Should I take hormone therap?

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JoyE
JoyE Member Posts: 1

I was diagnosied with Invasive Ductual Carcinoma Stage I. I lost my right nipple and margins were clear. No invasion of lymp nodes. Doc says I have a 5% chance of return if I take the arimdex and a 6% chance if I don't take the hormone therapy. Is it worth it to take the hormone therapy?

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2016

    Dear JoyE, Welcome to the community. We are sorry about your diagnosis but glad that you reached out to our members. While you are waiting for some to respond you may want to check out the information that our main site provides about Hormone Therapy. Among other facts it offers questions to pose to your doctor. Keep us posted. The Mods

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2016

    Hi Joy - My stats were similar, and I did not want to do HT. My onc said it was a lot of faith to put in the oncotypedx number, so I'm taking it. Twenty one months to go, but who's counting? I don't think I could be convinced to do ten year, but we'll see. Take care!


  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2016

    Joy - it's your decision. Don't let anyone pressure you into taking HT meds. One of my friend's daughter decided not to because she is young and didn't want to be thrown into menopause. So far, so good for her. She is 2 years out

    farmer lucy - you had such a low Oncotype score I don't think I would do HT if I had your score. Mine was 11 which is still low too but my ONC wanted me to take first Arimidex and then Tamoxifen. My last ONC visit us next month! Yea! 5 years out and not taking it 10 years. ONC said no need.

    Diane


  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2016

    Woohoo! Congrats!


  • dtad
    dtad Member Posts: 2,323
    edited July 2016

    JOYE....Im confused. I thought your recurrence rate doubled if you don't take anti hormones. Just wondering....

  • Neen56
    Neen56 Member Posts: 14
    edited July 2016

    My MO said because my Oncotype number was so low, 5, that I definitely need to do H/T. She said higher oncotype scores mean we need chemo, lower numbers mean we need H/T. She said my chances of recurrence would increase by 35% if I didn't take it. I thought H/T would be the easy part of treatment but it's been the worst part.

    First I tried Letrozol and I turned into a depressed witch. It was horrible. I was angry and unhappy all the time. I told the MO that if I had to remain on Letrozol I would soon be divorced and have no friends. My husband agreed! So I was switched Exemestane. The first month was fine but into the second month I became more and more fatigued. It got to the point where I couldn't do anything without be exhausted and winded. I could barely make it up the stairs to my bedroom. I like to cook but had no energy to do it, I couldn't even do laundry, and grocery shopping was way more I could do, walking across the store wiped me out. The not flashes were bad and left me even more exhausted. I stopped taking it two weeks ago and most of the side effects have subsided but I still haven't returned to my previous energy level but it's much improved.

    I am seeing my MO the end of August to discuss where we go from here. Any suggestions? Does anyone have experience with H/T meds without such terrible side effects?

    thanks much

  • Pessa
    Pessa Member Posts: 519
    edited July 2016

    the Oncotype score is based on the assumption that one would be taking an AI or tamoxifen for 5 years. It is used it determine whether chemo would be helpful. It is not used to determine if an anti-hormonal is needed

  • Neen56
    Neen56 Member Posts: 14
    edited July 2016

    That's what I thought too, but my oncologist said otherwise. She said as much as a 5 oncotype score said I didn't need chemo it said just as strongly that I did need H/T. She said the low score made it all the more necessary that I remain on hormones. But who knows? Maybe she's wrong.

    What happens if I can't take H/T? At this point I don't want to take it but she said my odds of a recurrence would rise by 30 to 35%. Is that true? Or is my MO wrong about that too?

  • Pessa
    Pessa Member Posts: 519
    edited July 2016

    I don't know those statistics, but in general taking anti-hormonals if ER+ significantly decreases chances of recurrence. I am on year #6 of anastrazole and doing OK.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2016

    Hi Neen - My onc was adament about me taking HT with my oncotype of 3. My recurrence rate is 4% or it would approximately double to 8% if I didn't take it. Still my onc said that was a lot of faith to put in that one number if I decided not to take it.I did tamoxifen for two years, then had a ooph and did AIs for nine months. So far I've tried two and both Femara and Arimidex have been too hard to take. I may or may not try Aromisin. Right now I am back on Tamoxifen. It is a lot easier for me, and I can slog it out for 21 more months.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2016

    Hi Neen, each of the AI's is slightly different and you may find a change to Femara an option as the other two aren't doing for you. The other option is Tamoxifen which has a pretty good track record for minimal side effects and can be taken by both pre and post menopausal women.

