Tamoxifen, PCOS, Infertility, Overweight, Endometrial Cancer

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coralrose413
coralrose413 Member Posts: 15

I feel like the poster child for endometrial cancer and I'm so afraid to start Tamoxifen.  High risks for endometrial cancer are patients that are: overweight (check), PCOS (check), never had any pregnancies (check), infertile (check), and patients taking Tamoxifen.  I'm 90% estrogen receptor positive, and 60% progesterone receptor positive.   Is anyone else out there in this same predicament?  If so, what did you do, or can you recommend?  Many thanks in advance.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2014

    That's a high level of concern! I'm not personally in your exact position but had a couple thoughts. You probably won't try to get pregnant anytime soon (even if you could, due to infertility - I have experienced that) and losing weight is perhaps a longer term project which I can also relate to so that leaves the polycystic ovary syndrome, in case someone doesn't recognize the abbreviation. 

    Assuming you have a gynecologist following you for that, has treatment like metformin been contemplated? That doctor could also reassure you that uterine cancer is usually detected quite early with signs like abnormal bleeding, etc. and is very "curable" with surgery. 

    Given the high estrogen receptor involvement in your tumor, tamoxifen's unique blockade ability is a definite advantage while the risks of side effects are only theoretical until they actually happen. If you need information from the specialists on your team, do call next week and get answers to your questions. I think you should be comfortable with whatever therapy is prescribed and it's their job to help you.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited August 2014

    Seems to me you would be an ideal candidate for getting shots to shut down the ovaries, then taking an AI instead of tamoxifen.  

  • coraleliz
    coraleliz Member Posts: 1,523
    edited August 2014

    coralrose-I'm also a gynecological nightmare. PCOS, infertility(but with MUCH treatment I did succeed). I'm not overweight. As mentioned above, the drug Metformin can be used to treat PCOS & is being studied in breast cancer patients. I'm on tamoxifen. I've develpoed cysts(did this prior to tamoxifen also), polyps, thickened lining & lots of funky bleeding. I get ultrasounds about every 6months, uterine biopsy every year, hydrosonogram every time I complain about bleeding & I've had 2 polypectomies/hysteroscopies/D&Cs. 

    I've been on Tamoxofin for close to 3 years. Sometimes I wonder if I should get everything taken out(hysterectomy/ooph). The polypectomy/hysteroscopy/D&C surgeries were easy surgeries for me. I had them under general anesthesia, required no pain medication & went to work & worked out the next day. The hysterectomy has a much longer recovery period. 

    I haven't found a doctor willing to shut down my perimenopausal ovaries.

    A hysterectomy would mean I could switch to an AI. AIs have their own side effects. My fear is that I would just be switching side effects.[Could be worse?] So, I stay with the devil I know.............

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2014

    Two of you with "Coral..." screen names! Maybe you're long lost twin sisters...

    I thought about ovarian suppression/removal for OP also but figured that was an option her gynecologist would consider for discussion. As a pharmacist, I usually think oral medication is less invasive and easier to quit or reverse than surgery or injectable therapies.

  • coralrose413
    coralrose413 Member Posts: 15
    edited September 2014

    Hi Ladies, thank you so much for your input.  I did ask about the surgical procedure when Tamoxifen was suggested, but was told (by the medical oncologist) because I'm perimenopausal that could cause more serious problems for me.  Ironically, my mother, grandmother, and aunt all had total hysterectomies (in their 30s, 40s, and 50s) due to uterine fibroid issues (and they were fine)...so I figure I'd rather go the surgical route than 5 years of possible side effects.   Now that I have BC I wonder if they all dodged a bullet for having their ovaries removed early....I'm scheduled to see my gyno in November and will ask for her input.  Will keep you all posted.  Hope you're enjoying your holiday! :0)

  • coraleliz
    coraleliz Member Posts: 1,523
    edited September 2014

    coral-My stats are less favorable than yours. IDC with 2 involve nodes, etc. What Tamoxifen is giving me is a 10% increase in disease free survival 10 years out. Your cancer is less likely to reoccur. What statistics were you given by the MO. It should be in the single digits. There is an oncotype test for DCIS.

    http://breast-cancer.oncotypedx.com/en-US/Professi...

    I haven't researched it much. Maybe something to ask about.

    There are young ladies on these boards who go off Tamoxifen early for one reason or another. Sometimes it's because they want to become pregnant. They don't complete 5years.

    You'll have to weigh the benefit vs risks piece of the puzzle. For my 10% reduction, I thought Tamoxifen was worth a try. I don't know if I'd try to slug it out for less. That's just me.

    What I never understood was that I was given statistics on chemo, RADs & Tamoxifen. The decision was left up to me. I had a hard time getting anyone to discuss ovarian suppression with me & no one who would offer it to me. So that decision wasn't mine?

  • coralrose413
    coralrose413 Member Posts: 15
    edited September 2014


    Hi Coraleliz (sister Coral :) I was all set to do 7 weeks of radiation, but had a mammo last week that showed (3) new microcals near my chest wall.  BS is doing a core biopsy this Thursday if all goes well I'll go onto radiation, but if not I'm scheduled for a mastectomy on left breast with SNB on 9/19/14 (BS informed me lumpectomies will no longer be an option for me, had too many).  I am definitely asking what my oncotype is (thank you).  I'll go on Tamoxifen if I end up having the latter above.  I will keep you posted.  Thanks again!

  • coraleliz
    coraleliz Member Posts: 1,523
    edited September 2014

    Coral-the DCIS oncotype is newer than the IDC version. It may not have been run on your tumor. You will probably have to ask for it.

  • coralrose413
    coralrose413 Member Posts: 15
    edited September 2014


    Thanks Coral, I'll ask. Smile

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