Statistical Evidence of the Benefits

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DesireeM
DesireeM Member Posts: 5
edited January 2015 in Hormonal Therapy - Before, During, and After

I'm 59. The cancer treatment itself was tolerable because you had no choice and you knew it was for a limited time. Being on the post treatment hormone therapy for er+ breast cancer is horrible. It's been six months. Is there any real statistical evidence that this is worth it? I can't imagine being on these drugs for 10 years. I stopped taking exemestane on Thursday. I've already tried Letrozole. Exemestane is far worse.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2015

    Statistically, yes, they reduce your risk of recurrence rate by approximately 50%.

    You should discuss with your oncologist what your risk is with & without the drugs as to whether it is worth it to you personally

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  • DesireeM
    DesireeM Member Posts: 5
    edited January 2015

    I had a double mastectomy. I also participated in a radiation oncology trial so after chemo and the trial my tumor was only 4cm with 1% of the tumor being cancer. It was removed with clean margins. The sentinel node was cancer free although a stray node showed cancer. The double mastectomy was Dec 24, 2013. Then I developed a surgical staph infection that took nearly five months to get over. After that I had extensive physical therapy. I still can't raise my left arm. Once I started Letrozole I had severe joint pain. The doctor switched me to exes thanking. I've had rashes, weight gain, severe constipation, constant sore throat, severe joint pain and it's a steroid that makes me even depressed. I've had two scans with good results. I have to work but I'm exhausted from the pain in my chest from the scar tissue and the side effects from the hormone therapy. With that history is it still worth it

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2015

    You need to talk to your doctor. It doesn't sound like you've been told your recurrence risk and you need to know that to make an educated decision

    I'm sorry this has happened to you.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2015

    You haven't listed your diagnosis so I can't speak to that, but for me chemo had a 20% risk reduction, anti-hormonals 40%.....huge! As Melissa says, you need to have a conversation with your doctor.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited January 2015

    Desiree,

    Your posts almost sound like you are asking people of this forum for permission to stop taking the AI drugs. I just don't think we are going to be willing to do that. This is a conversation you really need to have with your oncologist. There are women who have chosen to stop taking the AI's and/or Tamoxifen for their own reasons but I don't think they advocate for that. Call your doctor. Make an appointment. Access your risks. Make your decision based on all the facts with your doctor.

    Sincerely hope that you find the proper accommodations to make your life tolerable.

    *susan*

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  • DesireeM
    DesireeM Member Posts: 5
    edited January 2015

    thank you so much though. I have asked about the statistical evidence and have never gotten a real answer. I will call first thing tomorrow.

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  • DesireeM
    DesireeM Member Posts: 5
    edited January 2015

    thank you.

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  • DesireeM
    DesireeM Member Posts: 5
    edited January 2015

    Thank you for your response. I am new to the forum and this is the first time I've ever subscribed to a blog or forum. I just did what the doctors prescribed. Ishould have asked many more questions at the start of my treatment.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2015

    I think one can get too overwhelmed when this happens, but you can start asking questions now! Get a notebook & write down your questions ahead of time, bring the notebook with to appointments and write down the answers as you get them. Also, it is a good idea to get a copy of all your reports etc. and keep them in a file.

    Stay off google. These discussion pages are great, but of course, we are not medical doctors so you have to take everything any of us says with a grain of salt. There is a lot of good reliable factual information you can get from the topics list on the top of the BCO home page. Look through the topics. You can print off and keep and/or bring areas of interest/questions you get from reading them along to appointments as well.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited January 2015

    Desiree,

    Great that you will see your doctor. Hard to know what questions to ask when you are plunged into the Great Pool of New Information. Thank goodness we can make followup appointments to ask the questions we now know we have.

    Do report back on how you are doing.

    *susan*

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  • grammakathy
    grammakathy Member Posts: 407
    edited January 2015

    DesireeM - I'd like to second the recommendation that you get a printout of everything - pathology report, surgery information, Oncology appointments.  Often you will pick up more details to help in your decisions.  It is overwhelming and handling it is a step by step process.  Hugs - you can do this and make the right decisions for you.

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  • tgtg
    tgtg Member Posts: 266
    edited January 2015

    DesireeM--

    When making my decision about Tamoxifen, I found this article, which gives a very detailed statistical break-down of outcomes in Table 1 (just click on it and you'll be able to read it and print it): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2784208/

    This article applied more directly to my age then (71), but it was the only one I found that gave real numbers and lots of food for thought, since they classified the participants in many ways, which was also enlightening. If you can't retrieve the article, PM me and I can send you a pdf copy of it. tgtg

    PS--I also found another article from the U of Toronto that tipped my balances in favor of declining tamox entirely: F.E. Vera-Badillo et al., "Bias in Reporting of End Points of Efficacy and Toxicity in Randomized, Clinical Trials for Women with Breast Cancer," Annals of Oncology, 9 Jan. 2013

    http://annonc.oxfordjournals.org/content/early/2013/01/04/annonc.mds636.full


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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    Desiree, I'm sorry you're having such a very tough time of it. Given your situation, I can see that you would want some evidence that A/Is will be worth it for you. I hope you'll get some very helpful info at your appt.

    One nurse navigator gave me some very good advice, early on, that I will share for your consideration. She said that if a doctor didn't address a question to my satisfaction to NEVER hesitate to stop them and tell them that they haven't answered your question and that you don't want to move on until you understand the issue.

    I wrote that down and have used it a couple of times; it's a valuable approach for me and I hope it helps you.

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