    Speaking from experience, I was allergic to Tamoxifen, Arimadex made me a very old grumpy woman with a multitude of aches and pains and nearlly crippled me yet Femara has been really easy as far as side effects go and I have been on it for six years.

    What I am trying to say is, don't give up yet as there are still options available to you that may be a lot better than what you have now and can give you the protection you would like.

    Hoping you get some relief soon.

    Love n hugs. Chrissy

  • LeslieMemsicMD
    LeslieMemsicMD Member Posts: 29
    edited August 2016

    Hi. Hope your are felling well. I know it is scary to consider taking a medication which can has side effects and one that you may not believe you really need. Antihormone therapy is a proven treatment that absolutely saves women from recurrence, a new primary in the opposite breast and death. Studies initially suggested that 5 years was adequate but new information definitively proves that 10 years is even better in preventing recurrence or the development of metastatic disease. Not all women need 10 years, but I suggest that the data is so strong regarding the benefit of tamoxifen (for premenopausal women and postmenopausal women who cannot tolerate aromatase inhibitors such as Arimidex, Femara or Aromasin) and aromatase inhibitors despite the side effects (generally tolerable) that I absolutely recommend you try the drug recommended by your oncologist. The pills are taken daily so in the rare situation in which the patient cannot tolerate the drug, just stopping it will relieve all the side effects immediately. And there are nonhormone ways to treat some of the side effects including hot flashes, vaginal dryness and osteoporosis.The vast majority of patients have minimal or no problems with the drugs and the benefit is worth it. No one wants to deal with a recurrence of breast cancer. Good luck and take care.

  • dtad
    dtad Member Posts: 2,323
    edited August 2016

    LeslieMemsicMD....I respectfully disagree. To start My MO at a major NYC university based teaching hospital told me that only 50 percent of women complete the 5 years due to SE. I also disagree that stopping the medication will relieve SE immediately. Aromatase inhibitors can cause permanent joint issues. I'm not saying they are not valuable but lets not sugar coat the SE. It's very dismissive to the women who are suffering from the SE of these powerful drugs. There is no doubt that anti hormone drugs are effective on hormone positive breast cancer. The problem is that having almost no estrogen is unhealthy for almost every other organ in the body. Just read the boards. I'm thrilled for anyone that tolerates them well but we must address those who do not. Of course no one wants to deal with a recurrence but QOL is important too and its not 100 percent that you won't recur if you do take it. We all have to make our own educated decisions. Good luck to all...

  • julia_ann
    julia_ann Member Posts: 3
    edited August 2016

    Thank you. I was wondering if anyone else felt as I do. Just still so new and so scared. I want to make good decitions for me and my love ones, but QOL is huge in all of our lives.

    regards, julia.

  • dsgirl
    dsgirl Member Posts: 276
    edited August 2016

    Hello Ladies

    I usually don't read the Hormonal Therapy posts, because I don't take any, but saw this subject in Active Topics and thought I should post here. I am not recommending not taking ALs or whatever you Doctor recommend, but want to add my experience with Breast Cancer. As you can see below, I had no node involvement, did rads and knew I would be a basket case without any estrogen in my body, so I chose to not take ALs. July of this year is 7 years since my surgery, I am 75 years old. I see the oncologist yearly, have mammogram, breast exam and blood work. All our cancers are probably different, the grade 3 scared me a bit. I did not do the oncoscore test as I told MO I would not do chemo either.

    best wishes to all of the posters here

    dsgirl

  • dtad
    dtad Member Posts: 2,323
    edited August 2016

    Thanks dsgirl....always encouraging to hear from long term survivors. Continued good health!

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