oophorectomy

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samcid
samcid Member Posts: 19
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  • samcid
    samcid Member Posts: 19
    edited January 2008

    Hello to all and good thoughts, as well...

    New to the BC Sisterhood as of 11/2. It looks like this might be a good place to ask questions of those who are in the same boat. 

    Been researching my little butt off about how to deal with this nasty little bugger and want to have my ovaries removed instead of doing chemo to shut my ovaries down -- yep, ER+.

    This is not a form of adjuvant therapy used often in the US, more so abroad.  Has anyone done this or have any thought on the subject???

    Many thanks!

  • newter
    newter Member Posts: 4,330
    edited January 2008

    I had an oophorectomy but not in place of chemo.    I have not heard of this and it was not an option for me (how wonderful if it had been)  because I was stage 2 with 2 positive nodes.  This is a very interesting question.  I am sure you will receive some responses soon.

  • samcid
    samcid Member Posts: 19
    edited January 2008

    just curious, and if you don't mind, how old were you when you had the sugery and, if premenopausal, did you have bad hot flashes and the such?

  • Lolita
    Lolita Member Posts: 231
    edited January 2008

    I have not had an oophorectomy, I did have the genetic test and an ultrasound to determine if I had any grounds for having one, rather than taking the tamoxifen. Both tests were negative. When I looked into it some more, it seemed that there could be serious problems with bone loss down the road since I am only 42, so, for now, I've decided on the tamoxifen which has other problems but is gentler on the bones.

  • samcid
    samcid Member Posts: 19
    edited January 2008

    Yes, that is the down side of the oophor, I am soon to be 43, so I understand the concerns, but I do know that I can do bone building exercise and manage my diet to get the intake of vits for good bone density. 

    Tamo scares me more.  Having done a lot of research on the side effects and where the drug originated and this is why I am opting for the surgery.  It is quite possible that I am a BRCA carrier given having an aunt diag with the same cancer at a young age, too.  If this is so, then I am at a higher risk for ovarian cancer....

    these decisions are overwhelming and i have great support from my family, but they are not in my shoes...  if you know what i mean. 

  • 2up
    2up Member Posts: 1,358
    edited January 2008

    having an ooph is secondary and optional to chemo.

    i'm having a total hyst on feb 21st ........ after 8 months of chemo, bilateral masts and tamoxifen ............. IMHO, i don't think that an ooph is a satisfactory alternative to chemo ........... in my limited learnings, an ooph/hyst is a 'post treatment' neccesity.

    i have had a harder time with the hyst issue than i did with the masts, but being 100% ER positive and not having my ovaries shut down by chemo has led me to this next step.

    ...........your post is kind of vague therefore i can't respond effectively, but do not think for a moment that an ooph will halt your cancer if chemo has been advised ........... an ooph 'instead of chemo' would be unheard of in my neck of the woods.  an ooph will not kill existing cancer cells floating around in your body ........ chemo might not either, but in my mind having an ooph 'instead' of chemo is simply 'ill informed'

      

  • newter
    newter Member Posts: 4,330
    edited January 2008

    I just had my oooph this past summer when I was 43.  I opted for it because I am BRCA 1 positive and wanted to reduce my chances of more BC or a recurrence.  I have a  little bit of warm waves at night if I wake up.  The only really bad hot flashes I had were when I was on my first 4 chemos of Adriamycin and Cytoxan in the summer of 2006.  I did not think the hot flashers were that bad but I know some women who have horrible hot flashes.  There is medicine to help.  My periods stopped while on chemo and never returned so I am not sure if I was truly menopausal or not.

    Also, I do not think I have suffered any personality changes from all this.  In other words, I am not any more bitchy than I was before.  lol

  • samcid
    samcid Member Posts: 19
    edited January 2008

    a little more info

    .7mm tumor, lumpectomy, clear margins, no nodes, mod-diff, er+ 16% & pr + 56%, her2-, 18% chance systemic recur score.

    onco suggested tamo for 40% reduction add chemo for 59% reduction of recur.

    i asked him about the ooph -- what i have been reading is that the researches feel the primary reason for chemo being effective is that it is a chemical way to shut down the ovaries therefore not producing the estrogen necessary to feed the cancer.

    he seemed to think this was a reasonable approach as long as i would add AI's as part of the treatment.

  • samcid
    samcid Member Posts: 19
    edited January 2008

    thank you for the grin!

  • caaclark
    caaclark Member Posts: 936
    edited January 2008

    I did chemo, rads, Hyst. and tamox.  I have had mild hot flashes but was already having them during chemo.  I have never heard of an ooph instead of chemo but for me I had to do everything-pos. nodes, er+.  Besides the hot flashes (about once or twice a day-about an hour after taking the Tamoxifen) I really have had no other side effects from it.  In fact, sometimes I wonder how it could be working if I am not suffering from side effects.  I was worried too about how I would react post hysterectomy-especially with my husband-but I see no difference at all.

