Tamoxifen & thickening of uterus lining

Maeve

Hi, Just been for a smear (PAP) test today and the nurse told me I had an unusually thickend lining on my cervix, I know that Tamox. can interfere with the uterus in different ways but just wondered if anyone experienced the same problem.  I've been on tamoxifen for just over 18 months and would love to her from anyone who has had uterus problems as a result of tamoxifen.  Many Thanks

kuchagirl

Hi,

My endometrial lining thickened up considerably around 10 months after I started Tamoxifen, as seen on ultrasound.  My gynecologist says there's nothing to worry about.  Also, I've googled around for medical studies on Tamoxifen's impact on the endometrial lining, and it is normal for the endometrial lining to thicken and to stay thickened as long as the patient is on Tamoxifen.  I did have one episode of spotting (which led to an ultrasound which showed the thickened lining), but have not had any spotting at all in 12 months.

Kuch

sherryw

Maeve,

I had the same problem, my uterus lining changed significantly while I was on tamoxifen.  It went up to 9 cm thick, so since I was 42 and my BC was a strong ER positive and I was not planning anymore children so we decided to have a hysterectomy.  That way I would not have to worry about what the thickening was actually from, the tamoxifen or something more serious.  But yes the tamoxifen can cause a thickening of the uterine lining but if you and your doctors keep an eye on it you will be just fine.

Maeve

Thanks so much for sharing, I also had an instance of spotting a year ago and haven't had any since then, thanks again, it's always a relief to hear that all is probably 'normal'. 

pod1257

My uterine lining was up to 7-8mm and this was deemed "moderate thickening" on the gyn report, after 1.5yrs on tamox. I also had my fibroids grow which has caused bowel problems off and on. I've read that the uterus usually thins down a little after stopping tamox.

Julie

Member_of_the_Club

I've had slight thickening, so no big deal in my case.  This is very common and should just be monitored.  Had anyone suggested an ultrasound?

Jorf

I've developed fibroids (I think I had them before all of this but never went looking). We keep an eye on them. They Very Rarely (as my gyn assures me) turn cancerous but it is possible with the tamox. It's one of the reasons they're looking into raloxifene instead (now being used for primary prevention but, I think, being studied for secondary prevention).

sauerland9818

Has anyone been taken off of Tamoxifen for uterine thickening.  I started in June 08 and have been absolutely irregular since.  Before my DCIS, I was on Progesterone to level out the periods due to thickening, "proliferative endometrium" they call it.  I saw my Gyn today after 32 days of spotting.  They did the transvaginal ultrasound (I have two uteri) and found one side was 19 mm, the other 18 mm.  They did a biopsy and I should get results by Friday.  This is my year anniversary since DCIS was diagnosed, so I freaked a little about all this.  Anyone else had these experiences?  The thickening could also be related to thyroid (yes), overweight (yes), tamoxifen (yes) and peri-menopause (pretty sure that's coming.)  

cheryl58

Hi!

I have been on tamoxifen for 2-1/2 years now.  I have had four transvaginal ultrasounds and four biopsies in that time because my lining is so thick (13 mm) and I have a big ol' fibroid that I have pretty much had for as long as I can remember.  So far (thank God!), all biopsies have been negative for anything other the thickened lining due presumably to the tamoxifen.  I did also have just a very, very tiny bit of spotting for a day which prompted the fourth biopsy.  I am in what my oncologist calls chemopause because my estrogen levels still are "perimenopause" levels.  I am having more and more hot flashes though but only at night....

RobinWendy

Yes, I have been on Tamoxifen for 7 months now and my last CT scan did show a thickening in the endometrium lining.  I will be going to see my gyno for my yearly check-up and will tell him what's going on and hear what he has to say.  Hopefully, he will say what the doctor's of the above posters said, "Don't worry about it".  I'll let you know when I see my gyno.

Robin

Maeve

Let us know how it goes RobinWendy... My oncologist is sending me for a scan, he says he's not concerned but would just like to check it out.  I'm out of the country until June so he's doing it when I get back, I guess that gave me peace of mind as he's kinda on the ball with scans etc, so for him to leave it for a few months tells me that he's not that worried about it.

Cheryl, I've had a tiny amount of spotting - for one day about 4 months ago and then it happened again yesterday, I haven't mentioned this to my oncologist as I thought perhaps I was having a very very slight period, periods have ceased since 1st round of taxotere.  Is this something I should bring up with my onco?  Just wondering why it prompted them to do a biopsy?

jdg1

Anyone have an oophrectomy and still have some bleeding?  My ovaries were removed last June and today I noticed some bleeding. 

cheryl58

Hi Maeve -

Yes, I would bring it up to either your oncologist or your GYN doc.  It is always better to be safe than sorry.  I think in my case it was the thickened lining that they again saw on the ultrasound, the chemopause since my first dose of adriamyacin, and my age of 50 now.  I still don't know "why" the spotting happened, just that the biopsy was negative.  I think they just want to check out any spotting that occurs after not having a period for so long.  My GYN is not concerned at all now after the biopsy, and my oncologist said it was probably just some "sloughing" of the lining.  I know in my heart that I should probably have a hysterectomy, but I just cannot mentally go through that right now.  I am currently living in the land of denial of ever having had bc.

