Next steps after uterine lining thickening

gemini4

I've been on tamoxifen for 19 months now, and I haven't had a period since 10/29/2013 (I turned 50 in May, so I was probably on schedule to hit menopause vs it being triggered by tamoxifen). I had a screening pelvic ultrasound last week per my breast surgeon's recommendation to have this done annually (I had one done back in January 2013, shortly after the BC diagnosis, just to see if everything looked ok and for a baseline). My GYN called yesterday to tell me that the uterine lining is considered thick. I am not alarmed or surprised by this.  She said we should definitely do more testing and said my options include endometrial biopsy or D&C. After our discussion we decided to start with the lesser invasive biopsy (mostly because I've shown zero symptoms such as spotting or cramping). Just wanted to check with you ladies here who have gone through this to see if this seems like the best approach. Thanks!  :-)

Ridley

Gemini4 -- I just had an endometrial biopsy last week.  I had uterine thickening, but then also had two longer periods in August and October (hadn't had a period November last year just after I started on tamoxifen.)

I wasn't given a choice to do a D&C, but not sure I would have gone that route anyway. 

Have you had that kind of biopsy before?  I hadn't and wasn't prepared for how much it hurt -- not meaning to scare you and the pain only lasted while they were doing it, but if I had known about the pain, I think I would have popped a Tylenol or two before the procedure

 

 

gemini4

Hi Ridley -- thanks for your reply. My GYN told me to take 600 mg of ibuprofen before the procedure, and I will also get an rx pill to take before it to help dilate my cervix (misopr-something). 

Ridley

Sounds like you are well prepared -- I ended up going in for a consult and we did the biopsy at that appointment -- I'm going to make note of the cervix dilation med in case there is a next time!

farmerlucy

Hi Gemini! My gyn is watching me closely too. In the past year I've had two biopsies and a hysteroscopy. The biopsies were spur of the moment and certainly not fun so pain meds are a good idea. The good thing is that it is over quick. My thickening varies. Last time it was 1.5 cm thicker. The time before it had gone down. I see her again next week. I've resigned myself to do whatever she suggests. All along she's said she suspects it is much to do about nothing. That is the attitude I'm adopting. Take care. Let us know how things go.

coraleliz

I've had biopsies & they aren't bad. I wait until I have bleeding to go into see the GYN. He suggested I start coming in sooner(every 6 months). I was waiting until the spotting turned to bleeding & I needed to wear a small tampon. Then it's time for the hysteroscopy/D&C & I always have a polyp that needs to go.

chknfeet

Hi Ladies,

I've been on tamoxifen for 3 months now. I had a baseline done right before I started and my follow up today. During the baseline, my lining was at 2.5mm. Today it is at 19mm. That is a huge change in a very short period of time. I have not had my period since starting chemo in April. No spotting either. Slight pressure at times in the area. My OBGYN is recommending a hysterscopy, not a biopsy. I'm going to call her in the morning to ask why (kind of in shock at the office at the thought of another cancer), but do you ladies have any insight? I'm 38.

SelenaWolf

While tamoxifen has an anti-oestrogen effect on breast cells, it has a pro-oestrogen effect on endometrial cells. That means that while it will help prevent breast cancer recurrence, it may cause endometrial changes. This is a known, and well-documented side effect of tamoxifen. Endometrial changes can include thickening, polyps and - very rarely - endometrial cancer, which is why regular screening is a good idea while taking tamoxifen just to keep an eye on things. Your OB/GYN is being careful and meticulous, but it doesn't necessarily mean that something sinister is happening.

farmerlucy

Saw my Gyn today and she released me until next summer. Hopefully by then I'll be post menopause on an AI and we can forget about all the extra screening. My gyn said the effects of tam on the uterus goes away soon after you stop taking it - has anyone heard anything like that?

coraleliz

chknfeet- the hysteroscopy is a way of viewing the inside of the uterus. Perhaps your gyn will "biopsy" or remove anything found that is abnormal. There is a procedure I sometimes get. It's call a hydrosonogram. Fluid is instilled into the uterus & it pushes the uterine walls outward. Then they do an ultrasound. It's good for picking up polyps.

