now what if you are on tamoxifen?

DSC_0138So I think it is annoying enough that studies have decided women should not have pap smears necessarily on an annual basis – well unless you have had cancer and then I can’t remember exactly but I think I can get one every year and a half versus three years. But now they are changing it up again with Tamoxifen, and I have to be honest, the news is hitting me odd.

Being on Tamoxifen sometimes is hard.  I have mood swings and hot flashes.  Some days I just feel a slight undercurrent of blah achy tiredness for lack of a better description.  Some nights sleep doesn’t come easily, and some days I hate the way my skin feels and looks.  Sigh. Emotionally and physically some days Tamoxifen is just tough.

So I was watching the NBC Nightly News tonight and all of a sudden out of anchorman Brian William’s mouth comes the word “Tamoxifen”.

I had a hormone driven cancer, we have covered that ad naseum on this blog.  I have tried to make my peace with Tamoxifen although I find it rough on me, because face it the alternative to NOT taking it sucks.

But now this new study recommending has me confused.  Is five years going to be long enough for me?  If I don’t take it for ten years what happens? And say they would decide to have me take it for ten years, what would my additional risks be? I am being monitored closely by my doctors and so far so good, but this new study has put bugs in my head.

I am seeing my oncologist and stuff next week, so I will talk to him about this, but emotionally after hearing this news report I am in a weird place.  After all,  once you have had breast cancer, there is this little worry that simmers underneath.  Usually I can tamp down that small whisper of negativity, but today is just one of the crappy Tamoxifen days.

I am only human, and while I work really hard to remain positive, right now I am a swirl.

It will pass, and I will work it out.  I have a great life worth living.  It’s just some days the breast cancer of it all is daunting….and I say that as one of the lucky ones….

Breast cancer: Using tamoxifen longer saves lives 
By Marilynn Marchione, The Associated Press

Breast cancer patients who take the drug tamoxifen for 10 years instead of just the recommended five can further cut their chances of having the disease come back or kill them, researchers reported on Wednesday.

The surprise findings could change treatment, especially for younger women. Earlier research suggested that taking the hormone-blocking drug for longer than five years didn’t help and might even be harmful.

In the new study, researchers found that women who took tamoxifen for 10 years lowered their risk it would come back by 25 percent. They were 29 percent less likely to eventually die of breast cancer compared to those who took the pills for just five years.

In absolute terms, continuing on tamoxifen kept three additional women out of every 100 from dying of breast cancer within five to 14 years from when their disease was diagnosed. When added to the benefit from the first five years of use, a decade of tamoxifen can cut breast cancer mortality in half during the second decade after diagnosis, researchers estimate.

Some women balk at taking a preventive drug for so long, but for those at high risk of a recurrence, “this will be a convincer that they should continue,” said Dr. Peter Ravdin, director of the breast cancer program at the University of Texas Health Science Center in San Antonio….

About 50,000 of the roughly 230,000 new cases of breast cancer in the United States each year occur in women before menopause. Most breast cancers are fueled by estrogen, and hormone blockers are known to cut the risk of recurrence in such cases.

Tamoxifen long was the top choice, but newer drugs called aromatase inhibitors — sold as Arimidex, Femara, Aromasin and in generic form — do the job with less risk of causing uterine cancer and other problems.

But the newer drugs don’t work well before menopause….Brand-name versions of the newer hormone blockers, aromatase inhibitors, are $300 or more per month, but generics are available for much less.

The results pose a quandary for breast cancer patients past menopause and those who become menopausal because of their treatment — the vast majority of cases. Previous studies found that starting on one of the newer hormone blockers led to fewer relapses than initial treatment with tamoxifen did.

Another study found that switching to one of the new drugs after five years of tamoxifen cut the risk of breast cancer recurrence nearly in half — more than what was seen in the new study of 10 years of tamoxifen.

About carla

Writer, blogger, photographer, breast cancer survivor. I write about whatever strikes my fancy as I meander through life.
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12 Responses to now what if you are on tamoxifen?

