tamoxifin and endometrial cancer

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  • perky
    perky Member Posts: 241
    edited October 2011

    They decided to do a hysterectomy on me regardless. I have cysts on both ovaries. Painful on one and suspicious on the other and fibroids and polyps in my uterus in addition to being highly estrogen and progesterone receptive.

  • memory
    memory Member Posts: 106
    edited October 2011

    Very helpful thread.

    I posted a question a few minutes ago, but these responses pretty much answer my question.

     I had two periods last year, and two this year, right about the same time. Have been on Tamox since Feb. 2010. Am scheduled for a hysteroscopy next month; doc will check lining and fibroids.

  • perky
    perky Member Posts: 241
    edited October 2011

    Still waiting...

  • perky
    perky Member Posts: 241
    edited October 2011

    B-9! Took them long enough to let me know. So the hysterectomy is still on for Tuesday but at least I don't have to worry about losing more lymph nodes.

  • lalisa
    lalisa Member Posts: 114
    edited October 2011

    Yay perky! So happy for the good path report.

  • Barbie7
    Barbie7 Member Posts: 386
    edited October 2011

    Great news Perky!  Good luck with your surgery on Tuesday.

    One interesting thing that I've noticed after my LAVH/BSO is that I haven't had an overwhelming "crash" into menopause as I had expected.  I think that is in part because I had so many SE's from the Tamoxifen that mimicked the SE's of menopause (night sweats, body aches, fatigue, sleeplessness).  I'm still on the Tamoxifen, but I haven't noticed a bump in any SE's.

    One bit of unsolicited advice... listen to your docs when they say DON"T TRY TO DO TOO MUCH TOO SOON!  They had to remind me this multiple times as I was trying to be superwoman and go off the oxy too soon, and I was doing too much too soon.  It just slowed down the overall recovery.

    My Best

  • rgiuff
    rgiuff Member Posts: 1,094
    edited October 2011

    Memory, before stopping periods for good, I went 6 months, thinking I was done, and then voila, I got 2 periods a month apart.  After that, I went 10 months without one, thinking for sure I was postmenopausal, and then again, 2 periods, exactly 28 days apart.  This time it's been 20 months, so I'm sure that I'm postmenopausal now, even though my lab values don't show postmenopausal levels of estradiol and FSH. 

    I've never had to do anything more than the 2x a year transvaginal sonogram, even when my uterine lining thickened to 10mm.  During the 1st  year on tamoxifen, I felt pelvic pressure and this was when the lining was the thickest.  Since the last period, no more pelvic pressure and lining has been more like 5 or 6mm.

  • asly
    asly Member Posts: 13
    edited October 2011

    Hi everyone!

    I'm new to the site but i have been reading this thread for the last couple of weeks.  I hope you girls can help me!  I was dx with stage 3C BC that is ER/PR+ (tumor was 9cm. x 12cm. x 6cm. and 23/23 positive lymphnodes). at 26 years old, so obviously premenopausal.  I had a bmx, ACT chemo, and 31 rounds of rads.  I just started my tamox in June.  I had a transvag us to check on a cyst on my ovary and found that not only did that one not resolve on its own as expected, it had grown and had babies living on the other ovary.  she also found that my endometrial lining is thickened (not having periods since on tamox).  Blood test showed that my tumor markers are not elevated and hormones suggest that my ovaries are still functioning (producing estrogen ie: not menopausal as we thought...) SO, i had a biopsy = inadequite results. SO, I just had a D&C yesterday.  She found that instead of being white and pretty my endo is red and angry... but no polyps that im aware of.  So now of course im positive i have endometrial cancer and im freaking out lol.

    Any advice/stories to help??!!

    amber =)

  • perky
    perky Member Posts: 241
    edited October 2011

    Miss BetsyBuzz- how are you? Anything new?

    Barbie- taking your advice and will not go back to work after a week like I was planning. How are you doing now? Glad you didn't crash, is the depression lifting?

  • Barbie7
    Barbie7 Member Posts: 386
    edited October 2011

    Perky - I'm finally beginning to see marked improvement on a daily basis.  I would never have thought that an hour on my feet, doing little more than walking around the house would drag me down for hours.  The fatigue feels like radiation fatigue. However, I AM improving.  I'm going to work three mornings next week and see how that goes.  The depression really comes and goes - kind of like a hot flash it just hits me out of the blue.  I'm not looking forward to returning to work - you know how everyone will treat me like I was out on vacation and dump a bunch of stress on me the moment I enter the place.  Ugh.

    I do think you need to plan for an extended time away from work - you can always go back earlier if you are up to it.  

  • perky
    perky Member Posts: 241
    edited October 2011

    Definately taking your advice. My job is very stressful and I don't want that to get in the way of getting better. Nice to know that the depression is more like a storm that passes through. Helps to know it will pass.

  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited October 2011

    I'm scheduled for a CT scan, chest x-ray and EKG on 10/25 in preparation for surgery. Waiting...sucks.

