No Recurrence If We Take Aromatase Inhibitors?

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Hi my Sisters on this Journey,

I need to know. Are we being led to believe that if we take our AIs we won't get a recurrence?

Please tell me your thoughts, what you've been told, etc.

Thank you ✌ and 💖,

Hippie Girl

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2017

    Hippie girl,

    I am sorry to say that there is no medicine or therapy that will guarantee you won't have a recurrance. Has your oncologist spoken to you about how much an AI will reduce (percentage wise) your recurrance risk? If not, this needs to be part of your next conversation. Take care.

  • hippiegirl
    hippiegirl Member Posts: 31
    edited August 2017

    Hi exbrnxgrl,

    Thank you for your quick reply.

    Yes, I had a feeling we have no guarantee with this, but needed to hear what you guys thought and I appreciate your input.

    I haven't had a chance to ask my oncologist this question yet because I haven't been to my second opinion onc which I'm planning on going to see just as soon as I get my new healthcare plan processed.

    Do you believe that I had my lumpectomy on April 27 and STILL haven't started radiation? I did have a radiation consult, but due to healthcare authorization problems, the treatment itself hasn't begun. It should be any time now since I've changed to a new health care plan.

    So you see I'm stressing this as well as the probable AI SEs.

    Again thank you for your words. Hope you're doing well on your own journey, hon.

    HG


  • Kicks
    Kicks Member Posts: 4,131
    edited August 2017

    There are no guarantees of anything in life!

    I'm 8 yrs post DX and 7 1/2 yrs on first Femara and then letrozole when it became available in the generic form. Still NED! For IBC the average is 1 out of 4 will make it to 5 yrs post DX. I have (and 3 yrs plus). I will be on it 'forever' which is fine.


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2017

    Hi, hippiegirl - it's horrible that you've had to wait so long to start radiation - and rather concerning, too. In the meantime, please don't add to your stress by worrying about side effects from AIs. There really are women who have minimal side effects, or a range of experiences that they are able to manage effectively. In my case, I had almost no side effects for the first 18 months, other than a couple of transient issues. I then went through a period of increasing problems, switched drugs back and forth, etc. and am now just about back to where I started. I would not say I'm completely free of issues but I can certainly live with them. This isn't to say that I wouldn't LOVE to be able to walk away from letrozole :) but that my experience has been, and continues to be, fairly decent.

    Please don't go by what's posted on here - your experience could be very different. Don't sweat it until you get there!

    Good luck moving forward w/radiation, etc.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2017

    Hippie girl, I have to say you have one of the better dx on these boards: not aggressive, hormone +, no node involvement, and small tumor size.

    Because of my status, my MO tells me I'm high risk and will have to stay on an AI for 10 years and maybe more. As for side effects, I have a few joint issues in my hands from time to time, and my left hip aches from time to time. Yoga and regular exercise--running, weight machines, walking--seems to help this side effect a lot.

    I believe that my MO truly thinks that my recurrence stats are lowered a lot just by taking the AI I'm taking--Aromasin.

    But there are no guarantees that taking an AI completely prevents recurrence. To look at it another way, I am also exercising, keeping my BMI below 20, don't smoke, eat plant-based organic, and meditate because I suffer from anxiety. I take a daily aspirin, make sure my Vit D levels are good-my MO checks them yearly. I also tend to drink too many glasses of wine (more than 3) on occasion--due to my anxiety--but I try not to do that very often at all, perhaps a few times a year. That's my only not-so-great habit that I'd like to do less of in the future.

    I think that every positive lifestyle choice we make adds to less recurrence, and any lifestyle choice we make that is negative--increases the chances of recurrence to a degree-mostly a small one though, if you read the research.

    Does it all add up to 100% guarantee? Nope. But we can feel good about adding to our potential for less recurrence by simple lifestyle choices that are good for us.

    My 2 cents.

    Claire in AZ

  • hippiegirl
    hippiegirl Member Posts: 31
    edited August 2017

    Hi Claire,

    Your 2 cents is worth a lot to me and I thank you very much for it.

    HG

  • hippiegirl
    hippiegirl Member Posts: 31
    edited August 2017

    Hi KB870,

    I'm post menopausal. Thank you for sharing yourself. Yes, you helped a great deal.

    HG

  • hippiegirl
    hippiegirl Member Posts: 31
    edited August 2017

    Hi Hopeful82014,

    Your comforting words are calming me down. I'm very grateful.

    I know there's no 100% guarantees in anything, but you are doing a good job of convincing me to at least give the AIs a try. I'm leaning that way...

    HG


  • hippiegirl
    hippiegirl Member Posts: 31
    edited August 2017

    Hi Kicks,

    That's awesome that you're doing so well, hon! I wish you NED forever.

    I agree nothing is 100% guaranteed.

    Thank you for your thoughts.

    HG

  • dtad
    dtad Member Posts: 2,323
    edited August 2017

    Hippiegirl...unfortunately you can have a recurrence while or after taking anti hormone drugs. IMO if there was a guareentee we would all take it despite any SEs. So we have to make our own informed decisions hoping for the best and knowing that no one can really predict who will have a recurrence or not. Good luck navigating this complicated disease

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited August 2017

    I echo what Claire in AZ says, although I did 5, not 10 years and Anastrazole. It was quite do-able, and I made a point of lots of exercise, though not nearly as careful with my diet as she us. I also take aspirin on a daily basis, which appears to have a major benefit in observational studies, with clinical trials now underway. The big one is exercise, but I should also point out that something we need to be doing regularly. Claire hikes, and I cycle/ski. I also hike, but only a few times a year. I do make a point of walking/jogging at least 3 miles every single day (when not on my bicycle or skis), plus I life free weights and do a series of crunches on week days.

    I did have some achiness during my 5 years of AIs, and I particularly remember the time I was on a skiing trip with the guy I was dating, and it was 4 miles back to the car. My left hip was killing me, and I got a blister on my right heel!!! I was happy that mostly downhill, and I made it back. Still had a fabulous time.

    I would plan on this being something you need to do for 5 years, that perhaps requires upping your exercise game. We talk about the health benefits of exercise, but let me also mention looking fabulous in leggings, spandex, and all sorts of clothes. Not that bad. Good luck! - Claire 

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    I thought the five years was arbitrary number.

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