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To take Tamoxifen or not to take Tamoxifen? Help!!!
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chinagirlsmama posted:
I was diagnosed in October 2010 with Ductal Carcinoma in Situ. I had a lumpectomy in December followed by 34 radiation treatments. I finished my radiation in March, and I was supposed to start Tamoxifen. I was deathly afraid to take this medicine. I am forty-one years old and a single mother of two. I never thought that I would have breast cancer anyway. It doesn't run in my family, and I didn't feel any lump. It just happened to show up on my FIRST mammogram. I tried taking Tamoxifen for two weeks. My period stopped, and I was totally anxious. I just knew that I would be the one to throw a blood clot or have a stroke and then what would happen to my kids? Anyway, does anyone have any practical advice out there for this stressed out mama? I don't know if I should just buck up and take it or try to do something more alternative. I hate feeling like I am putting poison in my body every day. I would appreciate any direction, advice, or wisdom that can be sent my way.

Signed,
Losing Sleep due to Tamoxifen
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0910faith responded:
Hi Chinagirlsmama,
First of all, I'm sorry you are going thru this . Your emotions
must be in overdrive. I won't go into my long story
but I will tell you I was diagnosed with Invasive Lobular
Cancer in my right breast. After two surgeries I decided to
have a Bi-Mastectomy. After I had that surgery they found
I had Ductal Carcinoma in Situ in my left breast. I did not
have radiation I did try Arimidex and Aromosin. I had bad
side effects from both. My next choice is the Tamoxifen.
I have chosen not to take it.
I will not advise you against it. This has to be your decision
and yours alone. Talk to your Oncologist or others that
you feel trust in to help you decide.
I wish you the very best.
love n hugs
faith
 
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cindy12345678 responded:
chubagirlsmama,
I was diagnosed in July 2010, with idc and infiltrating plemoric lobular carcinoma.. I did T/H A/C then bi mast. I still get herceptin and I take tamoxifen. My lobular was hormone positive. I have been in menopause since the chemo. I am 46
My onc thought my periods might start again but they haven't. I am too afraid not to take the tamoxifen. But you had ductal insitu. I think it is a personal choice. Did your onc give you any statistics? I haven't had any side effects with it other than hotflashes. And It might just be the menopause. Tamoxifen doesn't feel like poison to me after taking chemo. You need to talk to your onc about why they think you should take it. I feel that my chances are better with it than with out it.Again it is a personal choice and we have to be comfortable with our choices. Good luck to you and let me know what you decide.
Cindy
 
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judyfams replied to cindy12345678's response:
It is a very difficult personal decision to make. When you had your radiation do you know if your armpit was also irradiatied. I ask this because that is where the sentinel and axillary nodes are located, and if that area was irradiated you have another layer of protection. Ask you Radiation Oncologist about that and maybe that information will help you make your ultimate decision. You might also want to ask the radiation oncologist and your breast surgeon for their opinion about not taking Tamoxifen.
You will find that there are women here who have opted NOT to take Tamoxifen and women here who would put up with any side effects so they CAN take Tamoxifen.
You will get both groups to respond to you - but only you can weigh the pros and cons of taking Tamoxifen. Have you asked your medical oncologist based on your specific pathology report what is your risk percentage of having a recurrence if you do not take Tamoxifen vs. taking Tamoxifen?
There is no rush for you to make this decision immediately, you can wait a few weeks. Since you are so anxious that may be why you are having trouble making a decision. Ask you medical oncologist for some anti-anxiety medicine that you can take so you will be in a calmer state of mind while trying to make this decision.
I wish you good luck in making this decision. Please let us know how you are doing.
Judy
 
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rachael67 responded:
You've been given much good advice. I also had DCIS which was followed by a lumpectomy and 35 rounds of rads. Although it was suggested that I take the anti-hormone therapy, I decided against it. For me the risks out-weighed the benefits. BUT......it is up to you to make such a decision. You will want to learn all you can about your particular tumor...How aggressive was it? And you will want to see the statistical numbers as to how much added protection will a med give you. And check out all meds that might be appropriate/available for you.

Judy is right that that you have a bit to time to make the decision so take it.

You must also add possible worry and anxiety as that is part of the equation since it has reprocussions as well.

It is tough having so many choices, but we certainly wouldn't want not to have them.

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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SharonLutz responded:
This is a 2 year old post. What did you decide to do? I have been diagnosed with DCIS and am taking Tamox but don't like the long term side effect possibilities. I am tolerating it well for now.
SharonLutz
 
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supergrangran responded:
I have a friend who had similar cancer and treatment to yours and she told her doctor she was not keen on tamoxifen when she read the side effects and to my surprise her doc said 'don't take it then'. That was four years ago and she has been fine but I stress that she got the docs approval.

She has also kept really well compared to others in my area who did take the drugs. Hope this helps I know if I had my time again and could handle the pressure that I got from family to do my best to survive I would not take it.

Let me know what you decide but make sure that you speak to your doc.

Christine x
 
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kiwiallright responded:
HI

I always get a kick out of advertisement for drugs, this drug will do this for you but it could also do all of these other things that could cause, heart attack, blood clots you name it there is always a drug with some kind of side effect.
I chose not to take tamoxifen because I was 45, and they would not take out my ovaries, I did fine without it. I was re diagnosed at year eight and was told that even if I had taken it it would not have matter as it was a different type of BC. Isn't it interesting that there are many types of BC. I am taking Femara because of my second DX -
With any type of disease we are all faced with the challenge of, is taking the drug worth the side effects. It is so a personal choice, when I have made my decisions about taking this or that drug, I never regret the choice that I made regardless of the outcome. Now chemo is a whole different ball game, did it once and have vowed I would not do it again. Interesting that my Dr suggest I have a round to Taxol last year with the re dx and I said no as it has already done its damage and would prefer quality of quantity. As with everything we may not make others happy with our choices but they are yours, mine and ours and not everyone else's. Take care and enjoy the day.

Love to all

Mary


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