Hormonal therapy for DCIS post ooph?

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3monstmama
3monstmama Member Posts: 1,447

sigh..should have posted this about a month ago but oh well. 

In late November my mother (82) was diagnosed with advanced ovarian cancer. 

Prior to her diagnosis, I had been viewing myself and my DCIS as a fluke in the cancer family tree.  Alas!  In going to the doctors with my  mother, I learned that ovarian cancer, fallopian cancer and peritoneal cancer are all the same cancers AND that in her grandmother's generation 4 siblings were dead before 50 with what mom remembers as stomach cancer or something like that.  Since it was a sister and three brothers, of course my brain immediately rushes to ovarian/peritoneal cancers. . . .

Swell.   Off to a DaVinci ooph go I.  Merry Christmas to me!  Now here I sit, sans ovaries getting ready to go see my oncologist about whats next and I realize I'm not even that sure what the heck to ask.

I have been on tamoxifen since August 2010.  I did not have many side effects or problems with it.  Am I likely to be told that I will stay on tamoxifen or will they switch me to an aromatase inhibitor?  I confess, I read the SEs of those things and get scared.   My mother & grandmother definitely had osteoporosus (sp), I can't afford cognitive issues in my job, etc etc etc.

Has anyone else had this spiffy experience?

Comments

  • LWA
    LWA Member Posts: 39
    edited January 2012

    Hi, 3monstmama--

    I'm afraid I have not had this experience. My semi-educated guess is that no ovaries = menopause, for all practical purposes, and therefore maybe you would switch to aromatase inhibitors? Please let us know what your oncologist says after you see him/her.

    It's helped me a lot to poke around here and the Internet in general so I can go to appts. with a list of questions, but don't forget that if you realize later you forgot to ask something important, you can always give the person a call and ask more questions.

    Good luck!

    Linda

  • Mary22
    Mary22 Member Posts: 779
    edited January 2012

    I started on Tamoxi and had miserable SE, Since I was BRCA2+, I did have an ooph. I was switched to Arimidex and Zometa infusions. No cognitive SE, just joint  and bone pain!!!!

  • cycle-path
    cycle-path Member Posts: 1,502
    edited January 2012

    mama --You can take Tamox whether you're past menopause or not. It's never been entirely clear to me why some post-meno women are on Tamox and some are on AIs, but I am post-meno and am on Tamox. AIs are not being considered for me due to osteoporosis and osteopenia.

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited January 2012

    So after my oncologist got done with her happy dance for my getting rid of the evil conspiring ovaries (I know they were just sitting in there planning to do me wrong but I got to them first!) she said that I would be staying on tamoxifen but that I needed the BRCA testing and that we would meet again in April post MRI scan.  Apparently even without ovaries, the body is producing estrogen in other places so the tamoxifen continues to help.

    Once I get the BRCA results we will talk more.

  • Lisa75
    Lisa75 Member Posts: 137
    edited January 2012

    My mom had Ovarian cysts, and now I have DCIS...no breast cancer in the family...but I always wondered if those were linked.

  • Lifeafter
    Lifeafter Member Posts: 690
    edited January 2012

    I was tested for BRACA 1/2 and the results were negative.  My question is, does that automatically mean you won't get ovarian cancer?  What is my risk level with my current diagnosis and treatment, thus far.  That has never been explained to me.  I'm seeking a second opinion and will hopefully get answers.

    It was my understanding if you had the ovaries removed then you didn't need Tamoxiphen because haveing the ovaries removed served the same purpose as taking Tamo.  You would go on another drug...what I don't know, cause I stopped listening to my ass of a doctor.  Which is why I'm getting a second opinion.

    Michelle

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2012

    3monstmama-

    I gasped when you mentioned your mom's history and family history. My grandmother died at the age of 53 - in the mid 1930's from "stomach cancer". I have often wondered whether that was what it really was.....

