Has anyone refused hormone therapy?

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I have had a bilateral mastectomy with tran flap and nipple sparing. I have one more surgery to go in 4 weeks that will tweek the shape of the flaps and include inplants. My pathology reports came back negative for cancer cells...and I was told that I am cancer free. Lymph nodes have been negative on every test for cancer cells. My question is...why do I have to do hormone therapy (taking Famara for 10 years) if I am cancer free? Our family has a genetic history of Osteoporosis in our family...so taking a drug that will enhance bone loss is not something I want to do. Has anyone refused to do the hormone therapy and not regretted it?

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2013


    If your pathology reports came back negative for cancer, what was your diagnosis? I assume that some cancer was found in a biopsy and that's what led to your decision to have the BMX? It's the nature of that cancer that determines your risk level that some cancer cells might still be in your body (beyond your breast and nodes) and that in term determines whether or not hormone therapy would be an overall benefit to you or not.

  • almostthere
    almostthere Member Posts: 3
    edited October 2013


    Beesie,


    I had a 4cm lump in my right breast to begin with.. 6 rounds of chemo and the cancer was gone. NO cancer cells on pathology report from breast tissue at time of surgery (bilateral mastectomy) on Sept. 4. I am told I am cancer free. I was stunned when told I would need to go on Famara for 10 years due to "slightly" elevated levels of estrogen. 8 nodes prior to surgery were biopsied and found NO cancer cells. One was biopsied at the time of surgery and NO cancer cells were found.

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2013


    Okay, I understand. So here's why you are being recommended to go on Femara:

    Topic: Susan Love, MD blog: "All Cancer is Metastatic"


    While I don't agree with Dr. Love's choice of words (as you can see from my posts in this thread), her point is that anyone who has had invasive cancer has the risk that they may have undetected metastatic cells in their body. While all the scans and tests and the pathology of the nodes might appear to be cancer free, that doesn't mean that we really are cancer free. In your case, having had a very large tumor, the risk that some cancer cells might have escaped into your body prior to the detection of your cancer is greater. Hopefully chemo killed those cells off but there is no way to know if it did. The assessment of your doctors is that even appearing to be 'cancer free', your risk of mets remains high enough that it warrants hormone therapy.


    Ultimately of course the decision is yours. This website might be helpful to you:


    Breast Cancer Treatment Outcome Calculator


    You can input the specifics of your age and diagnosis, and then see the difference that adding hormone therapy to your treatment plan will make to your long-term prognosis. I'd recommend that where it says "Display as" below the chart, you select "Pictogram". I find that's the easiest chart to interpret.


    Hope that helps!


  • almostthere
    almostthere Member Posts: 3
    edited October 2013


    Thanks for the info, Bessie!... I will def check into it!

  • newinab
    newinab Member Posts: 12
    edited January 2015

    I am not sure if I will regret it or not but yesterday I chose not to take hormonal therapy. I had talked to four different women who refused it and they were all fine over 15 years later. By taking taxoxifen it would have reduce my chance off reoccurrence by 5%. In saying that this decision is not for everyone.

  • hersheypassion
    hersheypassion Member Posts: 8
    edited January 2015
    newinab, I made the same decision to not do hormone therapy. We have the same diagnosis,Stage 1a etc. and I was diagnosed 11/21/2014. I'm considering looking into taking DIM, a natural plant derivative that suppresses estrogen without the side effects. Curious to see if others have tried it with success.....
  • skbrown
    skbrown Member Posts: 40
    edited January 2015

    I chose to take the hormones.  I did not have to have chemo, but I did radiation and now anastrozole.  1mg.  I was nauseated for the 1st week or so, but it has gone away. My score was 7

  • tgtg
    tgtg Member Posts: 266
    edited January 2015

    newinab and hersheypassion--I too was grade 1/stage 1/clean nodes and declined hormonal therapy after the rads. That was two years ago, and I am doing fine and have no regrets. Like newinab, the women I know with a similar diagnosis are all doing fine many years later, and the ones I know who did hormonal therapy for 5 years or more and then stopped all had recurrences after stopping. True, this experiential thing is not a very "scientific" study, but it was convincing for me with my diagnosis. As newinab says, though, this is a personal decision for each of us, and as my PCP said, "Just be sure you can live with the outcome [no pun intended] of your choice no matter what the outcome is." .

  • nancydrew8
    nancydrew8 Member Posts: 55
    edited January 2015

    My first diagnosis was 23 years ago - October, 1991. Stage 1, however the tumor was just under 2cm - node negative; ER pos. (they didn't do HER2 and all the other diagnostics back then) Lumpectomy/radiation. Oncologist advised chemo - I said, no. Surgeon advised no chemo given the slim, 1-2% survival and all the horrendous side effects. Took Tamo off and on for 3 months and became debilitated with headaches and muscle/joint pain. Stopped on my own accord. I thought I'd rather die than live my live with this level of discomfort.

    Tamo is an old, old drug and they still use it even with the same toxic side effects. Now they've gone and designed a drug(s) (a variation on the theme of Tamo) and so now they tell you...well, the symptoms are not as bad as Tamo, but you might still experience muscle/joint pain and Oh, yeah...it also causes heart problems. Go figure.

    During routine annual exam on November 5, 2014, Digital mammogram picked up a tumor on the radiated breast. Same surgeon who did the lumpectomy 23 years ago looked at the ultra sound and said it was a "second primary" , less than 1.5 cm and said it will be ER pos./ and HER2 neg. The pathology came back confirming his visual analysis Don't ask me how this genius of a surgeon could call it before the pathology was complete. Biopsy confirmed cancer; 1.2 cm; ER pos.; HER2 neg. Double mastectomy/no reconstruction on Nov. 12.

