Ooph or not to Ooph!

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mocame
mocame Member Posts: 669

I was dx early this year with multifocal DCIS, LCIS grade 2, ER+/PR- at the age of 38.  I decided to have a Bilateral Mastectomy with reconstruction.  I'm currently going through the reconstruction part.

My oncologist recommended no rads, chemo or tamaxifin.  I was tested for the BRCA genes and it came out negative even though my mom had bc 10 yrs. ago and there is extensive cancer throughout my mom's side of the family.

My onc said that even though it's my decision, she only recommends I get an ooph (not sure exactly how to spell it) in 5 to 10 years and not when I'm so young. 

My concern is that being ER+ and still having ovaries producing estrogen, that I'm at a higher risk of getting cancer again. 

 Has anyone gone through and had the ooph and if so, how are the side effects?  Has anyone else had to make this decision?

Comments

  • lisettemac
    lisettemac Member Posts: 213
    edited October 2008

    Hi mocame:

    I'm curious as to why your onc isn't recommending the Tamoxifen?  Is it because it was DCIS?

    I had a laparoscopic ooph.  After finishing chemo, my periods returned.  Doc suggested I would get greater benefit from chemo if I were in menopause -- either chemical or surgical.  He suggested Lupron.  But because I had a giant endometriosis on one ovary (not related to the bc), I decided to go with the ooph.  It wasn't a hard surgery -- outpatient, home by noon.  Tough getting in and out of a chair or bed for a couple of days, but otherwise not a lot of pain.  Back to normal activities in about a week or so.  Of course, I have hot flashes and some sleepless nights, but my gyn insists that "crashing" into menopause may be easier than perimenopause because these symptoms might not last as long.

    Good luck with your choices.

  • mocame
    mocame Member Posts: 669
    edited October 2008

    Lisettemac,



    Since I had a Bilateral Mastectomy and was diagnosed with DCIS, my changes of reoccurence are 1 to 2%. The side effects from the Tamoxifen are greater than the chances of reoccurence, so my onc and medical team suggested no Tamoxifen. They did say that I should stay away from soy.



    It's interesting, though, that my onc said that the symptoms of "crashing" (almost her exact words, too) into menopause at this age would be worse than starting to go through it naturally.



    Are the hot flashes and sleepless nights hard to deal with or just a nuisance?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    I was told stay away from soy also.  I was told ooph was an option, but I had endometrial fibroids really bad (uterus was size of 26 wk pg).  I elected a hysterectomy instead.  The "crash" into menopause was a walk in the park compared to my monthly cycles.  I was severely anemic (to the point of blood transf), so the decision was pretty easy for me.  I was out of bed the day after surg (and had to have 2 surgeries, I started hemorraging in recovery), I took it easy for about 10 days,didn't even walk out of the house till time to remove the staples, and was feeling good enough for a New Orleans weekend 2 weeks after the hystero.  The hot flashes were not too bad, and gyn put me on Celexa for mood swings and Restoril to help with sleeping.  I think DH likes me a whole lot better now!  The chance of recurrence and the ER+ had me pushing for a pemanent solution to the hormone issue.  Good luck to you!

  • mocame
    mocame Member Posts: 669
    edited October 2008

    Chelli, thank you for the information. It sounds like the actual procedure isn't too bad. Side effects are doable.



    Does anyone know the chances of recurrence if you don't have an ooph?



    If you "crash" into menopause, are you at a greater risk of losing bone density at an earlier age?



  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    I didn't have just the ooph though, I had a complete hystero, so I'm thinking that a few days of down time would be the norm.  I'm sure that bone density is an issue, but it was such a small one that we never discussed it.  I guess the BC is the #1 right now.  I also have degenerative disc disease and spinal stenosis, so I'm sure the bone issue will be visited after the tx for this is over.  I know that my gyn, breast spec, and onco all said hormone production WOULD be stopped, whether by meds or removal, it had to be done, no question about it.  And they all did say the best choice was removal.  I know some are worried about having children after, I did not have that issue to ponder, so I didn't fight that decision.  I had been having so many prob with the fibroids, I was greatful to have the hystero. 

  • lisettemac
    lisettemac Member Posts: 213
    edited October 2008

    mocame -- I think my GYN's point about crashing into menopause is that some women have perimenopause symptoms for up to 10 years!  She said you could flash for that entire time, whereas women who go into surgical menopause usually have the symptoms hot and heavy (no pun intended) for a while and then quit.

    So, I started Tamoxifen many moons ago and had hot flashes, sleepless nights and some mild nausea.  I switched to taking the drug at night and it helped with the nausea.  Hot flashes/sleepless nights were starting to subside (after a couple of months) when I had the ooph.  About 7 days in, the hot flashes picked up dramatically.  I still have them relatively frequently (and I had my ooph in April), but I've also switched to Arimidex, so it's hard to say whether they would have subsided due to the ooph if I hadn't switched drugs.  They are slightly annoying, but aren't making me miserable.  I don't even really sweat from them, I just feel uncomfortable.  And, it's covers on, covers off all. night. long.  That being said, I declined my Gyn's offer of Effexor (and her suggestion of meditation) and will tough it out.

