tamoxifin and endometrial cancer

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  • perky
    perky Member Posts: 241
    edited September 2011

    Did another ultrasound and MRI this morning. This time it was focused more on my kidneys. The US tech said he didn't see anything and sounded bored to death looking at my kidneys. I am taking that as a very good sign! So now I wait, and wait. I can't get in to even see the gyno until late Oct. I hate that.

  • perky
    perky Member Posts: 241
    edited September 2011

    Got a call from my PCP... The MRI and Ultrasound only showed a complex cyst on my right ovary and a polyp. Nothing on my kidneys! What a relief! She also said that my uterus was a 7mm just before my period so that is normal!  So for now, I am staying off Tamoxifen until I see the gyno and figure out what to do but it is feeling so much less scary than it did a week ago.

  • lalisa
    lalisa Member Posts: 114
    edited September 2011

    yay perky, glad for your good news :)

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2011

    Perky...  I guess this is our new normal....we're happy when there's something OTHER than cancer going on in our bodies...  Glad you are doing well despite the cyst and polyp.  I've had ovarian cysts too.  Still waiting on my pathology report for my polyp and uterine thickening... 

  • perky
    perky Member Posts: 241
    edited September 2011

    I hope you get good news. I don't know how people do this...

  • lalisa
    lalisa Member Posts: 114
    edited September 2011

    Well I got bad news(simple hyperplasia), and had a hysterectomy, and I would say I am fine. I guess it is all relative. Seriously, it's the waiting and the not knowing that is so hard, that's what I would like to get really good at.

  • perky
    perky Member Posts: 241
    edited September 2011

    Sorry you had a hysterectomy but glad you are doing well. You are so right, the waiting is the worst!  Does anyone know what our options are? Lupron shots or hysterectomy or take a big risk? Is that it?

  • Juli50
    Juli50 Member Posts: 859
    edited September 2011

    LaLisa - Were you on Tamoxifen for 4 years before you had the hysterectomy?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2011

    Perky...I also had fibroids diagnosed along with a recurrent polyp when I began my journey.  With my baseline transvaginal sonogram they were found.  I had polyps several years before I was diagnosed.  I began taking the Tamoxifen AND lupron injections and the fibroids disappeared, leaving the lonely polyp.  The doctors were in a "watchful waiting" period since I had NO symptoms.  I started getting a clear discharge after 16 months on the Tamoxifen and my endometrium grew to 9mm thickeness.  They told me had I not been symptomatic, they would have waited even longer...but they would NOT wait had the endometrium grown to 11 mm. 

    I spoke to my physician assistant at the MO on Wednesday.  She said if the biopsy is negative (I'm still waiting), she still thinks I'll be able to continue taking the tamoxifen.  She said they expect with some women for the endometrium to get thicker, but as long as they watch carefully, she didn't think it was a problem for me to continue.  I'll be taking lupron injections for another 6 months, until my 55 birthday, and then stop for three months and check my menopausal status before deciding whether or not I still need the lupron.  If I have a positive biopsy...all bets are off.  Might just get rid of everything...I hope it doesn't come to that, because my plan was to take Tamoxifen for 5 years and then switch to an AI for 5 years pending whatever research is out there....

    BTW...waiting doesn't bother me at all.  I was already diagnosed with cancer.  Like you, I have survived several life threatening illnesses in the past, they really can't scare me anymore.  As long as my family is healthy and happy, I don't worry about my own health.  I know. I'm pretty stoic.

  • perky
    perky Member Posts: 241
    edited September 2011

    Voraicousre - I woudn't say I was stoic. Wish I was. I have been feeling like I dodged some big bullets and they keep coming! Yikes!

    Thank you for letting me know that you can do the shots and Tamox. It's nice to know there are other options.

  • lalisa
    lalisa Member Posts: 114
    edited September 2011

    Juli50, yes, it was after 4 years that I developed simple hyperplasia of the endometrium. My gyn monitered the thickness of the lining, and even after 6 months, it was thicker than it should have been. So she would do a D and C, and send the contents for patholology. 3 times it was normal (although I did have many polyps once). Then the 4th D and C showed some simple hyperplasia. I decided on a partial hysterectomy to keep the hyperplasia from progressing even though a gyn/onc advised that I had a few other options. (I kept my ovaries and cervix after much consultation w/ docs).

    I am one of the women for whom tamoxifen causes too much stimulation of the endometrium. It probably has to do with my "natural" hormone levels even without tamox, and my age and progress toward menopause.

    I have thought for a long time that my body seemed estrogen dominant. When I breastfed my first child, my period came back in just 2 or 3 months, and the same thing happened after my second child when I was breastfeeding both of them! I suspect I made a lot of estogen and also was "supplemented" by all the estrogen mimicking chemicals all around us. I think both these things were factors in my developing breast cancer, and probably in my reaction to tamoxifen. Besides that, I have had few to no side effects from the tamox.

  • lalisa
    lalisa Member Posts: 114
    edited September 2011

    Voraciousreader, I admire your stoicism!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2011

    B9!





