Thickened endometrium and tamoxifen

Options
pinkgirl09
pinkgirl09 Member Posts: 19

Hi I had an ultrasound done and the doctor said I have a thick endometrium of 15 m probably due to 6 and a half years on tamoxifen. Now I need a biopsy. I am scared now. Did any other ladies have the same issue

Comments

  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited August 2018

    pinkgirl09,

    It only took me about a year and a half to get to 17 mm. (I'm assuming you didn't mean 15 metres. 😉) Endometrial biopsy showed inflammation but nothing malignant. I hope the same for you!

  • pinkgirl09
    pinkgirl09 Member Posts: 19
    edited August 2018

    Hi thank god everything showed well for you I am hoping the same for myself. Yes I meant 15 mm. I am thinking of stopping tamoxifen, are you still taking it

  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited August 2018

    I am still taking the tamoxifen. I did stop for four weeks during that whole ordeal. Monitoring the uterus via TVUS and considering a hysterectomy but I'm very reluctant to have another surgery. Also rather reluctant to have another cancer. I have a large uterine fibroid and other smaller ones. It may be possible to have a minimally invasive procedure,which would be way better, but still there are risks of surgical complications and anesthesia.
  • pinkgirl09
    pinkgirl09 Member Posts: 19
    edited August 2018

    Yes I understand your concerns I as well have the same concerns. Good luck and hope everything goes well for you

  • Egads007
    Egads007 Member Posts: 1,603
    edited August 2018

    I started to have bleeding episodes. They found that my uterine thickness had hit 17 mm after 6 months of tamox. I went through a battery of imaging sessions (and an in office removal of a few cervical polyps) and eventually ended up getting a D&C. Apparently my cervical polyps had a number of big brothers and sisters in my uterus. All benign. The D&C was 3 years ago and I remain steady at 4-5 mm. Hang in there Pinkgirl, I've read many of the same story on the threads.....a vast majority were benign. I'm crossing my fingers your results are clear...keep us posted!

    Maybe it's something in our Canadian water :)))))

    Edited to add: *waves at Pixi(dust)* My D&C was done with twilight anesthetic, and it was more of a scrape than highly invasive. I was partial awake through it all. Up and out in 2 hours. 1 day rest and I was back on track.

  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited August 2018

    Hi Egads! Glad the procedure went well for you. Is that the same sort of anesthesia they use for colonoscopies? I think I had that for my excisional biopsy (lumpectomy) and it was fine. For the longer surgery, mastectomy + DTI reconstruction, it took me forever to recover my brain function (still working on it ;) ). Don't wish to repeat it if I don't need to. For a hysterectomy I would have to be under for at least that length of time. On the other hand, I don't want to play with tamoxifen and cancer either...since cancer, always choosing between bad option. Sigh.

  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited August 2018

    Thanks, pinkgirl! Let us know how things go for you!

  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited August 2018

    Hi, all.

    My story is that pre Tamoxifen ultrasound showed a thickened endometrium, which turned out to be benign polyps (also removed under local anesthesia in office). Since I am postmenopausal, I opted for a total hysterectomy (robot assisted, healed and back on track 9 weeks post op). Surgeon said I made the right decision as path report on the uterus showed atypical cells with a 10% chance of becoming malignant! Have had 2 premalignant colon polyps so it feels like my body is determined to have malignancies! Maintaining vigilance...

    All that to say that for me the hysterectomy was the second major surgery in 5 months but both recoveries were essentially uneventful, so if you are facing a choice please know that the second surgery may well be helpful for both mind and body.

  • pinkgirl09
    pinkgirl09 Member Posts: 19
    edited August 2018

    Thank you ladies I will keep you posted as soon as I know

  • Egads007
    Egads007 Member Posts: 1,603
    edited August 2018

    Pixidust- yes the same as with colonoscopy, I was given a choice between the ‘twilight’ or being knocked out cold. There were some uncomfortable moments, but just told doc (as she instructed) to back off for a moment and catch my breath...I must say that for most of it I was half asleep. So worth the faster recovery. Wow, I don’t blame you for being reticent on going with a full blast after what you experienced! Sorry to read that! Talk to your doc about the light version....much safer.

    Beaverntx - glad you made the right choice, whew! I told my gyn that if my lining shoots back up again I’ll be doing the same as you...why chance it. Cheers to the vigilance!

    Pinkgirl....still rooting for you! Love your profile pic

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2018

    I only took Tamoxifen for 3 months and found out a few months later that my endometrium was 1.2 cm. The follow up US 3 months later showed it was up to 1.6 cm and my GYN started talking options. Her opinion was that a D&C would be best as an endometrial biopsy could potentially miss an area of concern whereas a D&C would remove all tissue for pathology. And then I got my period - 18 months after chemo stopped them.

    So now I'm trying to figure out when to do a repeat US. Best option would be right after my period - but haven't had another one!


  • pinkgirl09
    pinkgirl09 Member Posts: 19
    edited August 2018
  • Veeder14
    Veeder14 Member Posts: 880
    edited November 2018

    I had a trans vaginal ultrasound today since being on Tamoxifen for 4 months and now my lining is 17 mm. Prior to that, my lining was 2 mm and I'm post menopausal. The report said a 17 mm lining is not for a post menopausal patient. Described kind of strangely but I'm not sure what to do. The Onc Gyn says the Tamoxifen benefits outweigh the risks but it doesn't seem like it to me. I really don't want surgery or to have continual problems. I don't have any bleeding or pain and the lining doesn't indicate any malignancy. I'll talk with my MO but it sure seems like the choices aren't very good and now there's damage to my lining.

