Tamoxifen and enlarged uterus

Options
slate5
slate5 Member Posts: 15


I am 43 and have been on Tamoxifen for a year. I have had mild pelvic pain and regular periods. The last few months, I have had extra periods (short cycles). I finally went to the doctor and was sent for a pelvic and TV ultrasound. My family doctor just called and said I have a slightly enlarged uterus and is sending me to a gynecologist. I know the Tamoxifen may not be the cause, but I have definitely felt "different" since taking it. Does anyone know what other tests the doctor will recommend?

Comments

  • Jelson
    Jelson Member Posts: 1,535
    edited November 2013


    If the tv ultrasound shows that the lining of your uterus is much thicker than it should be, the doctor might recommend an endometrial biopsy - which is an office procedure or a d&c which requires anesthesia and is usually done outpatient/hospital. I am having a tv ultrasound tomorrow due to spotting - but I am 63!!! Tamoxifen can cause the endometrial lining to thicken - WITHOUT it being cancer and I assume the uterus can swell for other reasons - fibroids? Because I assume you are premenopause - your doctor might recommend no additional or different tests than I had. Hope whatever is found is nothing to worry about.


    Julie E

  • LoriBach
    LoriBach Member Posts: 130
    edited November 2013


    I just went to the gyn and had a tv ultrasound which showed my uterine lining to be 13mm (should be 5mm). Had the biopsy done, came back fine. He also found a 5cm fibroid. Since I am having my ovaries removed, we are going to take the uterus as well.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    Fibroids (benign) can definitely enlarge the uterus. Long before I had breast cancer, I had fibroids, and a uterus enlarged to about the size of a 4-months pregnancy. I also had significant ovarian cysts, and was very scared of ovarian cancer, but all checked out OK. Had lots of IV ultrasounds to keep track of everything.Totally benign.


    Eventually, due to spotting that almost became a constant period, I had a hysterectomy. Since I was 50 at the time, my GYN said I could leave the ovaries or have them removed -- I decided upon removal (my Mom had a scare in her 70's and had to have ovary removal then due to suspicion of cancer). So, when the BC came along, I was glad I had total hysterectomy & ovary removal. Less estrogen to feed the cancer!

  • Jelson
    Jelson Member Posts: 1,535
    edited November 2013


    ok, reporting back = had tv ultrasound - first time with physician as well as technician - also, before the tv, an abdominal ultrasound. the doctor was very informative - pointing out stuff on the screen to me-They found my uterine lining was 15mm thick and that I have a polyp! either of which could be causing the spotting. I will have a hysteroscope! and d&c - but apparently no urgency since I couldn't get scheduled before Dec 18th.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited November 2013


    I had the hysteroscopic procedure to remove a polyp almost a year ago. I also had a D&C at that time. It stopped all my funky bleeding. Actually have only had 1 period since. Hoping your surgery goes well. (I had to wait over a month also, they weren't to worried about me either)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013

    I have been on tamoxifen 4years now. I went in for vaginal ultrasound, which led to mri because of thickening of uterus and polyps/fibroids. Had d&c(easy outpatient) and waiting for tissue results. I am hormone positive and my onc wants me on for 10 years. He just told me after 5 years of him treating me that first 5 years success rate is very good but 10-15 years is when recurrence can happen. I thought this was all over,but I guess it's our new normal!

  • Jelson
    Jelson Member Posts: 1,535
    edited December 2013

    had my hysteroscopy and d&c today. went very well. I love it when suddenly you are back in your cubby, what, all done??? Only problem was had show I could pee before I would be allowed to go home.  I couldn't pee! chugged three water bottles and two cups of tea and finally produced a tiny amount - but enough to get the green light to go home.(not my usual problem)

    I have had two prior d&cs since starting my 5 year regimen - but this is the longest I have gone between tvus - so in my head - naturally the lining would be thicker than ever before (15mm v 8-9mm) and starting to slough off. My preferred scenario: I will be good to go through August - when I reach my 5 year mark - I will get a tvu in Sept and then I will then get another  tvu a few months later to check that the lining is decreasing in thickness! ta da! Unfortunately,  In talk with my gyn just before the d&c - he was not as hopeful as me that he wouldn't find something like pre-cancer. So, another possible scenario will be hysterectomy! I tried for the upside of that, I would have to stop the tamoxifen!! like immediately! Nooo, probably not until the hysterectomy, at which point he thinks I would go on an AI!!

    The pathology results unfortunately won't be available  for like 10 days due to holidays etc.

    Apparently I had 5 polyps which were removed, not just the one seen on the ultrasound and the nurses said that in recovery I asked repeatedly if that meant I lost 5 lbs.  told, sadly NO.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013

    Jelson, too funny on the five pounds! You'd be so jealous of me. I woke up almost FORTY pounds lighter from my hysterctomy. Almost twenty pound ovarian tumor, five+ liters of fluid in my belly and they did a partial omentectomy too;)

  • Jelson
    Jelson Member Posts: 1,535
    edited December 2013

    Wow that was quite the load off!!! They usually can't even find my ovaries on ultrasound - because they have shriveled so much? If I do need a hysterectomy I am going to ask my gyn to string up my rectum and bladder? so that I don't get a rectocele and/or cystocele down the road? BONUS!!!!  

