Do you take Tamoxifen? Do you monitor your uterus?

lola12

Hi All,

I actually have two gyn doctors in the same office arguing over what is the correct protocol for monitoring the uterine lining for tamoxifen users. One younger doctor claims that the uterus should not be checked or monitored unless there is bleeding, spotting or discharge and the other older gyn wants to do ultrasounds every 6 months and biopsy if there is any thickening of the lining.

We all know that tamoxifen thickens the uterine lining, but how are you monitored?

Lola

Legomaster225

I had a “baseline” trans vaginal ultrasound about a month into tomoxifen. It showed a little thickening but my dr said it was more likely the fact that I was pushed into chemopause. My periods were regular prior to chemo and were stopped abruptly two weeks into chemo.I ended up having a D&C a month later and the lining was only 9mm which was less than the ultrasound showed. She said we would probably repeat the ultrasound again in about a year unkeds I had issues.

NotVeryBrave

Both my MO and my GYN told me that the standard of care is to NOT do any monitoring of the endometrium while on Tamoxifen - unless there is bleeding. That made me uncomfortable, especially since I'd had regular periods until chemo stopped them. Their reasoning was that there is no proof that a thickened lining while on Tamoxifen needs to be evaluated because there are no guidelines for how thick is too thick.

I had pretty severe lower abdominal pain a few months ago and was sent for a sono. The lining was noted to be thicker than normal for menopause and an ovarian cyst was noted. The follow up 3 months later showed more thickening and changes within the cyst. My GYN recommended a D&C, but while we worked around vacation schedules - surprise, I got my period. 18 months after they stopped.

I was only on Tamoxifen for 3 months and had been off of it for at least 3 months before the first sono. I don't know what's going on. My hormone levels were checked once before the pain episode because we were debating switching to an AI. The FSH showed menopause. The Estradiol did not.

It seems like doctors do things differently in so many cases. I wish I had had a baseline done. I asked for one. But you can only ask ...

gb2115

I was told I would have a yearly ultrasound to measure thickness, had the baseline one last year, so I will get another in November. My understanding though is that it's not standard of care. I do trust my gyn though which is why I am going along with what she wants. She said problems are rare but she's seen them, hence the monitoring.

lola12

Wow, we all have varied opinions on this topic. Painful endometrial biopsies, D&C with anesthesia, uncomfortable transvaginal ultrasounds are all worth it IF needed, but the question at hand is, are they needed. I have asked 4 doctors now, and the treatment plan is different for each one.

My uterus lining is 6mm. Went up 1mm since starting Tamoxifen in 2015 and I now have to decide which of the four different opinions to choose.

A- no more testing unless bleeding, spotting or discharge occurs.

B- Transvaginal ultrasounds every 6-12 months

C- Endometrial Biopsies every 6-12 months. Very painful for me, almost passed out with the last one.

D- D&C or remove uterus to remove worry. Both with anesthesia.

beach2beach

I had a baseline when I started last Sept. on Tamoxifen. I have had another one this past April...he said no changes...during this time I was still getting my periods, then it suddenly stopped. Now I'm wondering since I'm not having a period, therefore not shedding lining, if it's building up. My gyno is pretty cool, if I go in and ask, he would do the sono. I'm going to go back in November and ask him to check it again. He was all for a baseline ultrasound prior to my starting the tamox.

NotVeryBrave

Lola - I don't think I'd do anything more invasive than the US. My lining was 1.2 cm and then 1.6 cm 3 months later. From what I've read - concern in postmenopausal women is for >1.2 cm measurements. The possibility of cancer is almost nonexistent under that cut off. Unless bleeding or discharge is present, monitoring alone (or not) is probably sufficient.

The problem with Tamoxifen is that the response is so variable from one person to another. And people like me who stop having periods because of chemo - they really don't know what to expect.

Rah2464

I started Tamoxifen one week ago and I have an appointment with my gyno next week. I want to make a plan with her to determine how best to monitor my uterine health. Just like we have to monitor everything else now that the cancer bug has bitten.

ksusan

If you have fibroids, they can distort TVUS impressions, so you need a skillful TVUS operator to avoid a biopsy.

tennispretzel

I too was told by my gyn that a TVUS baseline was not the standard of care. I asked if there was a Tamoxifen registry he could report my situation to. A year ago I had a massive hemmorhage...no way it could be called a period...after taking Tamoxifen for 4.5 years. My lining was 16mm three days later and he said the normal for a menopausal woman was 4mm. Biopsy came back negative. Three TVUS later it had shrunk to 12-ish(I was in denial and didn't want surgery) I immediately stopped the Tamoxifen and had a hysteroscopy and D & C in December. Easy procedure/All seemed well. So about a year after the T was stopped June 1 I started a period again which lasted 10 days and again the lining was elevated maybe 3 times normal. Planning another D & C. I am in favor of having a TVUS when starting Tamoxifen. There's talk of polyps and "maybe the Tamoxifen didn't cause this thickening" etc. and there appears to be nowhere to nationally track how many of us have this problem with Tamoxifen.

vampeyes

Anyone getting pelvic pain, pressure, hurts to press on lower abdomen, a crampy feeling - when not due for a period and painful intercourse? I am thinking the Tamoxifen is causing this issue, literally a pain in the you know where!

