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How vital is taking tamoxifen after a mastectomy on one side?
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ellen719 posted:
I am 47 yrs. had a complete mastectomy on one breast which was successful removal of the presence of DCIS. My oncologist wants me to take tamoxifen for the following 5 or 6 years to reduce chances of an issue with the other breast. I've been suffering hot flashes now without taking tamoxifen which seems to be popular side effect taking the drug, also an increased chance of ovarian cancer. My oncologist seemed matter of fact that you just "learn to deal with it" (side effects) and that everyone takes the tamoxifen to decrease chances involving the other breast. Is this true? Has anyone gone the route of supplements instead of tamoxifen? This drug seems to have a bad name with things I read on the web. Any ideas?
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rachael67 responded:
Glad to hear that the cancer was successfully removed. That is terrific! I am assuming this was a complete mastectomy, right? Therefore no need for radiation. I had DCIS, a lumpectomy, followed by 35 rounds of radiation. Although it was suggested that I take soem sort of anti-hormone (for me it woild ahve been an aromatase inhibitor as I was post-menopausal), I opted not to do so. Upon research and discussions with serveral medical oncologists, for me and my cancer it seemed the risks outweighed the benefits.

Please know that most ladies do go on to take some form of anti-hormone therapy. However, there are those of us who chose to follow a different path. Do your homework, investigate, discuss, and give it some good thought.

You will be in our thoughts that you can reach a comfortable decision. Please let us know how you are doing.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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ellen719 replied to rachael67's response:
Hi Rachael, yes complete mastectomy, therefore no radiation was required in my case. Would you mind sharing supplements or alternatives that have been working for you? I appreciate advise from those that have been through this. I live in a small community (pop. 800 or so). There is not a local support group as large communities often have, I had to travel 4 hrs for the surgery. Thank you for your reply,
Take care,
Ellen
 
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rachael67 replied to ellen719's response:
Ellen, I haven't taken any actual supplements except some vitamins and trying to remind myself that vegetables truly are my friends! (Can you tell I'm not a particularly good eater...nor exerciser, truth be told! This, despite the fact that I am aware both can help create a protective barrier against recurrance!)

Aside from possible responses you might get here, may I direct you to another site which is a "sister" site to this one but which focuses on natural and non-toxic approaches to breast cancer? It is Breast Cancer Treatments - the non-toxic way This site was established by Melissa (lizzardlee) who is extremely knowledgeable in this area. Be a bit patient in waiting for a response as she only checks in every few days, but I am confident she can offer you possible supplements.

Keep us posted on how you are doing!

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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juliamiss responded:
Hi, I am in a similar situation with the DCIS removed after a mastectomy. I am taking tamoxifen, four months now, and don't have any significant side effects. I was also concerned on the benefits vs bad side effects but decided to go ahead with taking it as it gives me some peace of mind that DCIS or cancer will not come back.
I read info on the web, but I am following my doctor's advice and taking tamoxifen. I will have an exam every 6 months for ovarian cancer and keep my fingers crossed for the next 3 to 5 years. Good luck to you, I am sorry you have to deal with this at 47 yrs. old. I am a "young" 63 and it is still very difficult for me.
 
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1confusedwoman responded:
This is the letter I was going to write almost word for word. I do not want to take tamoxifen. My surgeon and oncologist acted like they couldn't believe my attitude. I don't understand the trade off of maybe getting breast cancer again or a whole lot of other kind of cancers. The side effects sound horrible and the quality of your living could be lowered. Isn't there anything else than can be done? Every day that goes by I worry that I should be making a decision but I want and need more information.
 
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rachael67 replied to 1confusedwoman's response:
Please see my response to Ellen further up the thread. And do check out our sister exchange Breast Cancer Treatments - the non-toxic way

Good luck! And blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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ellen719 replied to 1confusedwoman's response:
Hello! These user reviews I found on this web md website are personal reviews from people with their experiences with "T". I read all 253 reviews and I think for myself, based on the reviews collectively, I say NO WAY. I am horrified with the majority of the responses. I'm left wondering if I am signing up for a different form of cancer that is not as easily detected as breast cancer is with regular mammograms and whether I can function on a day to day basis with "T". Let me know your thoughts after reading the reviews. I copied the full address below:

http://www.webmd.com/drugs/drugreview-4497-Tamoxifen Oral.aspx?drugid=4497&drugname=Tamoxifen Oral&pageIndex=21&sortby=3&conditionFilter=-500

I feel your confusion!
Blessings,
Ellen
 
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mantol responded:
I am echoing the same questions and concerns. I am in that mid-state of having just had a mastectomy, and am between stage 1-2 with some microscopic lymph node involvement, and do not want to take Tamoxifin b/c the side effects sound worse then the benefits. I am 40 years old and am VERY concerned about a medication that will compromise my quality of life for the next five years and then potential to introduce more cancer...is there a way to avoid *T* ? If I go through chemo is that good enough? I am ER/PR positive.
 
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beebles9 responded:
Hi Ellen719. Tamoxifen I was told by my onc and by doing research is for premenopausal women. I was getting awful side effects while on it so I stopped with my onc's approval.

He will start me on an aromatase inhibitor, which is for menopausal woman. I'm not looking forward to that b/c the aromatase inhibitor all cause joint pain.

Good luck. We all need it.
 
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dsrtgal responded:
I am struggling with the same issue of whether to take Tamoxifen! All the Drs. act like it is no big deal! Just take it!
I am past menopause and just had class I cancer with no lymph node involvement. Finished radiation a week ago. Where do I look for alternatives?
 
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lovemylibrary replied to dsrtgal's response:
I started taking tamoxifen about 6 weeks ago. I read all the reviews as well. I finally decided I wasn't signing a 5 year contract and if I had problems, I would just stop taking it. For me, it was worth a try and the benefits outweighed the risks. I have had no adverse side effects so far. I was diagnosed in Dec. '09 with stage 0 DCIS. I had a lumpectomy, then radiation. No problems with surgery or radiation other than fatigue at the end of the treatments. Hope this helps.
 
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dsrtgal replied to lovemylibrary's response:
Thanks for your input. Interesting that today my physician said if it (tamoxifen) doesn't agree with me quit taking it. Not carved in stone! I am just curious about alternatives.
 
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oceanbrz964 responded:
I am 80 years old, active and happy. Mastectomy 1979, no chemo offered. Went to bone in 1986, took Tamoxifen till June 1992. Had the "sweats" and each time said said, Yeah! it's working! Have taken several similar drugs simce and am still living and loving life. Know of no supplements that do what Tamoxifen does. I would do it again but each person has to weigh it out. I think your oncologist could have been kinder.
 
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kiwiallright responded:
HI

I had IDCIS & DCIS, lumpectomy & rad's I was 46 yrs old (2001) and choose not to take Tamoxifen because of the side effects and my survival percentage rate only increased abt 2% from 90% to 92% of reoccurance - - I felt that they should of taken out my ovaries etc, but they say no way. Then a neighbour's daughter had BC - was on Tamoxifen and had uterine cancer so right there my choice was not to take it.
Last year BC returned not as a reoccurance but as a new primary - same breast - things were not as nice this time, dreaded ole chemo, bilaterial mastecomy then believe it or not radiation.
After the damage chemo has caused I am real leary today of taking anything - - -

Good Luck with your decisions - -if you choose not to take Tamoxifin, make sure that you let them know that you have chosen not to take it not refused to take it - it took me a couple of years to get them to remove refused from the reports and replace it with choose.


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