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013

    You know something, that huge tumor hid in there, I think for close to ten years and I even had a pretty flat belly. It wasn't until I developed ascites & my belly blew up like a pregnancy that they did, and even then they were assuming liver failure & I did not have high risk behaviors. I have seen quite a few things where docs admit that unless you are very thin they really can't feel your ovaries when they do the bimanual part of your gyn exam. Yes, i had been complaining about hormonal symptoms for years and I had gyn care from several different docs.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2013

    I don't even know why GYNs poke at ovaries. I'm a thin person, 5'5"  105lbs. They can't find my ovaries. Several years ago, I was sent home from a GYNs office after an exam. He said my ovaries were so small he couldn't find them. I knew something was wrong. The left side of my belly was sticking out farther than the right. Neither side of my belly usually stuck out. My PCP sent me to the hospital for an outpatient US. Turned out that I had an 11.8cm cyst on my right ovary & a 5.5cm cyst on the left. So.......why they poke at ovaries, I don't know! Totally useless. I read that it should be dropped from the exam.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013

    what is even sadder is that many of the vague warning signs of ovarian cancer also fall into the "well, at your age that's pretty normal" garbage.

  • Jelson
    Jelson Member Posts: 1,535
    edited December 2013

    just heard from my gynecologist on results of the Dec 18th d&c and it is endometrial cancer - moderately differentiated. hope to hear later today from the gyno-onc to whom he is referring me.........  my cancerventure continues.

  • Annette47
    Annette47 Member Posts: 957
    edited December 2013

    Jelson - so sorry to hear that!   Sending good thoughts that it was caught early and is easily dealt with.

  • Jelson
    Jelson Member Posts: 1,535
    edited December 2013

    thanks Annette, I picked up the path report - am sending out feelers to friends/nurses for recommended surgeons. will call for appt tomorrow if I don't hear anything today. I want this taken care of ASAP so I can be fully recovered and on the water for kayaking in March. I just had a week of husband telling me I can't do this and can't do that post d&c - he has the potential for driving me mad with concern and then when he gets bored with that, he will just get grumpy!! all assuming this had been caught early. oh and the gyn said NO MORE TAMOXIFEN. I asked if he had spoken with my MO and he said, just tell him I told you NO MORE Tamoxifen. I mumbled - for now........

  • Annette47
    Annette47 Member Posts: 957
    edited December 2013

    Well, if you need a hysterectomy (which is the standard treatment for uterine cancer, and when caught early that's curative), I would suspect they would switch you to an AI, anyway presuming they take the ovaries too.   Good luck!   

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2013

    How sad that your GYN won't discuss your care with your MO. As for surgeons, do you have access to a Gynecolgical Oncologist. My GYN(who is also a reproductive endocrinologist) has discussed my situation with a GYN Oncologist. That's where I'd start,if possible. Good luck. I get another biopsy next week. The lining is too thick. Had a D&C with polyp removal 1 year ago. So, here I go again.........Oh yeah, the ovary isn't behaving...

    So, after a hysterectomy, you'll complete your 5years on an AI? Jelson, it looks like you're close to the 5 year mark?

  • Jelson
    Jelson Member Posts: 1,535
    edited December 2013

    CoraLeliz- I apologize for giving the wrong impression - the gyno and MO are friends - my MO recommended the gyno to me when I requested at the outset of taking tamoxifen - someone who could monitor me for uterine cancer. I think the MO is on vacation right now and that is why they gyno said what he did. The gyno did refer me to a GO and I have checked him with friends - and was told everyone in that group is very good - so I am calling right now to get an appt with whoever can see me first. I dreamed about making an appt last night - got one for 5:30AM - even in my dream I knew that was a weird time for an appt - and if it wasn't a dream- I would want to change it. too funny. Good luck with you! stay vigilant. I have DCIS and I don't think they will switch me to AI. and yes, I would have been done at the end of August 2014. An otherwise uneventful tamoxifen run.

  • wisam
    wisam Member Posts: 1
    edited January 2014

    my name is sam an I apologize to be out of the topic but I beagin with tamoxifen 2 month ago so does it make endo cencer from the begining of taken tamoxifen

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2014

    wisam, only about 1% of women on Tamoxifen develop endometrial cancer, but it can cause your uterine lining build up, so you should be regularly monitored for changes by your gynecologist.

  • cport115
    cport115 Member Posts: 4
    edited November 2014

    I hope you have beaten the cancer Jelson! I am on my 6th year in Tamoxifen, been complaining about lower abdomen pain for over 3 years now. I have had several biopsies, all came back fine and my last US showed a cyst and a fribroid, oh yeah, last year my uterun lining was at 15mm, I guess that's a bit enlarged, yes my gyno said that! I had an appt with a pelvic surgeon the next week, my uterus is at 7 months, that was 3 months ago! I was wondering why I couldn't lose my stomach! Surgery scheduled for 12/19 and praying all is benign!! I'll keep you updated after my pathology report comes back!

  • ED2012
    ED2012 Member Posts: 97
    edited December 2014

    after two years on tamoxifen, began experiencing break through bleeding, and much heavier periods. TVU showed thickening of endometrium, biopsy showed polyps, d&C done, developed post op infection that finally led to a total hysterectomy and bilateral removal of tubes and ovaries on 12/1 of this week. Lining was still at 18 cm even after the d&C the month before...MD said uterus was grey when he took it out. I thought I was doing ok on tamoxifen...but my uterus definitely was not! Now will be facing surgical menopause at 49. Hoping I won't go through too much misery. Keeping ovaries not an option as complex cysts were on both sides. Now await path results on all of that. Sigh... If any of you ladies have advice to share, I would be grateful.

    Thanks,

    Liz

Categories