Sometimes I get a "biopsy" where a thin (whirly-gig) catheter is inserted into my uterus & the specimen is obtained. For the thickened lining, I've been getting a D&C at the same time my polyps are removed.

I've got just under 2years left on tamoxifen(I'm stopping at 5). I'll probably really slip into menopause sometime soon. Switching to an AI seems like I would just be trading problems. My BS's $.02, is that it would be a bad choice for me because I'm "so active". She said there are 80yr olds on tamoxifen. Now, my MO, was willing to just call me menopausal without any blood work & switch me to an AI. I told him I wasn't comfortable with that because of family history of late menopause & I had a period less than a year ago on tamoxifen.sigh

Ridley

Update -- I received my endometrial biopsy result this week and thankfully, it was negative.  She also did a CA 125 blood test and that was in the normal range.  So, one more ultrasound this coming week to get a better look at what is going on re: ovarian cysts and fibroid, and I see her again in a month or so.

Have a good weekend everyone.

hjpz

I have been warned about the thickening effects of my lining due toTamoxifen by both my OBGYN and my Oncologist. Due to my BRCA-2 diagnosis and the fact that I have had breast cancer twice I have started to have pelvic ultrasounds every 6 months. I am now 42 years old but the first time I took Tamoxifen I was 29. I did not notice near as many effects the first time around on Tamoxifen but this time I have developed ovarian cysts and also a cervical polyp. I am not sure if it is because I am older now or why I am having more issues this time. I just keep in close contact with my OBGYN and am expecting some weird reactions at this point. Best of luck to you!

chknfeet

I had my 3 months post tamoxifen follow up with my onc today. She thinks the hysterscopy and D&C are unnecessary unless I have bleeding. I'll be making an appointment with another OBGYN or a second opinion. So many doctor appointments!

gemini4

Wanted to post a follow-up ... I had the endometrial biopsy week before last. It was uncomfortable but not unbearable, probably thanks to the cervical ripening rx pill I took three hours prior and the 600mg of ibuprofen an hour before. I just got the call this morning that the lab results were perfectly normal and that the thickening was very likely due to the tamoxifen.

Nice to get a phone call with good news! :-)

Jayne123

hi I'm new to the forum but joined because I've recently started on tamoxifen (3 months ) and although no bleeding I have had a fair amount of dragging so went to dr who sent me for a scan and my womb lining has thickened to 19mm so a lot in a very short time , like yourself .my gynae consultant has said it looks ok but has offered me a biopsy to put my mind at ease but my dilemma is how much thicker before it should be stopped!! I'm tempted with the hysterectomy route not that I've been offered it ,but as I'm in my 50s I don't need it . Dr did say if I'm this sensitive to it its probably doing its job well with the bc part of things!!!

Moderators

Hi Jayne! Welcome to Breastcancer.org. We just wanted to welcome you to Breastcancer.org, and let you know that we're so glad you've found our community, and we hope you find the support and advice you need here.

Best,

The Mods

Runnergirl2013

Well I went a year and three days without a period and now i got mine on 12/31. I called my onc and he wants me to stop Tamoxifen for a week and see my GYN for an ultrasound or biopsy. I am scared but it seems like this happens a lot. Did your doctors have you stop Tamoxifen while you were figuring this out?

