATID=0
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