    Another thing about my stoic nature is I don't spend time wondering how I got here. My 86 year old mother recently got a cancer diagnosis as well. She is pretty stoic too. She said, with all the people she has lost in her life, she knew eventually something would catch up to her. Her attitude is remarkable. The only drawback is that she now behaves hedonistic!

  • perky
    perky Member Posts: 241
    edited September 2011

    LOL! Your mom sounds like a hoot!

  • Juli50
    Juli50 Member Posts: 859
    edited September 2011

    LaLisa - Thanks for sharing. I haven't had any SE's from Tamox except uterine lining thickening too. I hope I can stay on it for 3 more years. I can't take AI's because I got osteoporosis from chemo.

  • mrsbeasley38
    mrsbeasley38 Member Posts: 62
    edited September 2011

    anybody ever thought that once you have BC it just proves we are all at higher risk for other cancers as well?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2011

    Nah! I grow stuff all the time and with the exception of BC, all my other growths( and there have been many) were, thankfully benign.

  • nmi
    nmi Member Posts: 180
    edited September 2011

    What do you all think? The yesterday I started spotting (very, very lightly). I do have mild cramps too. Before this all stared I noticed my breasts seems fuller and tender, which is unusual. I have not had any period or spotting for 10 hrs and have been on tamoxifen for 1 yr. Are these typical symtoms to be concerned about, who am I kidding, I know the answer to that......

  • lalisa
    lalisa Member Posts: 114
    edited September 2011

    At just 1 year on tamoxifen, it is REALLY not likely to anything serious (that's what my gyn told me) but most gyns would probably want to check you out for the spotting without regular bleeding. It is not an emergency though, is my understanding, just something your gyn would want to be aware of. Or, maybe your period will actually start soon, that would be great!

  • perky
    perky Member Posts: 241
    edited September 2011

    So excited! My appt with the GYN has been moved up to tomorrow! Good or bad, the waiting is almost over! Of course bumping the appt up has nothing to do with me, the doctor is on vacation next month when they originally scheduled the appt. Whatever the reason, so happy to get it over with. I will let you know how it goes.

  • perky
    perky Member Posts: 241
    edited September 2011

    Saw the GYN who already spoke to my PCP and ONC. I will be having a total hysterectomy Oct 25. Sigh. I'm at peace with it though.

  • LivingLifeNow
    LivingLifeNow Member Posts: 68
    edited September 2011

    Perky,

     Sorry to hear about your upcoming hysterectomy. Hope all goes well. Keep us posted.

  • TAPPY
    TAPPY Member Posts: 283
    edited September 2011

    Concerned about this.

    I already have hyperplasia (sp) and had a Uterine biop and PAP  in Aug (came back good) - and Ultrasound (was on progesterone for one month but I hated it so I refused to take it again)

    I am 51 - in "menopase" but still have regular periods. OBGYN was going to do a "scope" or look see....... but then  Sept - I get hit with the BC !  I am just wondering if this is all inter related some how - and if I should even be concerned with what is happening down below.

  • lalisa
    lalisa Member Posts: 114
    edited September 2011

    Tappy, from what I understand, the hormone imbalances of menopause and perimenopause can cause hyperplasia in any woman (not just women w bc), and gyns usually treat it with progesterone which reverses the hyperplasia.

    Is your BC er+ and/or pr+ ? Your onc should be able to help you navigate all this, especially if your bc is hormone responsive.

  • lalisa
    lalisa Member Posts: 114
    edited September 2011

    Perky, I just had a hysterectomy in July, laproscopic, kept ovaries and cervix. It was all pretty smooth, easy recovery. PM me if you want.

  • perky
    perky Member Posts: 241
    edited September 2011

    Thanks lalisa! Very nice of you to offer. So far my only concern is managing the surgical menopause symptoms. It's laproscopic so I expect the surgery to be not the worst.

  • TAPPY
    TAPPY Member Posts: 283
    edited September 2011

    thanks for the info - on this - it is all so confusing and scary.

    I dont know all of the specifics yet, but I will certainly ask about it

  • Barbie7
    Barbie7 Member Posts: 386
    edited September 2011

    Perky, I just had a laproscopic assisted vag histerectomy and bilateral salpingo oopherectomy (they took it all - ovaries, tubes, uterus and cervix) last Monday.  I spent two nights in hospital and I'm off work for 4 weeks.  I too was afraid (am afraid?) of surgical menopause symptoms, but so far, they haven't been any different than the SE's I've had from Tamoxifen.  Some women say they kick in at week two, so I guess it is still wait and see. PM me if you would like. 

  • peggy_j
    peggy_j Member Posts: 1,700
    edited September 2011

    lalisa, thanks for posting this. 

    from what I understand, the hormone imbalances of menopause and perimenopause can cause hyperplasia in any woman (not just women w bc), and gyns usually treat it with progesterone which reverses the hyperplasia.

    I didn't have a clear understanding of hyperplasia, so your comment caused me to google and get better educated. (and good to know it's reversible.)

  • soulswithin
    soulswithin Member Posts: 154
    edited September 2011

    I was wondering why we can be treated for hyperplasia with progesterone also to reverse the uterine/ovary pain and swelling. I havn't felt this bad in that area of the body in over 10 years. I just don't like the idea of whats going on.

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