hsmac

Hi! Happy to find this discussion! In March I will have been on TMX for 7 yrs!! At 5 yrs my Onc and I decided to continue due to new research, and I had two friends that stopped at 5 and ended up with recurrences... So, I stuck to it. For no apparent reason I did have my first trans.vag.ultrasound last month. The lining of my uterus measured just over the normal range. Didn't get a #. Doc called it "Low-high". I'm 48 and my cycles have been erratic for the last 2 yrs, but I still have about 5 periods a year. So, AI is not an option. There was a time when I thought I'd be on TMX forever, but now with this slight issue of my lining, I'm considering stopping this summer. I'm going to have another ultrasound in March and will discuss biopsy then. Reading all of your posts reassures me that the result will be good news. Obviously, my next topic for my Onc will be stopping TMX. I've been trying to find info on what side effects may be like when STOPPING TMX. Only finding info about effects of taking it. Won't we go thru some kind of "withdrawal"? I do currently suffer from hip/joint pain, jaw line break outs, erratic sex drive and the random hot flash. But these are all things that could easily be attributed to getting older and being perimenopausal. Anyone notice any big changes after stopping tmx?

Pokemom1959

RunnerGirl - I had the same issue. I've been on Tamoxifen for 8 months and went 363 days without a period. Then it started - nothing out of the ordinary - just regular period. I had an exam with my PCP and she said everything looked normal. Had an abdominal and transvaginal ultrasound and everything was normal. Still going to follow up with a gyn

hjpz

hsmac - I was on Tamoxifen for 5 years (the first time) and had no side effects or issues when I stopped taking it

mammalou

I have a question for anyone out there. I had uterine thickening on Tamoxifen. Ultrasound showed 9.8 mm lining. I had a biopsy done in March. Doctor e mailed me that it was benign, but they wouldn't mail the path report. So, today while seeing another doctor, I asked for it and she printed it for me.

It said the sample sections reveal multiple levels of scanty endometrial tissue without underlying stroma. Inadequate sampling. They didn't see cancer in the sample they got.

To me, this looks like the sample was too small. Should I have any confidence in this?

coraleliz

mammalou- what kind of follow-up will you be having? My experience is that my lining only got thicker, caused bleeding & polyp formation. This ultimately led to D&Cs. If you can't get answers out of your current GYN, will your insurance allow you to see a gynecological oncologist?

JoTro

Ok I'm in the same boat - had trans vaginal ultrasound showed Fibroid/s largest one is 5cm, so I assume I have more than one! Also a ovarian cyst and a 11mm endometrium. I'm off to see the Gyn/specialist tomorrow so will be interesting what they recommend, I'll be super p*ssed if they take the wait n see approach.

It appears Tamoxifen is an antagonist for some of us - stupid breast cancer.

mammalou

JoTro..good luck tomorrow!

JoTro

Thanks Mammalou

I was given an endo biopsy, gyno said the tissue looked healthy, but now I'm on-off bleeding Day 5 so if this continues I will A/worry in secret and B/ ring the gyno

She has recommened a total abdominal hysterectomy: the uterus is 14week gest sized, too big to get out through vagina and lapro in her opinion. Also with a new cervical polyp entering the equation in the past few weeks since scan things are getting worse down there.

I'm booked 18 June for the Hyster. I am so over all of this cancer shit, infact I don't give it too much of my time over this, it's robbed me all of last year.

Mamma where are you at with all of this? You think it's the Tamoxifen too?

MidLifeCrisis

Somewhat off topic … are you all seeing a gynecologist who specializes in woman w/a history/high risk for cancer? I haven't even begun to search and it never crossed my mind that there are specialists out there. I saw my regular gyno just shortly after stopping chemo (routine/annual) and she seemed very laissez faire about the whole cancer dx and possible impacts of going on Tamox. I want to find someone who will take it seriously and be more proactive than reactive.

JoTro

MidLifeCrisis I agree! I live where we don't have specialist Gyno Onc but my Gyno has been through Breast Cancer and Tamoxifen herself so I take it that's a good sign. The thought is never far from my mind about a recurrence or mets. We lost a lady out of our March Chemo group 2014 after being dx stage 1a she progressed to stage 4 and passed away only a month later from liver failure so the reality of our situation is highlighted recently. I'm actually kind of looking forward to not having anymore Gyn issues less cancer risk to worry about.