    Met with oncologist yesterday. No chemo but he did suggest Aromatase Inhibotors (Arimadex). I told him I would think about it but as of now, I've decided not to. I am waiting to hear back from my surgeon as I trust his judgment more than I do the Oncologist.

    Once I start Arimadex and it does spread, I can't repeat that medication again, much like radiation. I'm doing all that I can to eat well, exercise, supplements, etc., to take good care of myself, the rest is scripted.

    There's another aspect to taking these toxic medications that rob us of our quality of life; now you read so much about stress and emotional anger impacting our long term positive outcomes with this disease; that all the negativity in our lives compromises our immune system, etc., ....well, how can living with nausea, joint/muscle pain, day in and day out not cause stress, anger and depression and have it all not affect our immune system?

    I went 23 years the first time out with a larger tumor and if I go another 23 years, I won't even know my own name. If there's a spread, I'll just bank these hormone meds and use them if choose to. Besides, here's the bottom line. There's no rhyme nor reasons to this disease - unpredictable at best.

    Susan Love? My surgeon calls her a fema-nazi. I read her book 23 years ago and didn't have much of an opinion about her as she had so many contradictions in that book. Toward the beginning/middle, she talks about cure frequently; some 20 pages out, she then cautions the reader to be cautiously optimistic and that the only time you know you're cured of this disease is if you die of something else at old age. Contradictions make me nervous, especially in books written by individuals who specialize in that field.

    May God shine his loving, healing light on us all and shoulder us and give us courage to endure all this.

  • tgtg
    tgtg Member Posts: 266
    edited January 2015

    NancyDrew8--Amen to what you wrote!

    And here's another detrimental contradiction about these anti-hormonals to add to dealing with the added stress of ongoing joint pain (that ironically keeps people from exercising, as advised). At the same time that oncologists are talking about the importance of weight control for b.c. patients, they are busy writing prescriptions for anti-hormonal drugs that CAUSE WEIGHT GAIN! Go figure!

    Given my particular pathology statistics and prognosis, which are very much like yours, I decided to eat right, eat modestly, exercise a lot, rather than depend on a drug (that may have been manufactured in a third world country where "quality control" is only a word, not a practice), And 71 + 23 = 94--so if I'm lucky, maybe I won't know my own name by then either!

  • nancydrew8
    nancydrew8 Member Posts: 55
    edited January 2015

    Tgtg, You're absolutely right about the weight gain and not being able to exercise due to pain. Yet another disconnect in treating us responsibly.

    On the drive home, I was going over the conversation with this Oncologist and how he was asking me about family history of illness, etc. I mentioned to him that we had no history of cancer (although, how the heck would you know a 100 years ago), but we did have a strong history of heart disease; that my mother and all her siblings perished from heart disease. I also told him that I've had heart palpitations, that come and go, since I was a child.

    So, based on all that information, he would still prescribe a treatment that would compromise my heart.....at my age!

    Survival for us all is to stay on top of things and get educated. I heard somewhere this phrase: "that doctors are trained, not educated".

  • gemmafromlondon
    gemmafromlondon Member Posts: 138
    edited January 2015

    I was treated with Letrozole for three months prior to surgery (had to be held up due to other problem) and am about to have rads but there is no way on God's earth that I will take any of the hormone therapies again. It did shrink the tumour, but not only did I have hot flushes all day and night plus soaking sweats which lead to serious lack of sleep but one of my knees was so bad I could hardly climb a flight of stairs AND my blood pressure went completely haywire with bouts of tachycardia (racing heart). I felt totally exhausted. Surgeon knew all about this but still suggests I go back on one or the other after the rads! I would prefer to keel over now than live with misery I was in then. Life is a gamble and I may lose but in the meantime let's live it!

  • intothewoods2
    intothewoods2 Member Posts: 11
    edited January 2015

    I am giving strong consideration to refusing AI. I was prescribed Arimidex but have yet to take a pill. I am 65, dx 1.5cm IDC. ER/PR+, Her2 -. Tumor was 95% E receptor +. No node involvement...0/4 and clear margins. Oncotype score 20, no chemo recommended.

    I start Radiation next week. With a history of arrhythmias and hair loss, both of which are side effects of AI, I am very reluctant to start this medication. Yet the alternative scares me more...soooo torn.

  • Manu14
    Manu14 Member Posts: 153
    edited January 2015

    intothe wood: I have a very similar profile to yours with the difference that my oncotype was an 18 and I have no heart problems. I really didn't want to go on any anti-hormonal therapy but decided to try it. If I run into any major problems with it, I could easily see myself jumping ship.

    Maybe a talk with a cardiologist might give you a better idea of how mich of a risk an AI might be with your level of heart problem. And others who have been on AIs longer may chime in; but I dont think everyone has hair problems while taking them. What does your MO think of maybe waiting until you're done with radiation before trying an AI

  • intothewoods2
    intothewoods2 Member Posts: 11
    edited January 2015

    Manu14...I have decided to wait and do exactly that. My radiation starts next week and I have an appointment with my MO in mid Feb. I am going to discuss my concerns with her at that time. The rad will have to be it for now. The idea of foregoing AI therapy altogether doesn't seem so "out there" after reading some of the posts here, and is something I am still seriously considering. Thx for your input.

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