Anyone NOT elect to do Hormone Therapy?

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  • farmerjo
    farmerjo Member Posts: 518
    edited March 2015

    Eheinrich...I just did a search for depression and came across your post.

    First, your signature block looks just like mine. My oncotype was 19 and was told I did not need chemo so I'm confused? My ER is 90% so he feels hormonal therapy alone is sufficient.

    I am two weeks out from my surgery and haven't seen an oncologist yet. I was on hormone replacement therapy for 17 years until diagnosis. I am in the throes of menopause and the depression is a deep dark place for me. I have never had depression previously. Actually, I find the depression debilitating and concerned when I start hormonal therapy because they say that will make it worse. I have seen on this forum where women did not take hormonal therapy but that's pretty risky as your oncotype recurrence score is based on treatment. 

    Your team will take your history into consideration and come up with a plan, but more importantly, don't be afraid to speak up and voice your concerns. That's what I plan to do.

  • Rockym
    Rockym Member Posts: 1,261
    edited March 2015

    I think it's important to mention that age plays a role in treatment big time. The younger you are, the more treatment you get. Younger ladies have a lot more life ahead of them and if you get cancer at a younger age, typically it is more aggressive. Also, cancer cells hide... this is why some of us do chemo. I put my birth year by my avatar because BCO give us no where to show how old we are up front. Even our profiles don't allow for just a year. Regardless, the chances of recurrence and/or mets is what we are protecting ourselves from.

    There are so many variables that play into it so just because someone has the same dx information means very little. My Oncotype was 21 or 22, but when my BS check my SN, it was clear. He knew my cancer was very close to my armpit so he took a few extra nodes anyway. There was micromets in 2 of them. Because of my age at time of dx, I opted for chemo light. There is a statistic calculator out there that will tell you more about chemo and anti-hormone meds. or just chemo or just anti-hormone meds.

    I will say you can try it and see. If it doesn't work for you, you go back to plan B. I am almost 4 years out, my hair is beautiful and long again, breasts look good and my quality of life rocks. I am not bragging, just letting new ladies know that life gets better and moves on.

  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Rocky: I have often thought seeing an age in the signature (dx) would be very helpful.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited March 2015

    I think so too, Trvler.

    The majority of those diagnosed with bc are over age 60, so more posters are likely in that age range.

    This is somewhat of a generalization, but younger patients tend to have more aggressive cancers, with faster metabolism (less weight gain, easier weight loss, higher degree of return of sexuality, thicker hair, etc.)

  • eheinrich
    eheinrich Member Posts: 792
    edited March 2015

    I'm 46. So that's part of why chemo is on the table.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited March 2015

    For those who would like to see the option of listing age added, here is a link for joining the request (I hope):

    https://community.breastcancer.org/forum/93/topic/826514?page=1#post_4322538

  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2015

    I was 41 at first dx, 53 at second dx.

  • Rockym
    Rockym Member Posts: 1,261
    edited March 2015

    I started a thread a while back to try and get them to have our age listed front and center. There was even some argument from people about this as they thought they would have to. Nobody has to do anything with what they list, but the Mods just kind forgot about us back then in October 2013. There were lots of us that wanted the addition because when we do give advise, etc. it's pretty helpful to know if the lady is 40, 60 or 80. Big differences!

    https://community.breastcancer.org/forum/93/topic/795805?page=3



  • farmerjo
    farmerjo Member Posts: 518
    edited March 2015

    Bren58...if you don't mind my asking, where was your second cancer? I see you had bmx the first time-around.

  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2015

    jilly, it was in the lymph nodes under my arm. PcR with chemo and no cancer found with the ALND.

  • farmerjo
    farmerjo Member Posts: 518
    edited March 2015

    Bren...that is crazy, had no idea that could happen. So basically, even though my sentinel was negative, there are no guarantees (clean lymph nodes)? I'm still learning. My lesion was at six o'clock, right in the crease and actually had attached to the skin. My BS said no chemo, and although I am relieved, also unsettling at the same time. 

    How was your recurrence discovered?

    I am on the Maryland line...DD in Philly.

  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2015

    Jilly, after my second DX I did go back and look at my reports from 2000. I discovered that I actually did have micromets back in 2000. But the SNB testing was in it's infancy so I don't really think they knew what to do about micromets. The docs thought I would be able to just have a lumpectomy but I chose a BMX. In the end that was a good choice because the DCIS was in more quadrants that they thought and I would have wound up having to have at least a MX anyway. They also did not do Her 2 testing back then, so I have no idea if I was Her2+ at first dx. Their was never any mention of chemo or rads back then either. Just a suggestion that I might want to do 5 years of tamoxifen. They didn't even follow me! And I went to a well known cancer center outside of Philly.

    I found the lump under my arm. My GYN and surgeon both were shocked that it came back positive for cancer, both thought it was either scar tissue or a cyst.