  • newter
    newter Member Posts: 4,330
    edited January 2008

    If I had been given this option, I would have jumped at it and probably done anything to avoid chemo.  Lucky for me, I got chemo AND an ooph.  BTW mine was 100% er and 60% pr positive.  Her negative.   Keep checking, hopefully someone else will have some info.

    Have you checked out the treatment categories on this board?  You may want to post there also.

  • samcid
    samcid Member Posts: 19
    edited January 2008

    Thanks, i was just poking around to see what else was on the site.  one question i have not found an answer to is just how the percentive of positivity fits into all of this...

    can anyone fill me in?

  • newter
    newter Member Posts: 4,330
    edited January 2008

    I do not really know the answer to that.   I think it indicates how strongly the tumor feeds off or tends to grow because of the particular hormones.  In my case, shutting down estrogen was very important. 

  • samcid
    samcid Member Posts: 19
    edited January 2008

    makes sense and wish i could find this info somewhere...

    will have to ask my onco...  i think it is important to understand when making decisions about this kind of stuff....

  • samcid
    samcid Member Posts: 19
    edited January 2008

    many thanks to all!

  • Diana_B
    Diana_B Member Posts: 287
    edited January 2008

    I was diagnosed with a recurrence on November 22 and given a chemical ooph (zoladex) and AIs.



    As a result, the tumour under my arm is shrinking. This would suggest to me that an ooph can do the same work as chemo. (It shrunk considerably even before I started the AIs)



    In my case, they decided on the hormonal approach as chemo was clearly not a long-term solution. (I had been given FEC, and then when that didn't work, taxotere, which did work)



    However, my cancer is 90% ER+, while yours is only 16. Have you asked your onc about the effectiveness of a hormonal treatment ie. ooph in your case? I think it would be relevant.



    On the other hand, I note that you are much more PR+. I'm PR negative and have read that more PR negative women don't respond to tamoxifen, as in my situation. I don't know if this means that the corollary is true ie. that tamoxifen is a good medicine for PR+ women.



    All this being said, I wish I did not have to be put into menopause (I'm 42) and that I could continue to take tamoxifen and be pre-menopausal as before. I did not have any side effects from the tamox, after the hot flashes stopped 4 months into it, and found it very tolerable.



    One of the things that I find most distressing is that an early ooph can apparently increase your chance of dementia down the road.



    A few more points - is "mod-diff" a reference to the grade of the tumour? Also, chemo will not necessarily shut down your ovaries. Mine came back after 13 months and I know this is not unusual.



    Btw, the hot flashes from ooph and AIs have not been too bad so far.



    Sorry if this is convoluted and hope it's of some use to you. It's not an easy decision you've got to make. In some ways it was easier for those of us who were told that chemo was absolutely necessary.



    Darya

  • newter
    newter Member Posts: 4,330
    edited January 2008

    Darya, 

    What is this about and early ooph and dementia? I have not heard this but I did not go looking either.

  • Diana_B
    Diana_B Member Posts: 287
    edited January 2008

    Hi Newter,



    Yes, I was pretty depressed to read about it. Here's a link to the story from the Canadian Broadcasting Corporation, but if you google it you can read about it elsewhere too.



    http://www.cbc.ca/health/story/2007/08/30/dementia-estrogen.html



    Hard to know what to do - I take salmon oil daily for the omega 3s, as they've been linked to alzheimers. It's tiresome taking all these supplements and thinking about all this stuff, but I'm motivated re. the salmon oil because it also makes my skin really nice!

  • newter
    newter Member Posts: 4,330
    edited January 2008

    Thanks for the info, I will check it out. It would be so nice to find out, once in a while, that something I did had an unexpected POSITIVE side affect instead of negative.  Yikes.

  • Diana_B
    Diana_B Member Posts: 287
    edited January 2008

    I know what you mean, Newter.



    However, I note that your diagnosis was similar to mine - small, aggressive tumour, already in the lymph nodes, highly ER+ (in addition to the BRCA1in your case). I imagine your risk of recurrence is high, and while you can never be sure, you might have done a very smart thing by having the ooph.



    I think I had this tumour for a while - thinking it was just a bit of scar tissue - but it went crazy and started to grow rapidly after I got my period back in August.



    I remember that day I got my period back. I was dancing and singing. And then the cramps and the heavy feeling started and I thought "Oh s--t, not this again!". So that is ONE positive thing about the ooph I think.



    Just a thought,

    Darya

  • newter
    newter Member Posts: 4,330
    edited January 2008

    Hi Darya,

    My period never did come back and I really do not think I was perimenopausal before chemo.  I do not miss it but I do miss the youth and the ability to reproduce that comes with it.  Sigh.  The gift that keeps giving.