OTY

Started Tamoxifen 3 months back and have had relatively little sideeffects . My baseline ultrasound and blood work for estrogen and vitamin D levels happened last couple of weeks . Endometrial lining was of intermediate thickness and the ultrasound showed a cyst . Follow up ultrasound in 6 weeks to monitor changes . D & C was mentioned as a possibility . Also estrogen levels were still high . Any views and explanations please ?

Castigame

my experience w tamoxifen was interesting. I was 47 at DX. perimenopause at that time. even though total hyst was scheduled i took it for 7 days. Last day of period was april2nd. the tamox dosage days were about mid Oct and I spotted during those 7 days. my hormone levels were in early menopause range due to chemo. hyst biosy only showed very thin 2mm uterine lining which did not make sense re the bleeding. I knew total hyst was right choice for me as well as Arimidex.

my suggestion is to try D&C first. please keep a close eye on the uterine lining. oftentimes in life you may have to make choices between bad and worse.

ksusan

Tamoxifen doesn't suppress estrogen production. It is a SERM--selective estrogen re-uptake modulator. It blocks the effects of estrogen in some (but not all) body tissues. Thus, we can have high measurable estrogen production, but this doesn't mean tamoxifen isn't working since it affects reuptake rather than production.

Falconer

Vamp eyes,
Yes yes on the pelvic pain and pressure. Yes.
I had an endometrial biopsy on Wednesday bc after 18 mos of no bleeding (had a regular period before starting OS) started-I think- my period again in May. And have had another cycle since. My MO and Gyn only ordered the TVUS bc of the bleed, but they're not concerned about the 9mm thickening... results back this week. And the biopsy is bleh...

rgoossen

Vameyes- I had pelvic pressure for 2 months on the same manufacture...the 3rd month the manufacture was switched and the pelvic pressure went away.

AliceKo

I have been taking tamoxifen since april 2018, I am 42, my period stopped for a few months while I was on chemo, but returned back in a couple of months. In our family periods run late, like into mid 50's. hoping it's my case too. So far, have not noted any issues with Tamoxifen. I saw a gynecologist a couple of months earlier and she didn't say anything. My oncologist did not say anything either, but I am still looking for a gyn who cares.

pamalama

I've been taking tamoxifen since February 2017, right before I turned 41. About a week ago I was having painful lower back/flank pain and went to the emergency room. I thought I had a kidney infection. They did an ultrasound and found an ovarian cyst and told me to follow up with the OBGYN. The ER doctor told me the cyst would resolve so I asked the OBGYN if I should be concerned or needed to be seen. He told me the cyst would resolve and I didn't need to be seen for that, but that the ultrasound showed a thickened lining with cystic spaces and I needed to come in for that. I'm trying not to worry because worry won't change anything, but it's hard, especially knowing the risks of tamoxifen. Chemo stopped my periods in July 2016. I had my second regular annual pelvic exam since starting tamoxifen, in February 2018. At the time I still had not had any periods, nearly 19 months at that time. The OBGYN told me to not be surprised if my periods came back. Lo and behold, a week later! The period after that came like clock work. Then nothing for 4 months. I did a little searching and decided the tamoxifen was probably just messing with things and I didn't need to worry about the irregularity. Until now. Now I'm worried that maybe I had signs that things were going on in my uterus and I ignored them. I'm seeing the OBGYN this afternoon. Not exactly sure what he's going to say, but I suspect he will either be recommending biopsy or hysterectomy. I had not had any kind of monitoring of my uterus up to this point, which makes me wonder how the thickness has changed over time. There was never a baseline to compare to.

Moderators

pamalama, thanks for joining us here, and sharing what is going on. We are thinking of you today, and would really like to hear what they recommend to you. Hoping all is good! ! Let us know!

Rah2464

I just had my initial consult with my GYN today after starting Tamoxifen two weeks ago. She communicated to me that Tamoxifen will alter the lining of your uterus so she felt that a baseline imaging was not needed as we already know there will be some level of changes. She did however clearly state that some changes in bleeding patterns should be evaluated. Since I am perimenopausal and my periods can arrive 2-4 months apart she wants me to watch for an increase in flow or duration of my period, or to advise if i begin to get more frequent periods, for example if my periods became monthly again. She also shared with me that she is a breast cancer survivor herself (four years) and understood my concerns. So I will begin with the observational approach she suggested.

ksusan

Rah, I like your GYN's style.