    I have a very high stress job, I'm not planning on going back to work for 4 wks minimum. That's my GYN Onc recommendation. It may be longer if they have to open me up. 

    Betsy 

  • sweatyspice
    sweatyspice Member Posts: 922
    edited October 2011

    Good luck to you, Perky and BetsyBuzz!

    Having not heard a peep (and it's been weeks), I broke down and called my gyn's office for follow-up sono results.  They want me to do an SIS test now.  I asked if I should just go straight to D&C at this point, she said def not & to do SIS first. 

    More nonsense / testing.  The cancer treadmill sucks.

  • lalisa
    lalisa Member Posts: 114
    edited October 2011

    Betsy, just catching up on your posts, SO sorry to hear about your dx of endometrial cancer, but it sounds to me like they caught it early, and my gyn always told me it is a slow growing kind of cancer, curable with surgery, unlikely to spread. Good luck with your hysterectomy, my experience was that the recovery is so much easier than than the mastectomies. Do take it easy after and take as much time off as you can get!

  • lalisa
    lalisa Member Posts: 114
    edited October 2011

    Sweatyspice, the cancer treadmill, yes, so exhausting. Best to you too.

  • perky
    perky Member Posts: 241
    edited October 2011

    My stuff started mid July. Found out I flunked my US early August, did more tests in September, waited a month to meet with the GYN and another 2 weeks for the biopsy. Good thing it is a slow growing cancer! Sheesh! So Betsy and I are both going to have a FABULOUS time on Tuesday. Fun. Sweaty, hope you can get your test soon and get off the treadmill. Thank you for all your your advice and wishes! I have mostly been very upset that I have to deal with yet another stupid surgery but after being freaked out for 4 months, I just want it over with so that I can get past it and get back to my life.

  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited October 2011

    Perky...I hear you! It's frustrating, I was just getting over dealing with LE (SE from Rads). My arm has given me fits over the past 1.5 years. It has just started to improve...now this. GRRRRRR......

  • CoffeePot
    CoffeePot Member Posts: 34
    edited October 2011

    I was dx in July 2005 with stage 2 estrogen/progesterone  positive cancer.  Even though I was 52, I was still not premonopausal, so I took tamoxifen for 2 years after chemo/rads.  While I never had hot flashes or weight gain, I had to stop because of bad se's, and then I was able to take evista for 2 years.  When I finished evista, my gyn discovered an ovarian cyst that was not cancerous, but my endometrial lining was a little thicker than normal (maybe around 6?).  He had me do tvg ultrasounds every 6 months until a year ago when my cyst had grown a little (perfectly normal he said even though I was 58) and my lining had shrunk back to a respectable 2 or something.  He wanted to do an edometrial biopsy because I was having a slight discharge, but because it's an in-office (no medication) procedure, I was frightened to do it, so we delayed it.

     My next app't was canceled, and I haven't seen him in a year.  I know I should go back just to check, but I haven't been worried.  He also prescribed estrogen/testosterone for me, but not progesterone, and I was worried that could have been causing problems.  My grandmother died of vaginal cancer many years ago.

     Recently I've been having much more of a discharge--it's sort of brown streaked with bits of red, but still very thin.  Finances are very difficult right now, and every office visits costs 30 which I honestly won't have for a month.  And then, I'll have to come back for another to do biop, then more money for blood work.  So I'm wondering, for those of you dx with a vaginal cancer, what were the symptoms?  Both my gyn and onc felt the bleeding was most likely due to post menopausal thinning.  My onc felt the thickened lining was normal as a result of evista and nothing to worry about.   

    So while I don't want to go unless it's absolutely necessary (and it will still have to be a month from now), I am beginning to be worried with the change of discharge.  Also, I've had incredibly bad sciatica down my legs--but that's gone, too.  I keep thinking/wishing so much is just because of my age--59.  This is so disjointed, but I guess I'm asking about symptoms of vag. cancer.  Thanks.

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

    CoffeePot, I don't know the symptoms but my MO said that while we're on these meds, she lowers the threshold for when to see the gyn.  i.e. check things early; better safe than sorry. I'm on tamoxifen and I know that any unsual blood is something they'd' want to check out. I don't know that they'd automatically need to do a biopsy and bloodwork, so maybe you can cross that bridge when you come to it? Do you have any other way to get educated medical advice? Can you call and speak to the doctor's nurse? Does your doc respond to email? (mine does, so I can shoot her quick questions) or ?? 

  • CoffeePot
    CoffeePot Member Posts: 34
    edited October 2011

    Thanks, Peggy, for your reply. While I was on tamox, my onc did request a vag. ul, and it was fine for a premenopausal woman.  It has been 2 years since I took either tamoxifen or evista. I believe a lot of times tests are recommended just to cover bases especially to prevent malpractice.  Calling either doc would just necessitate office visits (one for initial consultation and one for test) then tests then bills.  If it is something, then I would try to do something, but I am 6 years out, and I'm weary of all the scans, x-rays, and blood work that are recommended.  I used to push for them, but not now. I wish my onc or gyn did respond to email--that's wonderful!