 Take care Maeve!

Cheryl

trigeek

Mine probably is a rare occurence but after being on tamox for 5 months my ovaries developed scary looking complex cysts, uterine thickened got larger and had a oopherectomy, hysterectomy luckily everythingwas benign. I strongly believe tamox caused the whole upheavel although some would say 5 months is not enough for it to cause damage.

I miss my ovaries everyday even though I was strongly er/pr+, but was not given a choice to keep them.

PT63

Hi

I also had uterine thickening and fibroid growth on Tamox.  I was monitored every 3 to 6 months via Transvag. ultrasound and had one biopsy.  My fibroids just kept growing and growing although I did not think I was having symptoms.  Finally my gyn-onc said that the fibroids were really getting huge.  He said could take it out now and do it laproscopically or wait until I had symptoms and he would probably have to do a full incision.  I chose the former.  I don't regret it at all and believe it or not my internal organs are working much better after surgery.  Without being too graphic, I am now much more "regular".  I guess it was such gradual onset I didn't realize that the fibroids were actually causing some pressure and blockage.  Now that they are gone, I feel much much better.  I had my ovaries taken also since my tumor was highly ER positive.

My suggestion to anyone on Tamox. is to keep monitoring the uterus.  It is annoying to keep going for tests but it may be of benefit in the long run.

Anonymous

trigeek-----I also had ovarian problems (cysts) while on tamox for 16 months (but started after about only 6 months)--unfortunately grew very large and ruptured necessitating a TAH/BSO---probably very rare as you say, but I would strongly recommend women on tamox have a yearly transvaginal ultrasound to monitor BOTH the uterine lining AND the ovaries,

Anne

Maeve

Thanks Cheryl,  really appreicate your advice, will definately make a point of mentioning it to him,  I'll let you know how it goes... I know how you feel about not being mentally ready for things, it took me 1 year to go for an overdue pap test as I just didn't have the strength and living in denial land was so much easier, thankfully pap test all clear  .   Although living in denial land is not recommended!

Just wondering how a biopsy is different from a pap test, sorry that's probably such a daft question but I'd really like to know what the difference is between them?

Anonymous

Maeve-- a biopsy is where they actually take a piece of tissue ( from the area in question--not sure if you're asking about cervical or uterine biopsy) to be looked at under the microscope by the pathologist---- during a pap smear they just collect cervical cells by swabbing the cervix, no cutting involved. (that's called a colposcopy--I've had one done, just a little pinching and cramping). I think for a endometrial biopsy, they dilate the cervix a little bit and take a sample of the uterine lining--again, probably not too comfortable, but doable.

Anne

Dips

Hi.. This is my first time joining  a group.. I've got a huge concern.  I have been taking tamoxafen for about a year. I finished Chemo last year 2008 April and started Tam. shortly after. Everything was fine, until I was starting to get really heavy periods.. I mean had a tampon on and I was changing my pad every hour.  I recently went to the doctor and told him, he decided to do an ultrasound plus a transvaginal.  So 2 days ago I went to get it done, and the tech was asking me when was ur last period.  Didn't think much as to why she was asking. But towards the end of the session, she said "Don't be suprised if the doctors wants to do more tests, taking your history into consideration" Well obviously i'm going to worry about that comment, so I asked her is there sign of cancer.. she said no, but told me my Uterine Lining was really thick.. even too thick to be at the middle of my cycle. So I waited a day, that night my doctor called and told me the same thing... My uterine Lining is 2.8cm... (28mm) he said he is very concerned and that he would like me to go for another ultrasound in 3-4 weeks. We hung up the phone at that point... a few minutes later I called back and said I would like to get the Biopsy done instead of waiting for 4 weeks. I could imagine going through so much time.   So I've got a biopsy scheduled for Tuesday next week.  I'm really scared and worried... I am 32 years old and would love to have another baby.  I'm blessed with 2 gorgious kids and I really am thankful that I have a family, but really would like to have another one.  

Can anyone help me with this.. is it normal to have a lining that thick? I don't know where to get these answers. I'm really worried and hope I don't have unterine cancer.....Has everyone been getting regular periods since they have been on Tamoxifen?

 Hope someone replies..

 Dips!

Lolita

Hello,

I don't know how thick the normal uterine lining is, but I have also had very heavy periods on Tamoxifen and have grown worried about it.  They told me I only needed to get checked by ultra sound once a year, but I'm not sure.

I think you are wise to get the biopsy done so quickly-not necessarily because I think anything is wrong but to spare yourself the extra worry.  My sister just went through a uterine biopsy and they quoted her the same figure that they quoted me for breast cancer:  80 percent of women who have biopsies for uterine cancer find that their condition is benign. Good luck to you.

