Stopped taking hormone therapy due to severe depression

Options

Hi, I'm looking for help and advice about my situation. I found my lump 3 weeks after my hysterectomy/ oophorectomy this year. I've had genetic testing (negative), and a full mastectomy with reconstruction. I'm ER+/PR+. My oconotype score was 15. I started taking Arimadex, but after a few weeks the headaches and spine pain were just too much so my oncologist switched me to Femera. Within a day or 2 I could feel an undertow of depression building, and by a week I was suicidal. I switched back to Arimadex, but it didn't help. I do have a history of depression, but not this bad. I had the Depo Lupron shot for Endometriosis last November, and that flipped me out pretty badly, but not to this degree. I have a lovely life - 5 year old daughter, great husband, own house, etc. I meditate, do yoga, spend lots of time outdoors, take St. John's Wort, see a therapist, etc. On the down side, there's the cancer, obviously, and my dad walked out on me 2 weeks before the mastectomy and has cut me off completely, which I have been struggling to deal with too. However, I do want to live! I have everything to live for, my daughter especially.

I spoke to my oncologist almost 3 weeks ago, and explained the situation. He told me to stop the meds for a couple of weeks whilst I had my last breast reconstruction surgery, and then go see him. I went yesterday, wanting some facts about how much benefit I'm really getting from hormone therapy vs. feeling suicidal. He threw his hands in the air and said he didn't know, just that I'm too young to 'throw in the towel' (I just turned 40) He said there's no data for recurrance rates for women who quit their meds after surgery. Surely this isn't right? Does anybody have any more info about this?

Comments

  • Obxflygirl1
    Obxflygirl1 Member Posts: 377
    edited August 2015

    your oncotype score should have recurrence rate with or without hormone blocker. Hope this helps

  • Ridley
    Ridley Member Posts: 634
    edited August 2015

    Shelly-zen - sorry to hear what you are going through. I think you should consider a second opinion. Also, does your hospital have a psychiatrist for its oncology patients? I saw one from my hospital and she was great. I ended up adding Effexor to my list for meds for the SEs from tamoxifen re: hot flashes and mood changes. Has certainly helped me. Good luck.
  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2015

    I agree with Ridley - you should have rec'd a referral to someone in psych onc. There could be a nurse practitioner who makes a specialty of this and can prescribe an antidepressant. St John's wort may be OK for certain people but often extra help is needed to regain proper biochemical balance in the brain. Your (talk?) therapist might also have an associate with whom a consultation could be scheduled for medication adjustment.

    There are calculators like CancerMath that you can find on line which give survival statistics using various criteria however no tool like that can predict what your individual outcome will be. It is difficult to make decisions having recently gone through so much trauma so be easy on yourself. Come back and let us know how things go.

  • labelle
    labelle Member Posts: 721
    edited August 2015

    From what I've read the risk of reccurrence w/out hormonals is roughly doubled. For example, if a person's risk is 10% with, it's about 20% without.

    My onco had no problems sharing my own recurrence rate both with and without hormonals. The fact that yours is not willing to do this makes me think you need a new oncologist-one who is willing to be honest with you. I HATE it when our doctors withhold information from us. This is info we all need to make a good decision about the pros and cons of homonal blockers, how much benefit we as individuals might get from using these drugs. Without knowing how much we might benefit from their use, how can anyone make a good, informed decision?

  • tgtg
    tgtg Member Posts: 266
    edited August 2015

    shelleyzen--What labelle says about the recurrence prediction without tamoxifen is exactly what the MO I saw told me: my oncotype of 12 predicts a recurrence chance of 8% with anti-hormonals and 15-16% without it (predictions based on stage 1 and stage 2 tumors.) Like labelle's MO, mine was totally honest, and concurred with my decision to decline all anti-hormonal therapy, saying that at my age (then 71) and with my stage 1a/grade 1 tumor, my chances without it are still quite good. She and I had also had a frank discussion about how much is known about recurrence among those who never start anti-hormonal therapy or stop it after a while. In short, nothing is known--and she opined that no drug company really wants to fund research that can hurt its bottom line by leading more people to decline or stop taking its product. The business of the pharma industry is to sell more and more drugs, including drugs to counteract or minimize side effects of the first one prescribed, after all!

    And kayb is on target about us being partners with our physicians in the decision-making process. I don't know how old your MO is, but he sounds a bit like a relic of an earlier age in medicine, a throwback to the old, paternalistic "doctor knows best" type who believes that patients shouldn't ask questions and should just do as they are told. You might do well to seek a different MO, one who isn't of the "my way or the highway" type who is not open to discussion. Perhaps you can get recommendations from friends who have seen other MO's, or even your primary physician (mine actually gave me an "avoid this MO" recommendation, as well as a very positive recommendation of the one I saw.) Given your situation, you really need a listener and a discussant, not a dictator, as your physician partner! Good luck to you as you move ahead smoothly. TG

Categories