Tamoxifen & thickening of uterus lining

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  • KEW
    KEW Member Posts: 745
    edited May 2009

    Dips, only anecdotal information.  I luckily never had to make the choice to have an abortion, and I had cancer.  All of my friends who've had abortions are bc free.

    Karen

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    Maeve--I developed large ovarian cysts while on tamox--gyn said tamox didn't cause it, but I guess we'll never know for sure. Mine ruptured--I had to have a total hysterectomy. It's good to have a yearly transvaginal ultrasound  while on tamox to monitor both the uterine lining and the ovaries.

    Anne

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  • Maeve
    Maeve Member Posts: 82
    edited May 2009

    Thanks Anne, at the moment it seems to be only a small cyst on my left ovary, hopefully they will keep an eye on it, I'm sorry that you had to have a hysterectomy due to the rupture.  I guess since dx all lumps and bumps are horrible things.  I've only another 3.5 years on tamoxifen, just hoping the SEs remain minimal.

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  • Renata
    Renata Member Posts: 172
    edited May 2009

    Hi Maeve,

    I had a pelvic ultrasound early this month and I was told I have a big ovarian cyst, GYN ordered a pelvic MRI and bloodwork for CA 125 marker which came back normal. The MRI shows two big ovarian cysts (6 and 7.5 cm). The GYN wants to remove them surgically as soon as possible. I'm sure they have been caused by the Tamoxifen which I began taking in August last year (although Onc says no that they are probably a result of the chemo) , so I have decided to stop taking Tamoxifen for one month and have the ultrasound redone to see if they resolve themselves or at least decrease in size. I also have decided to seek another GYN.

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  • Maeve
    Maeve Member Posts: 82
    edited June 2009

    Thanks for that Kryptonite, at the minute the cysts are only 3cm and the gyn felt it was quite 'normal' for someone my age (31) although I'm going to speak to the oncologist about this as I personally wouldn't call having a cyst 'normal',  normal is having healthy cyst free ovary.   Did you have any pain with your cysts?  Glad that all was fine with the bloodwork, Would love to know how you get on with coming off the tamoxifen for a month, that would be an interesting result if you find they decrease in size!    Keep me posted, and really hope they disappear on their own. 

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  • lktracey
    lktracey Member Posts: 110
    edited June 2009

    Well, let me add my story and see what ya'll think....

    Finished chemo in February, started Tamoxifen in March.  Had regular periods thru chemo (4 rounds), then stopped after Feb.  None March, April.  May comes and Mother's Day I start with heavy, painful bleeding for 5 days, then it just kind of stops.  Last Saturday, woke up with bleeding, changing pad every hour and a half to 2 hours.  Woke up Sunday to (excuse the graphics) bloodbath - all in my clothes, sheets, bed/mattress cover.  I have never in all my years bled like this - even after my D&C or birth of my child.  Called oncologist and he ordered pelvic US, which I had today.  Interestingly enough, down now to dark spotting only.  Doctor stopped Tamoxifen for now. 

    Any thoughts??

    Lauren

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  • Maeve
    Maeve Member Posts: 82
    edited June 2009

    Lauren, I'm sure you're body must be shattered after such a blood loss, I'd love to know how much research has been completed on pre-meno women taking tamoxifen, I always got the impression that the SE's for tamox were mainly hot flushes, mood swings etc, I never imagined that there would be so much stuff surrounding the uterus area.   Hope all is fine with the US.

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  • Renata
    Renata Member Posts: 172
    edited June 2009

    Lauren, I also had my periods during the 4 A/C chemo treatments, but they were light and short just as they were before cancer. They stopped altogether when I began the Tamoxifen in August last year and I had a normal period this April but just very light spotting in May... supposedly the fact that my ovaries are still functioning (I'm 39 now) but hadn't had a period during these months is what caused the cysts to grow; fortunately Maeve they don't hurt at all which seemed to surprise both the Gyn and the Onc. I have read several posts of women complaining of very heavy bleeding while on Tamoxifen...I'm also having sight issues since I'm taking it. I think there are a lot of things about Tamoxifen we are not told about...Good luck everybody.