    It is my understanding that Tamoxifen is still the only recommended hormonal for DCIS regardless of menopause status or presence of ovaries. I know I recently asked my MO whether he would want me to switch from tamoxifen to an AI some time during the 5 years as I had been reading about that change in protocol and he said NO YOU HAVE DCIS, no AI for you!  

    MROCHON- 

    Boy you have certainly been through alot of surgery this year, I hope you are healing well. Having the BRCA gene mutations puts you at increased risk of Ovarian cancer, if you are BRCA negative, then you are still at risk - but not as high as you would be if you were positive.  I would think if you had your ovaries removed, you would decrease your risk of ovarian cancer to almost zero. 

    Julie E

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited January 2012

    I do not think that would mean you will not get ovarian cancer. I think, just like women who get breast cancer and do not have the gene, it would apply to ovarian cancer. Hopefully someone with actual proof of that will come in and speak up.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    3monstamoma------you are correct---estrogen is produced in other places besides the ovaries (in the adrenal glands, skin and fat), so tamoxifen is still needed. As far as I know, the AIs are not used for DCIS. My oncologist had me continue on tamoxifen (I am high risk due to LCIS and family history of ILC) after I lost my ovaries  (not by choice; they ruptured) for another 3.5 years to finish up my full 5 years.

    Lisa----ovarian cysts are very common and generally are benign, they are not linked to DCIS.

    mrochon---you can still get ovarian cancer if you are BRCA negative, but the risk is much higher if you are positive.  Oopherectomy (removal of the ovaries) reduces risk by about 90%.

    Anne 

  • LWA
    LWA Member Posts: 39
    edited January 2012

    Does anyone know why they don't prescribe AIs for DCIS? I had not heard that before.

    I had my post-surgery appt. with my RO this week and the verdict there is that I won't have external radiation in addition to the intraoperative radiation I had at the time of lumpectomy, a decision we are both happy with.

    What remains now is to decide about the tamoxifen. I think my recurrence risk is low enough that it will be a reasonable choice not to take it, which is my strong preference. Due to estrogen being produced in body fat, I've made some dietary changes that I hope will result in losing weight, which hadn't really been on my agenda at all, but I am now extremely motivated. :-)

    I also would be more than happy to have my ovaries out, if that is an option my MO agrees with.

    I hope everyone has a lovely weekend! I really appreciate this site and you all--it's so nice to have people to discuss this with, and I learn something new on every visit.

    Linda

  • cycle-path
    cycle-path Member Posts: 1,502
    edited January 2012

    LWA, some docs do prescribe AIs for post-meno women with DCIS. I've talked about it with both my MO and my (ex) OB/GYN, but for me it's a poor choice because I have bone density issues. (AIs are very hard on bone density.) If it wasn't for bone density, I probably would have been put on an AI.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited January 2012

    3 1/2 years ago, I was perscribed femara for my DCIS, docs did not even consider Tamoxifin as I was  told the side effects were worse than on the Al.  I am 63..

    last year I was in my oncos office in tears for what at the time I thought was pain caused by the Al, it turned out to be pain from the statin I started at the same time.  They very clearly said to me that they did not want me on Tamoxifin...I changed statins and the pain disappeared

    note, I am in NJ with a ton of hospitals and think I have a really good one

  • Lifeafter
    Lifeafter Member Posts: 690
    edited January 2012

    I saw my gyno this morning.  We talked about all my options and he is scheduling me for surgery to remove my ovaries and fallopian tubes.  He will be doing it laproscopically.  I should have a surgery date in two weeks.  He said it will be outpatient, sweet!  My recovery won't be bad.  He said it should be similiar to my tubal ligation and uterine ablation which was about a week.  He is sending me to an oncologist he is very familiar with and has personally treated his family.  I should be getting a call from that doctor in the next couple of days.  My gynecologist is awesome, he is a listener and explains everything.  I feel good about my decision.  The information I gathered from you all and this board has also helped me understand and ask my gyno better questions.  Thank you!

    He also said my uterus looks really good, nice and small.  If anything develops, he'll take it out but he doesn't want to put my body through anymore additional stress.  It's been through enough!

    Michelle

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