Need help to decide whether or not to go for Ovarian Supresion

Options
ann273
ann273 Member Posts: 209
edited August 2014 in Young With Breast Cancer

Hi all,

I'm 29 years old and was diagnosed with Stage IIIC breast cancer. I am done with Chemotherapy, Surgery and Radiation and have been on Tamoxifen for almost 6 months. I am doing very well on Tamoxifen with no side effects. My Onc threw in the idea of changing to Ovarian Supression with Aromasin quoting that based on a recent study there is a 3-4% increased chance of disease free survival with this option. I am aware that OS will put me in menopause which induces a lot of Side Effects, affects bone and heart health etc and am wondering if it is worth going with this option for that additional 3-4%. Unfortunately for me, since I am Stage IIIC it is a difficult decision. 

Any suggestions on what I should do?

Thanks!

Ann

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2014

    Ann, personally I'm pushing hard to give OS+AI a test run. The way I see it, the 3-4% increase is significant enough because what if I'm in that percentage? My oncologist is a bit hesitant because of the risks to my heart and bone health but I'll have my levels monitored and if it becomes dangerous, I'll just get off the shots and switch to Tamoxifen. I do hope to go off all hormone treatment in about three years to have a baby, after which I will evaluate whether I want to make any changes in my treatment.

    I do have a different cancer type than you though in that I have an aggressive Her2+ type and my recurrence risk is the highest in the first three years. So it seems like a reasonable investment in my future to be super aggressive now, even though I just came out of chemopause and I'm REALLY enjoying my estrogen right now.

    One thing very young women have to be careful of is making sure the shots actually shut down our ovaries because if they don't, the AI will be ineffective. So that would have to be monitored.

  • ann273
    ann273 Member Posts: 209
    edited August 2014

    Hi BAU,

    Thanks for responding and I'm glad you're doing so well post treatment! 

    My Onc did suggest giving it a shot and seeing how it goes. I suppose I could try that. He told me to give it a good thought. I get different responses from different oncs however. Some are of the opinion that considering how young we are, it may be an overkill to starve us of Estrogen. Another thing that worried me was, he said if we suppress the ovaries for years, they may not regain function again. That is my biggest worry. I also want to go on to have children and am very skeptical about giving up on the idea so soon. I really wish science was more definitive. Everything is a statistic/probability and Im so tired of it :(  Let me know if you have heard differently regarding regaining ovarian function after ovarian suppression. It would be comforting to see if many people in our situation have been able to do so.

    Secondly I have Luminal A type, low-moderate Ki-67, highly ER+ve cancer. So my risk period might be way longer than yours.

    Ann

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2014

    I've worried about not being about to regain ovarian function at the end of three years or so too. But Tamoxifen also has risks that could impact fertility too, like causing problems with the ovaries and uterus. And I assume that if our ovaries are shut down, we aren't losing eggs during that time period. So that could actually possibly benefit fertility. I also have always maintained that my biggest risk to fertility is dying. It's a real rock and a hard place situation, definitely. And you're right that you have to think more about managing your risk over a longer period of time. Not that I'm out of the woods after three years or so but my risk does drop significantly.

  • ann273
    ann273 Member Posts: 209
    edited August 2014

    I thought the same thing about how we don't lose eggs during suppression. It sounds so logical somehow :) I wonder if there are more Stage 3ers who had to deal with these issues around the same age as us.  3-4% is a huge gain at our stage and age.

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited August 2014

    hi ann,  my doc at mda told me this at my last visit in june.... 1st that I would be on tamox for ten yrs not 5 unless this supression and ai study showed significant results.  we talked about a few different studies but i think she said the supression ai study that had been released was basically data from two studies combined but neither study had been published yet.  weird huh.  anyway she said the official study they are waiting on will be presented at the san antonio breast conference in december.  after the conference all mda breast mo  docs willmeet and see if they are going to change their standard of care to suppressio/ai vs tamox.  personallyfrom experience with my region and mda docs,  they usually dont jump to change things based one one study unless the study is super great.  for instance there are a few tamox 10 yr studies with conflicting results .   the mda docs will tell me when they think the study was poorly run, which they said some of the tamox studies were.  

    when we discussed this in june at mda the take home message wax that if the study showed favorable data.  meaning significant survival over tamox they would change my treatment period.  if there was some improvement but it was minimal we would discuss my opinion on the matter since i am tolerating tamox well.  if the data showed no improvement we would stay with tamox.  personally i would wait to read the real studies being released in december before jumping into all the extra (rumored to be tbad) side effects from ovarian suppression. 


    ps.  sorry for the typin/grammar mistakes.  on a tablet.

  • rozem
    rozem Member Posts: 1,375
    edited August 2014

    minimacsmom - that is pretty much the EXACT same thing my onc at Dana is saying

  • ann273
    ann273 Member Posts: 209
    edited August 2014

    Thanks for the input minimacsmom and rozem, that helps! I will stay on tamoxifen till end of year and see if I want to change to OS + AI.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2014

    Ann, I think that's a good plan, since you are already on Tamox and tolerating it well. It's just a few more months until the Tamox only data is released and you'll have a better idea of where things stand. 

Categories