  • lisettemac
    lisettemac Member Posts: 213
    edited October 2008

    Oh, should have said that I'm not sure there's a difference in bone density issues depending on whether you go into surgical vs natural vs chemical menopause.  I think the issue is more going into menopause early.  So, I'm 41.  Average age of natural menopause is 51.  So I have an additional 10 years of no estrogen -- which just ups my risk of osteoporosis and heart disease.  But I don't think that my increased risk is due to the method of reaching menopause, just the timeframe, kwim?

  • Carmelle
    Carmelle Member Posts: 388
    edited October 2008

    I was 38 with bilateral BC...right side lots of DCIS, multiple invasive tumors, left side just DCIS.

    I was also Grade 2 and er+ and pr-.

    I did my research on my age and stage and specifics.

    ER+ and PR- may not be the best combo for Tamoxifen according to some studies.

    I had later stage and lymph nodes, did bilateral mast, rads, and chemo.

    After my periods did not really cease during chemo and I read some more.

    My Onc felt that ovaries out would be best for me. He did not feel I would need any more drugs but he did agree that he would be more comfortable if i took Arimidex as i was now eleigible being in full surgical menopause.

    I have been lucky with side effects, not so bad compared to the hell of chemo. Now I am finishing 5 years of arimidex this feb and need to know if I will continue.

    Make your decision based upon you and your dr's recommendations.

    Oh and my bone density was very high going in and remains at high-normal.

    Michelle

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    I think the bone loss is directly related to  the overall loss of estrogen, regardless of how it is lost (naturally, medically or surgically), and it progresses over time. I never went thru natural menopause--had "medical menopause" sort of from tamoxifen, then a surgical menopause--TAH/BSO for large ruptured ovarian cysts. The SEs from surgical menopause are immediate and intense from the plummeting estrogen levels. My SEs subsided over time (the 1st year was the worst), but I still have mild hot flashes, insomnia and generalized achiness and it has been 3.5 years since my surgery. It may be due to the tamox, but I'm finsihing up with that  in about 10 days, so it will be interesting to see how I feel than.

     The important thing is to take calcium with vit D (make sure it contains magnesium and take twice a day for better absorption)  and do weight bearing exercises.

    Anne

  • BethNY
    BethNY Member Posts: 2,710
    edited October 2008

    You have to weigh out the risks vs benefits for each...

    I'm really surprised your onc recommended no Tamoxifen, and your ovaries out.  I don't think it would hurt to get a second opinion.

    I opted out of Tamoxifen, due to the risks not outweighing the benefits for me personally- however, there's no way I would have an oopherectomy unless I was BRCA +.  I would take Tamoxifen first, which would still allow me to have periods, and maintain estrogen in my body (since I have a long line of osteoperosis in my family) but it would bind the estrogen like a lock and key, so it doesn't fuel any cancer cells.

    I know that during chemo, I went into chemopause, and it was the worst experience ever.  I was 26 years old, and the hot flashes were so intense I couldn't sleep at night, couldn't breathe, would sweat through layers of clothing-- my onc explained that menopause is a shock to the system at that age-- and thankfully 6 weeks after chemo my period returned, and has been normal ever since (I'm now 4 years out).

    I know it's a huge decision- so I think you may benefit from a second opinion.

  • mocame
    mocame Member Posts: 669
    edited October 2008

    The reason my onc didn't recommend Tamoxifen is because she said the side effects would be higher than the % chance of recurrence. 

  • BethNY
    BethNY Member Posts: 2,710
    edited October 2008

    yet she recommends an oopherectomy, when you are BRCA negative?  That's the part that's got me a little confused.

  • mocame
    mocame Member Posts: 669
    edited October 2008

    I want to get in to see my gyn to talk about this but I can't get in for another 2+ months. Maybe she can give me more information.

  • ChocolateLover
    ChocolateLover Member Posts: 363
    edited October 2008

    hi gals,

    i was diagnosed at 29 ys and am now 38.  For the past 7 yrs my disease has been "stage 4". My med.onc has wanted to do the oopherectomy for the past 7 years.  I did go through medical menopause with chemo 8 yrs ago, then regained my flow until I started taking an injection called Zoladex 7 yrs ago that essentially shuts down the ovaries anyway. So why have them removed? lower drug costs. They injection is working, I haven't had my period for over 7 years. The symptoms are the same: hot flashes, vag. dryness, some weight gain, etc. so I AM in menopause. But I still have all my parts because you never know what's gonna happen in the future.  just something to think about.  :)

  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited November 2008

    I was just diagnosed at 41 and as soon as my chemo cycles are over I ma having at least an ooph, maybe everything out.  I am er+ and I do not want the risk that comes with still having my ovaries if I am no longer having kids.  I figured that the chance of my period continuing is too high and if I could have surgery during my chemo, I would get them out tomorrow!!

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