    When I first reported the bleeding, neither doc thought it was unusual for a menopausal woman (most likely shedding of uterine lining), but this is more intense.  I know if I call, they'll want to see me or at least the gyn will.  But, I just want to know if any others here had similar symptoms. Thanks again for your reply. 

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

    I believe a lot of times tests are recommended just to cover bases especially to prevent malpractice.

    Yeah, I agree. FWIW, since I'm less than 9 months out from Dx, I'm still in the better-safe-than-sorry camp, but I can see how someone could get sick of all these tests/exams/etc. Good luck. 

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

    On tamoxifen and Lupron. My gyno said anyone who is post menopausal and has staining or even a clear discharge needs examing. Didn't realize I needed to contact the doctor about the clear discharge... But I called anyway for an appointment because I hated walking around with the discharge. Turns out, it was time to yank out another polyp, that was causing the problem. I knew I had the polyp...but the doctor only told me to call if I was "symptomatic.". I assumed that meant "staining.". Now I know it refers to ANYTHING. Go figure...



    Good luck!

  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited October 2011

    CoffeePot...Definitely have it checked out. I am 55, had slight discharge (spotting-dark brownish color) and very little of it. I called my onc right away, they suggested I go to a GYN. Chemo put me in menopause and I had just decided to stay on tamox for one more year.  My GYN said no problem, most likely the discharge was caused from the tamox (which I was currently on) or from a polyp. In my case, the TV showed thickening (9) and therefore a biopsy was in ordered. The GYN was shocked as the results from my biopsy indicated endometrial cancer. I'm scheduled for surgery in November, they are taking everything out, ovaries, tubes, uterus, cervix. I urge you, go to the doctor! 

  • Barbie7
    Barbie7 Member Posts: 386
    edited October 2011

    (((Perky))) Good luck with your surgery today.  Let us know how you are faring.

    Coffee - I understand your financial concerns, but I would urge you to consult with a Doctor.  You may want to check with the social worker at the hospital where you were treated for breast cancer to find out if there are some financial options for you.  I wish you the best.

  • perky
    perky Member Posts: 241
    edited October 2011

    Thanks Barbie! Checked in and waiting to go back.

    BetsyBuzz, hope your tests go well today!

    Coffee, hope you get some answers quick.

  • perky
    perky Member Posts: 241
    edited October 2011

    All done. Some cramping and thats it for pain. I even expect to go home tomorrow. So far, all the drama leading up to it is far worse than the surgery itself.

  • lalisa
    lalisa Member Posts: 114
    edited October 2011

    Perky, so glad you are doing well. For me the hardest part was the bloating from the gas used for the laproscopy that peaked on the 2nd and 3rd day. I wasn't expecting it. It was not painful, but just very uncomfortable. It helped after the Dr explained to me what was going on. And take your pain meds, they help a lot!

  • stephN
    stephN Member Posts: 284
    edited October 2011

    Not sure if this is where to post this question or not, but I have pre-existing thickening, polyps, and ovarian cyts.  I'm set to start tamoxifen in Dec.  My gynecologist says the pre-existing stuff can be managed with d&c or she would be willing to do the total hysterectomy, take worry out of the picture.  My oncologist says zoladex will have the same effect as the hysterectomy and I can take the tamoxifen without the increased risk.  

    I'm so confused...I'm 43, so I know there is a downside to going into premature menopause, but I'd be doing that anyway with the zoladex.  And aren't there side effects to that too?   VoraciousReader, you mentioned you are on tamox and lupron.  Do you mind sharing your experience?

    Thanks for any advice you can give me.  I don't want another surgery, but after being shocked with one cancer diagnosis, I certainly don't want another shocker a few years down the road. 

  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited October 2011

    Perky...glad to hear you are doing well. I agree with lalisa...recalling my gallbladder surgery the shoulder pain from the gas was far worst than anything else. Good luck in managing the pain and healing.

    My CT scan went ok, I have very small deep veins. So accessing them is always very stressful.  It was a long day. While waiting for the machine to be available a lady came in to the lab where they access your veins with the contrast. Anyway she started screaming, I mean loud!!! The poor phlebotomist said I'm SO SORRY...I didn't realize it hurt so much. She said in a deep breath...oh it really doesn't hurt, it's just how I cope. I'm sure the guy wanted to deck her. If he didn't, I did! LOL. It took my mind off of everything.

  • perky
    perky Member Posts: 241
    edited October 2011

    LOL! Wouldn't you love to scream for the heck of it? The gas is definitely there. I feel very full but it isn't painful, just glad I am not trying to put on jeans anytime soon. The pre-surgery stuff was so much worse than the surgery. Now that I am recovering, I get that I was in pain from my overies all the time. I am in less pain now. Hope the terror part of your ride is over soon. The surgery is nothing compared what you are worried about now. I had a meltdown over this, it was just too much to deal with. But the worry was the worst part.

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