  1. I’m right there with you – this news on Tamoxifen makes me go all, “whatthebahh” . . . as in, I’m not sure what to feel. The idea of being on a drug for 10 years is not attractive, though the idea of no recurrence is good. But a couple of things to keep in mind (as my husband reminded me when I freaked out this morning over mixed emotions): this is only a study, not an official guideline (at the moment, and these things can change in the future), and I have to hope more studies come out since this research was sponsored partly by an organization that produces Tamoxifen – which to me impacts the objectivity. I guess it’s wait and see. And like you, I’ll be chatting to my oncologist about this on the next visit. ~Catherine

  2. Okay, I too am at a loss. It seems likes this information in the Associated Press article makes a full circle. So, what’s a women to do? I’m going to have to talk with my medical oncologist as well. She usually gets things across to me in a simple manner.

    Thanks so much for sharing the information. I hadn’t heard it yet.

    BTW….I fully understand how you feel about the effects of Tamoxifen. It’s nice to know you’re hanging in there too.

  3. So Scared says:

    I have a very different issue with Tamoxifen and I’m hoping someone can help me. I am afraid to take it!! I am 47 and was diagnosed with invasive ductal carcinoma. I had a double mastectomy with immediate reconstruction. My Oncotype came back in the low end of the moderate range for recurrence. But I feel with the complete mastectomy the cancer is gone. I have had my prescription on a shelf for over a month and I am so afraid to take it. I was told one of the side effects is blood clots and this really scares me. I have never had a blood clot but I have issues with my lungs and I am so afraid I will end up with a clot. Please don’t judge me on my fears. As you all know the diagnosis and whole process is scary enough. I took the prescriptions off the shelf and now it sits on my counter……..Any words of advice would be helpful. Thank you!

    • Do you want to live or die? If you want to life, no offense, get over it. Dying is worse. Take your meds.

      • So Scared says:

        I take no offense. I guess I just don’t understand if I had a complete double mastectomy and everything since has come back clear of cancer…..why am I risking a blood clot that could kill me or uterine cancer that could kill me. I meet with my Oncologist again in two weeks. Maybe I just need to be educated a little more. P.S…….I took my first one about 10 minutes ago 🙂

      • Look I’m not to lie to you : I hate taking the stuff. However I know if I don’t I really run a very real risk of recurrence. And I get the whole fear of uterine cancer too- Before all of this I grew uterine fibroids and noncancerous tumors and ovarian cysts . My doctors are monitoring me. You will undoubtedly have hot flashes, you may or may not have mood swings, you may or may not have weight gain, but the thing is that you reduce your risk for recurrent. You have been through enough. I have a low oncotype score too. But part of what the oncotype score takes into consideration is taking the tamoxifen. I am also going to suggest if your health insurance will pay for it take the BRCA test. If you were on Facebook look for a closed group called beyond the pink moon and message it it is for survivors and those going through breast cancer treatment.

      • So Scared says:

        I did take the BRCA test and it came back negative for the gene. I have looked up the group you suggested on Facebook and plan to join. If I could ask just one questions about the tamoxifen side effects… you get muscle or joint pain? I heard some people do. Thanks for being honest and up front with me.

      • Yes some people get miscellaneous joint pain. However one thing you don’t know is that some people have virtually no side effects.

      • So Scared says:

        Thank you again for your honest replies. I have asked to join the group on Facebook. I look forward to connecting with others. I sometimes feel very alone in this journey.

  4. Hey So Scared,

    I thought I might chime in to say that while you might read scary stories about Tamoxifen . . . what doesn’t get reported, because it’s far more boring, are the women who get along fine with the drug. Personally, I’ve had hot flashes. That’s it. That’s all. And if you do have some extreme reaction, then your oncologist will help you sort that out, maybe switch prescription. . . But there’s big benefit in taking this drug, statistically speaking. I’m glad to see you’re giving it a shot.

  5. Pingback: playing doctor with tamoxifen | ihavebreastcancerblog

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