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Posts: 61
Joined: Dec 2009

My doctor said that we will discuss Tamoxifen. I had negative nodes and clear margins with a bilateral mastectomy (very small area (0.5cm) of invasive cells; otherwise, all DCIS). I am concerned about the risks of tamoxifen, particularly that of uterine cancer. I have none of the risk factors for breast cancer but I got it. With my family history of ALL cancers, I worry that the risks of Tamoxifen for me would be greater than the benefits. Doc says without tamoxifen, I have a 94% survivability rate. With tamoxifen, that goes up to 98%. Have any of you decided against taking Tamoxifen? If so, why? If not, why not?

Posts: 20
Joined: Jan 2010

Hi, My name is Darlene and I had taken Tamoxifen for five years as directed by my oncologist, that was from 2000-2005. Today I am fighting a new breed of breast cancer called triple negative breast cancer. It is a very agressive and difficult type of disease, and hard to cure. The research I have done indicates a strong possibility that this was the result of taking Tamoxifen. The stats I have seen on this site, and others, indicate that the odds of developing triple negative breast cancer are greatly increased if you take Tamoxifen. I don't want to scare you, but I implore you to check into this further before you make your decision. Good luck with your treatment!

outdoorgirl's picture
Posts: 1569
Joined: Apr 2009

I am curious as to where you got your info about the odds of having triple negative being increased if you take tamoxifen.I havn't heard anything like that from my onc or anywhere else...

cathyp's picture
Posts: 365
Joined: Dec 2009

So glad you asked this question. I have felt alone until I read your post. I had a .3 cm invasive w/some dcis and lcis in other breast. Most likely a result of radiation treatment for Hodgkins Lymphoma 20 yrs ago. I had a double mastectomy 2 yrs ago. I could not have rads because of rads for HD. No chemo cause my heart took a hit from the HD chemo treatment. Also, chemo would had reduced risk of reoccur by 2%. Started Tamoxifen 5 mos after surg and encountered gyno issues of weird periods, large ovarian cyst and high CA-125 levels. Cyst benign but stopped Tamox after 2 months. My oncotype testing had a reoccur score of 8 taking Tamoxifen. I may have had a TIA this summer, so I am worried to restart or ever take Tamox. Also, I am worried to have had Invasive Breast Cancer w/virtually no treatment. Our chances of reoccurence is below 10%. Hopefully we can focus on the 90% and not the 10%. My oncologist (who is a male breat cancer survivor) told me that there is some concensus, that a healthy diet is as effective as taking tamoxifen.

ppurdin's picture
Posts: 1149
Joined: Jul 2009

Hi,I started taking this 2 weeks ago.and i can not sleep at night.when i do fall asleep for a few hrs. I have the strangest dreams.During Chemo I had trouble sleeping but during rads. I slept pretty good.I have also had some bad headachs.I read where headachs are a side effect but it doesn,t say anything about bothering sleep.i wonder,d if anyone eles has had this problem.Thank you. Pat.

Dawne.Hope's picture
Posts: 825
Joined: Sep 2009

I had terrible headaches the first couple of weeks taking Tamoxifen ... since then I don't have them anymore. I've had trouble sleeping too, but not sure it is from Tamoxifen or just the stress of life.

We're all so different. When I first started, I took 1/2 in the morning 1/2 at night, but the headaches were so bad, I started taking the full pill at night and the headaches subsided. Maybe if you change the way you take it ... it will help. Do talk to your doctor first, though.

Posts: 166
Joined: Jun 2009

Hello, Pat.
I was taking my pill at bed time and couldn't sleep, headaches and hot flashes.
I'm taking it in the morning, still get some headaches, hot flashes but can sleep
much better.

Sher43009's picture
Posts: 602
Joined: Nov 2009

Hi I also read the study that tamoxefin can cause Triple - BC. It's on the National Comprehensive Cancer Network www.nccn.org search tomoxefin. It's a new study that's dated Dec. 09 stating that tamoxefin increases the chances of triple - bc in the other breast.

I showed it to my oncol. and he showed it to the docs at Danna Farber. The conclusion from them is that you can't jump on the band wagon of 1 study and disregard the 5000 other studies done. And it's an individual case by case evaluation.

I have to take it as it adds 11% to my survival rate.

Good luck with your decision.

Posts: 285
Joined: Nov 2009

I had invasive and DCIS, very small tumor .4mm, clean margins/nodes and very very low grade. Lumpectomy was my choice and I also just started tamoxifen. Like all of you, I had my concerns about side effects like blood clots and depression. I had all but decided that I would not take the med. My onc gave me the same numbers that you posted and added one more piece of data that was missing....she told me that tamoxifen decreases the chances of DCIS advancing to invasive bc by 50%! This was a number I just couldn't argue with.

She was very encouraging, letting me know there are meds to deal w/side effects and possibly even other agents if I don't tolerate the tamoxifen for whatever reason.

I think the bottom line is that each woman will make a decision that's right for her. No judgement there. Just as some women opt for mastecomy vs lumpectomy (even though long term survival, 10 - 20 years, is the same; and some will add chemo because it improves their chances by 3% while others are willing to risk that 3% so they don't have do the chemo thing. It will really depend on your own situation.

Good luck w/your decision...God Bless....

Posts: 61
Joined: Dec 2009

I had a bilateral mastectomy so I don't need to worry about any DCIS advancing! That was the right decision for me and I'm very glad that I went with my gut on that one. Peace of mind was of the highest importance for me. Thank you for your input. I appreciate the help.

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