Has anyone refused hormone therapy?

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dobby
dobby Member Posts: 40

Anyone with IDC turned down hormone therapy due to the side effects and quality of life, especially if you are older and already suffer from arthritis. 

Concerned about the debilitating joint pain for someone over 80 with Arimidex.  I'm also very concerned about the increase in risk of stroke with the alternative drug tamox.

I guess I thought if you had a surgery to remove the cancer and perhaps radiation, that would be enough.  Any thoughts?

Comments

  • fifthyear
    fifthyear Member Posts: 225
    edited July 2013

    I did, due to family' history of bloodclot and stroke. Had lumpectomy and internal rad.

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2013

    dobby - I took Arimidex and had no issues with it but was switched to tamoxifen because I have osteoporsis...frankly I am too afraid NOT to take it even with the SEs which Tamoxifen has several. I am now 2 1/2 years out so I am just going to suck it up until the 5 year mark but I also think it is up to the individual. I have a friend who just passed her 5 year anniversary w/o hormone therapy so you never know. diane

  • Pessa
    Pessa Member Posts: 519
    edited July 2013

    You can always discontinue the drug if the side effects are not tolerable.  They should then resolve over time.  some people have minimal or no problems with AIs.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2013

    Is the patient a lady over 80? If so, she should not have much estrogen floating around anyway. I guess if the recommendation is to take it, she should give it a try. But, if she has any troubles with it at all, she should feel totally comfortable quiting. IMO, at 80 the MOST important thing is QOL RIGHT NOW!

  • peggy_j
    peggy_j Member Posts: 1,700
    edited August 2013

    I agree that the age of the patient can be an important factor, especially if there are other health issues. QOL is so important! When my MO discussed tamox she gave me my risk of recurrence and then said how much that risk would be reduced if I took tamox. For example, it someone has a 20% risk of recurrence in the next ten years, that means an 80% chance that it won't come back, even without taking drugs. Taking an anti-hormonal might cut that risk by 40-50%, depending in the tumor. And don't forget, recurrence simply means that the cancer came back. If it does, they may be able to do surgery and send the patient on her way. Good luck!!

  • dobby
    dobby Member Posts: 40
    edited August 2013

    I agree with you.  I looked up the side effects and told her about them and she decided no hormonal therapy.  She has osteopenia and doesn't want to have a spontaneous fracture from the drug.  She also has retinal issues so she can't take anything that would increase the risk of eye problems.  I so wish these drugs had less side effects. 

    We are still waiting on the full results so we don't know if she is er+ but either way, she won't go down that road.  

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited August 2013

    I'm 77, tried Aromasin for a few months, could not tolerate the SE's and quit the drug.  I have severe osteoporosis and have had many fractures. I also have atrial fibrillation which increased on Aromasin. I also found a study which was done on women over 70 and the results were that the benefits of a hormonal was very small.

  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2013

    dobby, I couldn't tolerate Femara (one of the aromatese inhibitors) and didn't want Tamox, so chose an alternative (natural) aromatese inhibitor.  I was also very concerned about bone loss with an A/I, and absolutely did not want a Bisphosphonate drug, although some women do fine with them.  When I later found a naturopathic oncologoist who did in-depth hormone testing, my estrogen levels were exceedingly low, which is probably why I couldn't tolerate the Femara.  

    So much depends on an individuals overall health and any pre-existing conditions.  Here are a few articles/studies that may interest you:

    http://www.healthcentral.com/breast-cancer/c/78/149941/70-strategies  

    http://healthomg.com/2011/09/16/certain-breast-cancer-drugs-linked-with-heart-risks-in-older-women/ 

    http://www.medscape.org/viewarticle/748708

    http://theoncologist.alphamedpress.org/content/15/suppl_5/57.full

    There was actually some research a few years back that concluded that A/Is may not extend overall survival for women over 70.  If I can find it, I'll stop back and give you that link.    But I also totally agree that, unless she's totally opposed to it, trying an A/I -- maybe even a half dose to start -- might help her make her decision either way.

    Deanna

  • dobby
    dobby Member Posts: 40
    edited August 2013

    Deanna- what AI did you choose and is it homeopathic?  Thanks for your links.

    My mother had a complete hysterectomy so she probably has very little circulating estrogen.  That makes it a little easier to justify skipping the hormone therapy.

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited August 2013

    None of the Aromase Inhibitors (AIs) are homeopathic. DIM is a homeopathic supplement.

  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2013

    dobby, I chose I3C.  By the way, homeopathic medicine refers to using a very small dose of something that, in a greater dose would actually produce the symptoms you're trying to eliminate.  So "homeopathic" isn't an accurate term for I3C, DIM or Grape Seed Extract, but they are all natural estrogen modulators that are readily available in most natural markets.

    Another thing you might consider doing is asking your Mother's oncologist or PCP to test her estrogen levels with a simple blood test they can order along with her next bloodwork.  While bloodwork isn't as precise as some estrogen testing, it would at least give you a reference point to know if she has enough estrogen to even be a concern, and might ease everyone's mind if it's as low as we suspect it will be.     Deanna

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited August 2013

    Thanks for the explanation Deanna.  I never knew the exact definition of homeopathic and always assumed it just meant "natural".

  • dobby
    dobby Member Posts: 40
    edited August 2013

    Well, my mom just found out her cancer is ER/PR- so she will see what the oncologist has to say.  I guess the hormone therapy is no longer an option.  I don't think anyone thought it would be the above so no one has mentioned chemo to her until now. 

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