    I am hoping that having an ooph was one of the best decisions I have made.  I guess the next procedure I will be thinking about will be a bi-lat mast.  I only had a lumpectomy and I am having annual MRIs and seeing the surgeon twice a year.  One more thing to look forward to in my "Journey"

    Newter

  • newter
    newter Member Posts: 4,330
    edited January 2008

    Darya, your were dx'd on my birthday, 11-22

  • paige-allyson
    paige-allyson Member Posts: 781
    edited January 2008

    I am 48 and on an AI (Femara) with Lupron Depot every 3 months for ovarian suppression to ensure I stay in chemopause/menopause. Is there any additional benefit that I would get from ooph that any of you know of ? I am going to ask my onc about this in Feb. but would like any opinions/info that you could offer. On the dementia issue- not to curse myself but here's hoping I get it- like when I'm 90!

    Allyson

  • caaclark
    caaclark Member Posts: 936
    edited January 2008
    Yeah, I sort of feel like dementia is the least of my worries. Smile
  • gsg
    gsg Member Posts: 3,386
    edited January 2008
    in sept 2006, i had an ooph at the same time as my lumpectomy (i had already finished chemo)...i did it so i could take arimidex.  i'm happy with the decision.
  • samcid
    samcid Member Posts: 19
    edited January 2008

    Hi all,

    The dementia thing is certainly worrisome, from what I have been reading it seems to be an age related thing.   Some reports are saying younger <39 women are most at risk and any one <50 are at risk.  The clinical trial I read was somewhat spurious in how they followed the women up.... (http://www.neurology.org/cgi/content/abstract/69/11/1074)

    Translated in another article: out of the number of participants they found that 105 of the women w/ooph had dementia and 98 w/o ooph had dementia.  Seems to me not a huge difference.

    The idea is that estrogen does a lot to help with brain health and the research suggests that for these women taking HRT can help -- but, it doesn't do us any good does it!!!! Undecided

    It also seems to me that if this was a really prevelant problem; there are a lot of women out there who have had surgery like hysto, etc. for many, many years, but it doesn't seem like there has been a real increase in the number of women diag'd with dementia.

    And, like everything thing else that goes along with this cancer deal, there are lifestyle changes that can be made to ease the impactof treatment.  So, use your non-dom hand to brush your teeth, practice math tables, learn a forgein lang, just keep the brain moving -- this has proven to offset dementia in everyone!

    going to pose the dementia question to my onco and surgeon -- will pass on their opinions!

    good thoughts to everyone!

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited January 2008

    An ooph may be one good way to fight bc, but I don't think it is correct to say it replaces chemo. It works differently.



    There are numerous long term health effects from early menopause. For many, it is worth it but with your cancer caught so early, it seems like overkill to me. Why don't you try tamoxifen and if you have a horrible experience with it, you can switch? I've been on tamoxifen for almost three years and am doing great.

  • samcid
    samcid Member Posts: 19
    edited January 2008

    I think because tamo scares me.  I am not one to trust the drug industries in the first place.  Tamo has a troubled past -- it seems that the riskes associated with tamo; blot clots, uterine cancer, cataracts, etc are futher out of my control than the possible detriments of ooph - I can do weight bearing exercise for bone density, eat healthy for the heart and cancer, work my brain to ward off dementia -- lifestyle changes that can have a direct effect on the cons.  Not so sure I could do as good a job against the tamo risks.

    But, I certainly have to question my own risk assessment.  And, am doing so now.  I know tamo is the 'gold standard', but what is really driving this -- efficacy or drug companies? Why stop loking at ooph as an effective treatment when it has shown to work in other countries and for the last 100 years since its discovery? It seems like ongoing research should be done on ALL fronts when any risk is taken in fighting this disease. 

  • Diana_B
    Diana_B Member Posts: 287
    edited January 2008

    I guess I think about dementia because I go to my boyfriend's father's nursing home a lot and a high percentage of the people there have dementia (including my boyfriend's father), so it is a part of my life. My boyfriend is always repeating things over and over to his dad in exasperation. I suppose, though, I'll be lucky to live to an age to get dementia.



    Newter, that's my recurrence diagnosis date. I put it there because it reflects where I'm at emotionally ie. newly freaked-out. We were actually originally diagnosed around the same time. Sometimes I wish I had asked for an ooph earlier. My onc didn't suggest it, but I know that my body produces a lot of estrogen because I can actually feel it.



    Samcid, you seem to have more energy and optimism than I do to deal with all this stuff. More power to you!

  • samcid
    samcid Member Posts: 19
    edited January 2008

    Darya,

    I can certainly see why dementia would give you pause.  I have no personal, fingers crossed, experience with this, but can see how it would be frightening and concerning.

    I think I need to feel like I have some sort of control in dealing with the cancer, otherwise I feel like I would fall into a state of misery.  Focusing my attention on what I can do gives me a feeling of power over the cancer and the ability to keep my attitude in the positive.

    I am a worry-wort by nature, so I am struggling with some of the issues of looking at a non-conventional approach to adjuvant treatment.  Have much to stil sort out.  Just recently made the decision to go ahead with the RT after the lumpectomy -- risk calculations are peacefully in my mind.  I have some time to still think about the hormomal approach.

    BTW - love your picture!  Great lighting!

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