  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited November 2018

    Ah, Veeder, if it isn't one thing, it is another. My earlier post on this thread discusses my decision, and I opted for the surgery. If you'd like more information or to have a listening ear, as it were, feel free to PM me.

  • Veeder14
    Veeder14 Member Posts: 880
    edited November 2018

    Thanks Beaverntx. I attempted to add you as a friend, did you get the request.

  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited November 2018

    Veeder, I have not seen your request. Am I not looking in the right place?

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2018

    Veeder - Why did you have the US done? And what does the GYN ONC want to do with that info? Usually, it's either watch or biopsy. Or possibly D&C or hysterectomy.

    I had a thickened endometrium found several months after stopping Tamoxifen. I'd only taken it for three months. I had the US because of pain. They just watched it for a couple of months and it increased. But then I had a period (18 months after none with chemopause). The lining was normal (3mm) at last check.


  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited November 2018

    Veeder, I added you to my friend list.

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited November 2018

    I've had two D & C's this year because of thickened endometrium. March ultrasound measured at 9mm biopsy showed nothing. October showed 19mm and my recent D&C found a polyp but no malignancy. My MO switched me to Aromasin as I cannot keep going having 2 D&C's s year. I had no pain or cramping, no bleeding and no other issues with tamoxifen. No period since chemo started. I do test postmenopausal now so I guess I'm done at 52. Is an AI an option for you Veeder? It has its drawbacks too though. I already have osteopenia and I'm tiny. So just another thing to worry about.

  • Veeder14
    Veeder14 Member Posts: 880
    edited November 2018

    Hi Not Very Brave and Legomaster225

    I requested the ultrasound to check on my uterine lining because after 11 years of menopause I could feel something going on down there, plus the CA 125 test result doubled after being on Tamoxifen only 3 months. The doctor wants to recheck it in 3 months but if it grows at the same rate as now, it will be awfully thick. Als aren't an option for me (although I'm having another bone density test soon) because I've got severe osteoporosis and I doubt if it's any better. I'm going to repeat the CA 125 test in December and another ultrasound in early January. Unless the MO thinks this is an emergency. I wonder if the grow will slow down since my body has adjusted to the Tamoxifen. I'll let you guys know what happens next.

  • MinuteAtATime
    MinuteAtATime Member Posts: 76
    edited November 2018

    Hi All: I'm having the same issues--thickened uterine lining, plus hypervascularity and have only been on Tamox for just over a year. I'm having my 3rd uterine biopsy later this month b/c I was having monthly bleeding again (though in perimenopause) .. I'm guessing I will have to choose between a hysterectomy and sticking with Tamox or switching to AIs (not sure if I would need Lupron b/c not completely menopausal yet), but I'm afraid of the osteoporosis and joint pain. Doc says she can give me meds for bone strengthening which I'm sure have their own side effects. OTOH, I read that hysterectomy can lead to bladder issues like leaking and reduced orgasm. Anyone have that experience?

  • pinkgirl09
    pinkgirl09 Member Posts: 19
    edited December 2018

    personally I think that the problem is the tamoxifen although doctors don’t agree

  • pinkgirl09
    pinkgirl09 Member Posts: 19
    edited December 2018

    I had a biopsy done because my endometrium was thickened due to tamoxifen and the results were they didn’t find any cancer cells. After taking tamoxifen for 6 years I decided to stop tamoxifen.

  • 3bears
    3bears Member Posts: 254
    edited December 2018

    hmmm. I’m waiting to see a gyno onc for a second opinion right now. My gyno wants to do a complete hysterectomy on me due to thickened uterine lining caused by tamoxifen. He’s already done a D&C and it barely helped at all. I’ve been on tamoxifen for almost 2 years. It’s hard to know what’s best. I already have annoying night sweats and hot flashes. I also have cysts on my ovaries . I’d rather not have a hysterectomy but maybe it’s worth it. I’ll be 50 in 2 weeks

  • Veeder14
    Veeder14 Member Posts: 880
    edited December 2018

    Hi 3bears,

    Did they tell you how thick your lining is in mm? If I had been at the end of taking Tamoxifen with a 17 mm thickness I probably would have tried a D & C first before hysterectomy. Sorry the D & C didn't help you? Do you know why? Has it been done more than once? I don't know much about that procedure.

    Hysterectomy is major surgery, and takes time approx 6-8 weeks to recover. I'm 2 1/2 weeks out. Removing the ovaries is an added surgery usual done at the same time as hysterectomy if you want both. I'm BRAC2 so had my ovaries removed as well to prevent ovarian cancer.

    Is there any chance you can or want to switch over to the Als instead of Tamoxifen? If so, maybe you can try the D & C again and avoid major surgery.

    Just an added observation: Tamoxifen lists a 1% chance of endometrial cancer which seems misleading as so many women get thick lining from taking it much more than 1%. I was surprised it happened to me so quickly. Found out Tamoxifen actually gives the uterus estrogen, didn't know that starting out.




Categories