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  • kjd
    kjd Member Posts: 6
    edited June 2009

    I was on Tamoxifen for about 12 months.  I started spotting.  A biopsy during a D&C found very early stage Endrometrial Cancer.  Had a complete hysterectomy 4 years ago, and no complications since.    Bottom line, I suggest to anyone on Tamoxifen to pay close attention to any side effects with your periods and get them checked out.

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  • Dips
    Dips Member Posts: 8
    edited June 2009

    Hi Kjd, if you don't mind me asking how old were you when u started Tamoxifen?

    I'm 32 and worried that I may have it, I had biopsy done, which came back incolcusive. Not sure what that means. but if you have any insight on this I would appreciate

    Thanks

    Vina ( DIPS)

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  • sfold2002
    sfold2002 Member Posts: 1
    edited August 2009

    I just found out i have thickening of the uterus wall from taking Tamoxifen and i just had a biopsy done im waited for results im very scared Does anybody else have the same issue?

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  • Bono
    Bono Member Posts: 40
    edited August 2009

    Just was wondering after reading these post regarding problems w/uterine thickening. Has anyone had cramping before, after or during any of these issues? Just starting to notice some changes for myself and was wondering if there was any SE's for anyone looking back over the last 6-12 months that you would say now may have had a connection.  Any comments are appreciated. Thanks.

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  • vacationbound
    vacationbound Member Posts: 171
    edited July 2012

    Where are all you women now and how did you deal with your Tamoxifen SE's, I ended up bleeding daily for 3 1/2 months straight, caused my lining to get over 10MM (anything over 5 is abnormal) I developed an cervical polyp and an ovarian cyst; My pap smear and pelvic exam were normal just before starting the Tamoxifen. END RESULT: Total Hysterectomy! Pathology tissue showed signs of metaplasia and dysplasia forming, all within 5 months of being on Tamoxifen.

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  • ShelMel
    ShelMel Member Posts: 207
    edited July 2012

    vacaybound -

    That's not good! Only 5 months!!?  That's scary!

    I'm here researching my options, too. I'm having bad bone/joint pain on the Tamoxifen and my onc and I are discussing Lupron or Zoladex or a hysterectomy/ovary removal. I also am having some serious chemo brain issues that aren't going away. I've had 2 transvaginal sonos already and my GYN basically told me that my uterus is mush and she's seeing some cysts. She recommended a biopsy when I come back (6 months) if the cysts have grown.

     Also, I have an incredible amount of discharge which is causing yeast infections. I'm at a loss of what to do. I'm to the point now of thinking that maybe I just need to get it all take out and have a bilateral mastectomy, too.

    All those stupid "pink" ads that show survivors moving on piss me off. Just because treatment is done, doesn't mean your cancer life is. 

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  • vacationbound
    vacationbound Member Posts: 171
    edited July 2012

    Hello-You are young-are you done having children? If so, then you might consider a Hyster but if not then Lupron or Zoladex shots OR monitoring the uterus and doing frequent D&C's when needed BUT if you are having bone pain now, you will def have bone loss when you go post-menstrual, then add to the mix the AI's aka Aromatase Inhibitors as you are ER+ but the easy fix here is making sure you take your Power 4 supplements daily! Pot, Mag, Cal, and Vit D3. I have also added Strontium, a mineral that helps build bone density as I am avoiding Bisphosphonates entirely. I'm concerned that your GYN wants to wait 6 months to see something develop-to me that's crazy! I drive my bus, not anyone else-if you see any abnormal bleeding then do not wait, barge into your GYN's office and insist on more tests as the Tamoxifen can turn on your womb quickly. In fact, seek out a Gyn/Onc, they are better to deal with Breast cancer patients than a regular GYN. Also note that Ovary suppression drugs (shots) are very expensive, my portion of the bill was $400 a month, that's a car note for me! Then if you ever lose your insurance for any reason, then what??? The problem with being pre-menstrual is these are your choices, going to the other side has been very comforting for me; at some point we all go thru the change of life-I traded periods for hot flashes which for me was a great trade off!!!! No more mood swings either-I had severe painful periods and mood swings galore and now I feel like a very calm and rational person. Good luck with your decision.