  • GG27
    GG27 Member Posts: 2,128
    edited March 2015

    So I'm going to jump in here. I was on tamox for almost 5 years, first 2 years was easy then I had a terrible time with SE's, discovered that the fillers in some of them are what was causing all my problems with extremely painful joints, night sweats etc. When I went to stage IV, the tamox obviously wasn't working for me anymore, I went on anastrozole & have been on it since May and haven't had any SE's from it.

    I wanted to throw everything I could at it, I wanted no second guessing... if only I had done "whatever" Just for your statistical evidence, I was 48 at the time of first diagnosis & BMI of 23, in good shape, ate really healthy, drank occasionally. GG


    edited to add - Just 6 months prior to mets, my onco had "dumped" my file as I was too healthy & she felt that I had passed the five year mark & probably wouldn't recur.

  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    I am curious. Are some people taking generic tamoxifen?

  • GG27
    GG27 Member Posts: 2,128
    edited March 2015

    I believe that my onco told me that everyone who is taking tamox is on a generic as the original drug company no longer makes Nolvadex. GG

  • farmerjo
    farmerjo Member Posts: 518
    edited March 2015

    Bren...wow. It seems much progress has been made in fighting this disease but still a long way to go.

    I have my first follow-up with BS Monday and hope they won't fuss when I ask for a copy of my pathology. Do they currently treat micromets with radiation? I had this strange stinging sensation in cancer breast prior to dx.. That stinging spread to my axilla so I was surprised to have a negative sentinel node.

    I'm being treated in Maryland. I guess what has surprised me most is how 'mechanical' the medical profession has become. I was given no discharge instructions whatsoever. Nada. How long am I supposed to take this antibiotic? Activity restrictions? Also, I found the hospital staff to be clinically cold...indifferent. Where did the compassion go? One nurse actually said to me "you're not the only one that's gone thru this". Sigh. Ditto for the PS.

    I was physically fit, non-smoker, no alcohol, normal BMI. Go figure. Never once did it ever cross my mind about breast cancer. I focused on heart disease prevention, etc..

  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Wow, Jilly. That nurse is cold.

    My issue with the medical system is that you are like a number in a cattle factory. I have met some compassionate people. But the insensitivity of some is mind boggling…like your nurse there.

  • debiann
    debiann Member Posts: 1,200
    edited March 2015

    I read on another thread that the fillers in the generic drugs can vary and simply switching from one brand to another can make a difference in side effects. I also learned that pharmacies may change the company they get the drugs and this can be a problem for some. I noted that several women found arimidex made by TEVA to be the most tolerable, so thats what I take. You can instruct your pharmacy not to change your brand.

  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    That's kind of what I was getting at, Debiann.

    My daughter takes Ritalin and her pediatrician says don't accept a generic. They gave me a generic once even thought he had signed the 'no substitute's' line on the prescription. I didn't notice they have given me the generic when I picked it up. They wouldn't take it back (even though it was unopened) and I had to get a whole new prescription in hand before I could get the brand. He says pharmacies push the generics because they make more $. They definitely push the generics. EVERY month I got to get it and they ask me if I want generic. I make him sign exactly on the line so they don't make me go through all of that again. I googled it to see if it made any difference and many people said when they take the generic, they had bad side effects or the meds don't work.

    SO, if one generic doesn't work for you, see if you can get a different one. They are not all the same.

  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2015

    GG, I did not think they were allowed to dump your file. I have never run into that. Even after 12 years I was able to get my records. They had been archived and kept off site, so it took a little longer, but they were still available. I am sorry that your doc did that to your records!

  • GG27
    GG27 Member Posts: 2,128
    edited March 2015

    Bren, I should have explained what I meant by "dumping" She didn't actually throw my file away, it was just her way of saying that it wouldn't be on her desk anymore, because she was convinced that I wouldn't recur after that time. There are laws in place here that your medical records are kept. GG

  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015
  • katcar0001
    katcar0001 Member Posts: 621
    edited May 2015

    I buy the brand name Nolvadex made by Astra-Zeneca in Mexico, just in case any of you are near the border.

  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    Katcar - what is that for?

  • katcar0001
    katcar0001 Member Posts: 621
    edited May 2015

    It is the original brand name of Tamoxifen that is not longer produced or distributed in the U.S. It is available in Mexico and other countries. I find it easy to tolerate.

  • mhenz
    mhenz Member Posts: 19
    edited May 2015

    Carynbrit

    I am with you my gut says no. I'm more concerned with the secondary cancer ovarian from the tamoxifen. Since it is hard to detect and will tend to be more aggressive. Why risk another. I stated it for several weeks before rads but stopped as nausea, headaches, fatigue. I said I would resume after radiation but I'm honestly not sure I will. We are in charge of our care. The doctors will just manage it. Healthy eating and exercise seem to be the nest defense. Good luck. Prayers for peace in your decision.

  • farmerjo
    farmerjo Member Posts: 518
    edited June 2016

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