Lucky47

Just got back from appt today....ultrasound that showed abnormal thickening of uterine lining.  I started bleeding two days ago.  Now I need a biopsy.  Have been on Tamoxifen 3 1/2 years.   All I can think of is something I read before I started Tamoxifen....trading one cancer for another.  Going to be a long weekend. 

Harley44

Lucky  and all

Last year, I had a trans vaginal u/s  and I also had uterine thickening.  I was referred to an gyn onc. and he said that Tamoxifen causes this... no big deal he said.  Also, there were some kind of growths in the lining, which he said were 'probably just uterine polyps, again no big deal, Tamoxifen causes this...   Anyway, in August, I had a D & C...  it was PAINFUL!  BUT, a few days later, when I called my gyn onc's office for a followup appt., I was told that it was all benign.

So just want to let you know that it may be ok...  it was alright for me.  Of course, I am still not too happy when I think these things may be growing back, but if you get u/s regularly, your dr. can keep an eye on things.

HUGS,

Harley

sunflower59

Hello!  I just started on Tamoxifen yesterday and after reading all of these posts, I'm now sitting here thinking "Good grief.... this is what I have to look forward to????"  Wahhhhh!!!  The last time I had a transvaginal ultrasound was in Oct 07 and it showed several fibroids and a cyst on my left ovary.  I've had the fibroids for years but I not the cyst.  Fortunately I have an appt with my GYN in July.  She's been out for several months now (back surgery) and has no idea that I was diagnosed with LCIS this year. Guess I'll be getting more transvaginal ultrasounds now.  I am almost 50 years old and still having periods (sigh).  Will my periods stop all together while I'm on tamoxifen??  That would be super duper if it does! 

Laurie

Anonymous

My oncologist said that while on tamoxifen 25% will continue with normal periods, 50% with irregular periods, and 25% will stop altogether.  Mine became very light and very irregular. A yearly transvaginal US is a good idea to monitor both the uterine lining and the ovaries. (probably even more important for you since you already have the fibroids and the cyst).

Anne

sunflower59

Thanks Anne... that's good to know! 

I am pretty sure I will be having more transvaginal ultrasounds in my future.  Oh joy!  It's amazing that I even have time to go to work with all the doctor appointments and the 2 biopsies (stereotactic and surgical) that I've had this year!  I also see a Neurosurgeon because I have a herniated disk in my neck and may be having neck surgery down the road.  I need a vacation!!!!

Laurie

Dips

Thanks Lolilta for your advise and input, I had my biopsy done yesterday, I am anxious for my results now.  I've been doing a lot of research and spoke to my Pharmacist too. She said it's very rare that someone on Tomaxafen will develop Uterine cancer... but hey there's always that possibility. I guess I just have to wait and see.  Hopefully by next week i'll have something.

Do you remember how thick ur lining was?

I was reading up on this today and it said people who have had abortions in their lifetime, are at a higher risk of developing BC.  Does anyone has any input on this?

Thanks Dips!!!!

ashaby

Hi All,

I'm 58 and stopped my period almost immediately when I started Tamox 2 years ago. Now I'm spotting and am scheduled to see my obgyn. I AM SCARED BUT WONDER IF ANY "OLDIES" HAD the same issue.

Thanks, Basha 

Harley44

Basha,

I am 46, but I have been menopausal since I was 35 y.o., when I was dx'd with Premature Ovarian Failure.  I haven't had periods for years.  BUT, last year, after being on Tamoxifen for 4 months, I started having bleeding issues...  I had a trans vaginal u/s and saw a gyn onc, who wasn't worried at all.  He said that it was probably just 'uterine polyps', because Tamoxifen can cause these. 

In August 2008, I had a D & C, and the gyn onc scraped the lining and took out the uterine polyp(s)...    The pathology came back benign. 

I am thinking that you may have similar findings.  Hoping for b-9 results, whatever tests you may need to have.

HUGS
Harley

ashaby

Thanks so much, Harley. I'll send results to our other online playground!

xxxxxBasha 

Harley44

Basha,

Thanks!  I'll be on the lookout for your b-9 results!!!

hugs,

Harley

Maeve

Hey Ladies,  Just been for the scan today on my uterus after the dr telling me it was unusually thick, after a lot of poking about the gyny told me that it was fine and within normal range, YEAH!   Although he did spot a cyst on my left ovary, he said it was nothing to worry about, but I'm not sure, has anyone any experience of a cyst on the ovary? 

Basha how did you get on with the obgny? 

Dips - I've heard that theory on abortions and BC, I live in northern ireland where abortions are illegal and the anti-abortion movement have made a point in stressing the link between BC and abortions as part of their cause.  Recently a doctor has dismissed these claims and condemed the movement for making such a claim. 

If anyones got any experience with a cyst on the ovary I would be most thankful.