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  • Suegardens
    Suegardens Member Posts: 3
    edited December 2016

    Diagnosed with (LCIS, DCIS, Ductal Carcinoma and Lobular Carcinoma) at 47(four years ago). Had a bilateral Mast. Started Tamoxifen. Hx of polyps, fibroids, PCOS. I take Metformin for (borderline A1C, PCOS and strong family hx of diabetes). I also have Graves Disease. I am peri-menopausal with an estrogen level at 280. In 2016, I had spotting in March and in November I bled much more for several days. I had a transvaginal ultrasound and biopsy. US showed a lining that was 9x thicker than normal measuring at 36 according to my ob. I also have a cyst that wants to take over the world (its grown since last year's ultrasound). Something in my body changed in October 2016. I began having bone pain in my legs at night (lots of tossing and turning). I also started having chronic period cramps. Vaginal discharge increased.  I contacted my ob asking for an ultrasound but his staff called back and said that he may not do it even though my symptoms had changed. So, I let him go. After cancer, I have become a strong advocate for myself. I have had lots of different obgyns for various reasons. The first ob I let go got very frustrated doing a biopsy because it was taking too long he threatened to put me in the hospital to do it. I switched practices. The next ob retired. I went to another in the same practice and he scoffed at the annual biopsy and ultrasounds.These days, the ob's do not want to monitor me with ultrasound and biopsy. So, now I go in for a D &C on Monday. My question is what has been your experience after having a thickened lining? I understand if they find cancer I am headed for a hysterectomy but if the pathology comes back normal my doc said she wasn't going to get to excited if the lining grows back thick again. As I understand it, risk of uterine cancer increases with age. So, how can I protect my body? Has anyone else gone through this much grief with some doctors or am I just lucky?

    No chemo, no rads,

    started my period at age 9

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  • cl00
    cl00 Member Posts: 39
    edited January 2017

    hi I was diagnosed back in 2009 w DCIS and one positive lymphnode. I had chemo and mastectomy in 2010. Have been on tamoxifen since July 2010. My oncologist said the new results showed that 10 years tamoxifen is better 5 years. Plus I have bone density issue so I decided to stay on. I started to have spotting later half of last year. Then Ihad bleeding for a few days after sex. So I went to see doc and had ultrasound. The gynecologist just called and there is thickened uterus lininng. She just said not sure whether it is cancer. I am freaking out now. I am going to see her today but so scared. I finally feel life is normal now. But there is a chance i have another cancer due to medication. Anyone had similar experience?

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2017

    I had a biopsy last week and am awaiting the results. My lining was 2.8cm. My gyn considers normal around .5 cm. Remember that uterine cancer is quite rare. I'm going to assume mine is benign until I hear otherwise. I have stopped Tamoxifen and will switch back to Femara soon.

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  • cl00
    cl00 Member Posts: 39
    edited January 2017

    thanks for letting me know. I talked to a couple of friends and feel better. I am really hoping it is benign and just need to switch to different medication.

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  • annoyingboob
    annoyingboob Member Posts: 558
    edited January 2017

    kid - may ask how old you were? my mo says premenopausal women don't get endometrial ca associated with tamoxifen bc they shed their uterine lining each month. he doesn't even advocate serial ultrasounds. im worried bc I have small firbroids, and want them to stay small - currently debating whether or not to take tamoxifen. very risky for me bc lg fam hx of strokes too. scared!


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  • Variable
    Variable Member Posts: 77
    edited January 2017

    I asked for a baseline ultrasound before starting tomoxifen. I also have fibroids which cause me a great deal of monthly trouble as it is. Lining is abnormally thick already. Getting a surgical consult in two weeks to talk hysterectomy. Wondering if I should do the total with oorph as I am ER +. Just settling down from the BC diagnosis, and resolving to start tamoxifen only to have to wait again and begin worrying about something else. UGH!

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  • cl00
    cl00 Member Posts: 39
    edited January 2017

    42. I did talk to another doc today and he said the thickness could vary quite a lot through the cycle. Of course he still says I need to wait till test result. Typical stuff: don't lose sleep over it till I get the result.


    Sorry to hear about your situation too. When will you get the result?

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  • cl00
    cl00 Member Posts: 39
    edited January 2017

    hi variable sorry to hear about your situation too. I am also ER positive. I feel the same way: life finally seems to be normal... now this.

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  • Smithie1963
    Smithie1963 Member Posts: 1
    edited June 2017

    hi dips,

    Just wanted to know what happened with your lining?

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