Disneygirl44

Wow, this is everything that I am going through now. I’ve been on Tamoxifen for about 4 years, and I’ve tolerated it fairly well. Not that it’s all been fun - just tamoxiflashes, missed, irregular weird periods sort of thing. I’m 45.

My US and TSUS came back with a 15 mm uterine lining and a 2.9 cm cyst. My appt with new gyn is next week but reading your posts make me realize I should expect more. It’s been really hard to find info on this with the tamoxifen wrinkle. Thank you all

pamalama

Saw the OB on Monday. I’m scheduled for a hysteroscopy D&C in a couple weeks. We’ll go from there after the pathology comes back.

LAmargarita

Wow! so much info that I haven't seen anywhere else. Thank you all!

I see my MO and my GYN in about a month and I'm adding uterus testing to my list of questions before I'm too far in. I started tamoxifen about 2 weeks ago.

Jewel15

Good to see some discussion regarding this. I was dealing with some painful fibroids a few months after starting Tamoxifen (2016). Being 40 years old, my MO suggested that I consider having my ovaries removed to decrease estrogen production. She noted that she would eventually switch me to Letrozole. She said that if I chose not to remove my ovaries and stay on Tamoxifen, monitoring of any fibroids and/or other uterine concerns would need to happen about every 6 months.

I opted to remove my ovaries but keep my uterus which both my MO and gynaecologist supported. My gynaecologist removed my ovaries in Jan 2017 and reminded me that, if in future, I experienced any bleeding, I would need to seek follow up.

I’ve noticed over time that I have a discharge that has an unusual odour and a slight brown tinge. Only recently in the past couple of weeks has it become more apparent that my spotting has increased where I’m now seeing blood. I’m also dealing with menstrual-like discomfort and bloating

I had the transVag and pelvic ultrasound last week (ordered by GP at a clinic). The report came back noting two fibroids and thickening of the lining. Follow up was suggested with gynaecologist.

Called my MO to sort out next steps. RN called back and left me a message stating that the MO wants me to stop Tamoxifen and made the referral for me. I should be receiving a call from the gynaecologist office within a week to book in.

Seeing my GP tomorrow (originally scheduled for review and referral). Hoping to find out how many mm of thickness was reported.

Now, I wait. Anxious and having panic attacks during sleep (again!). Was hoping to keep moving forward but there always seems to be “something “ that pops up and pulls me back to cancer.

Has anyone had a similar experience?

Thanks for listening and sharing.

Bigbluefish

I started tamoxifen 2 years ago. I had a baseline tvus at that time. Ive maintained fairly regular periods since. I do have bloating and pelvic pressure. At my annual gyn visit i was told my uterus was large measuring 4 months!!! I can feel it to be honest but thought i was just getting fat. Im scheduled for tvus teusday, but she has told me to expect hysterectomy with removal oftubes and ovaries in my near future. Very anxious.

Spoonie77

I can only hope at some point there will be an exact standard of care for all of us! It's bothersome to me that so many of us ask our Gyn/MO about monitoring and we are repeatedly told no, not unless something "happens". Ugggh.

Thank you ladies for sharing your stories. IMO it makes sense to have a baseline to compare to if/when things change.

Have any of you had hormone panels/testing done by your MO/Gyn before starting Tamoxifen?

There's been no talk of that from mine and that seems like another thing that would make sense before starting on Tamox.

kbram

My gyn is the best! While yearly monitoring via tvus is not covered by my insurance and i believe also is not the standard of care, she does it any way. She winks and says, you are having pelvic pain, right! She is an ob/gyn that works with breast cancer patients, so she gets it! So far, so good! For years, my primary did my pap smears and exams. Since starting on tamox (after five years on Aromasin and a recurrence) my oncologist referred me to her to monitor for any problems. I just love her....wish everyone was as lucky!

Kathy

Spoonie77

That's wonderful Kbram!

kbram

It is wonderful, Spoonie! If a side effect of Tamoxifen is possible thickening of the uterus and cancer, then why on earth is monitoring for it not covered? It does not make sense to me and I found it hard to believe when I found out. Keep pushing for it girls!

Kathy

tennispretzel

Being postmenopausal I went to the gyn when bleeding started again July 2017. I had been on Tamoxifen for 4.5 years. Stopped Tamoxifen.

Bled again in June 2018. During that year between July 2017 and June 2018 I had two negative uterine biopsies and a saline sonogram and a D & C which showed only a polyp. Many TVUS showed thickened lining.

Now in 2019 again, like clockwork, in June a period. Lining under 3. Seems very strange after being off Tamoxifen for two years!!