tamoxifin and endometrial cancer

Just wanted to add another data point based on my biopsy. I started tamox in July, began having pelvic bloating two months later (the week after my period). At four months, the US showed ovaries OK but that the endometrial lining was 11mm. The GYN said it could be the result of tamox and the fact that I'm still pre-meno (and the lining changes during your cycle). Uterine biopsy came back benign. Hurrah. The GYN said that it's unusual to have endometrial cancer without any other symptoms (such as bleeding between periods or change in bleeding patterns).  So I think these docs like to investigate any symptom. It's a little stressful but better safe than sorry, right? (and I think changes in bleeding, bloating, discharge, etc are ones they want to investigate, even if they turn out to be nothing). FYI in case this helps anyone deciding whether to discuss the symptoms with their doc.

I am relieved to report that my pathology report says .... (drumroll)....benign!

Tamoxifen has NOT given me endometrial cancer, at least not yet! 

Sweaty Congrats!!!! Wonderful news.

I'm going in this week to speak with a genetic counselor (on the recon from my onc). I plan to find out if the test they will give me will tell me whether my endo. cancer was related to the tamox or whether it's more likely just genetic. My appt. is on Thursday.

Best wishes for an informative consult, BetsyBuzz!

And sjack, I hope it was a lot of fuss over nothing!

I had my post op follow-up w/ gyn, now I'm awfully confused.  I thought I was having semiannual pelvic ultrasounds to check on uterine cancer risk from the Tamoxifen, but gyn said no, it was to screen for ovarian cancer b/c since I've had bc my ovarian risk is now elevated; and if as a byproduct of screening my ovaries they find something going on in my uterus (like the polyps) they can't just ignore it. 

So they're apparently really scared of ovarian cancer and think endometrial cancer is no big deal.  I don't want to tangle with either of them, but I'd rather not remove any more body parts.

Having a consult with onc in the am, to discuss whether to go back on Tamox, switch to an AI, or blow it all off; and to go over my risk levels for ovarian & uterine.....JOY!

I was wondering if the reason Tamox is prescribed for premenopausal women was b/c the uterine lining will increase, but will be sloughed off monthly - making it less risky?  I'm just guessing...no real idea.  Now that I'm a year into menopause maybe I should go to an AI....?

Gyn said it was perfectly fine to go back on Tamox, and that "some people just make polyps."  If that's true, will I be having yearly D&Cs???

sweatyspice wrote

 I thought I was having semiannual pelvic ultrasounds to check on uterine cancer risk from the Tamoxifen, but gyn said no, it was to screen for ovarian cancer b/c since I've had bc my ovarian risk is now elevated; and if as a byproduct of screening my ovaries they find something going on in my uterus (like the polyps) they can't just ignore it.
So they're apparently really scared of ovarian cancer and think endometrial cancer is no big deal. 

Having gone this last fall, I've thought about this too. My sense is that ovarian cancer is often caught very very late when there's not much they can do. My GYNO said that endometrial cancer usually has symptoms, like irregular bleeding and discharge. I'm guessing (hoping) that those symptoms come early enough so they take appropriate action. Also, my GYNO said that the U/S can sometimes overstate how thick the lining is; when she did my uterine biospy she said there was very little tissue (and she's seen that many times).

Re: tamox for pre-meno women: We're pumping out too much estrogen for AIs to work. My understandings is that AIs, in general, tend to have fewer SEs including some of the serious SEs of tamox that increase with age. (like blood clots)

I am post- menopause and have been on tamoxifen for 2.5 years. At the outset, I sought a gyn who would follow me for tamoxifen SE and it has been a case of watch out what you ask for. He ordered a baseline transvaginal ultra sound - but by that time I was already 2 months into tamoxifen, my lining was like 8-9mm which is thick for someone Post M. So I had a D&C and all was clear - since then I have had the ultrasounds at 6 mo intervals, last year the thickness was creeping up and then went down again. This last time it was 10mm and I had another D&C - the path says benign polyp. I think if I had just pooted along as normal, without this extra surveillence, I would still be in the same place now - but in blissful ignorance.

re: ovaries. The first ultra sound, the tech couldn't find one and kept poking that wand this way and that - creepy. Subsequently, a different tech - no problem. Until this last time when neither ovary could be seen. I was the only one alarmed though. Perhaps if they shrink - it is a sign that they are atrophying (yuck) but also that probably no cancer tumor is growing on one. 

Sue - Hope you are doing well. It's not surprising you don't want to be sick again. Frankly I would wish this on anyone. But being smart and following up is the right thing to do, albeit, it can be scary. Did you go through chemo and or rads? If so, a hyster & ooph are a piece of cake.

Ladies- stay up with your monitoring...it may make a huge difference in your life.

I am still waiting on my genetics test so no news on that front. Post op...I've developed leg lymphedema...it sucks but thankfully I already have a fabulous LE therapist. Just had my first consult with her yesterday. More MLD and compression garments but hopefully this will just be temporary as I continue to heal from surgery.

Had a scare just before I left on vacation a couple of weeks ago. I had to go emergency for them to check for a blood clot as my left leg all of a sudden swelled up. TG no blood clot. I went off of tamox for one week, then back on. I refuse to take the AIs. As I was reading through their SE's I found out they have the same issue re: blood clots. Maybe the percentage is less but it's still an SE. I've already developed the worst SE -endometrial cancer. SI's also cause hypertension which I already have and I don't want it to get worse. I will go off all drugs completely before I will move to the AI's. That's just my opinion based on my own body. I know a lot of women that are on them and trying to make it work. I'm just not going there. 

Have been on Tamoxifen for one year and had my first vaginal ultrasound today. Had been scheduled in August but decided to change doctors and it took awhile to find the new doctor and get an appointment. The new GYN found "fluid" in my uterus on the ultrasound. The big pocket of fluid was easy to see and he was clear that this is not to be expected (or normal). I have a D&C scheduled for next week but I'm really worried. I have a "septate" uterus that is oddly shaped. Anyone have something similar? Did it turn out to be nothing serious? I want to get into bed and pull up the covers until this is all over.

Thanks for the quick reply. I'm so sorry to hear about your miscarriages. I saw a reproductive endocrinologist back when I was having miscarriages. I'm 59 now so that's been quite a while ago. I had two surgeries to remove the septum but it scarred back in both times.  I left one GYN practice last summer as they'd switched to having a technician with limited training do their ultrasounds. I picked this GYN as he does the ultrasounds and, I think, I have confidence in him. I haven't had any bleeding/spotting so the fluid came as quite a suprise. The GYN was good and spent time reassuring me this wouldn't be as difficult as one of the D&C's that I had years ago. What is a hydrosonogram? My GYN will be using the hysteroscope as well. Guess that I'll lead the way for us on this one. I'm confident this is not a parade that either of us want to be in at all.

Thanks for the  info! The GYN was matter-of-fact but very clear that the fluid wasn't normal so we are going right to the D&C. I'm feeling bad that I didn't get to a GYN for the ultrasound sooner but am really happy I left the other practice. Keeping my worries at bay will be my main job for the next week or so.

Heard from the nurse at my GYN's office that my endometrial lining was 2.6 cm (26 mm). I am worried, worried, worried. Checked my records from a few years ago and it was 1.7 mm. She was very clear that it was cm, not mm. I'm hoping that because of my funny-shaped uterus, maybe it's just a mix-up or hard to read. Any thoughts on what a measurement this high might mean?

Hi Golden, I don't know what it means, but I'm thinking of you. I have a hysterectomy scheduled for 12/18. My MO is insistent that it be done by the end of the year. I was in chemopause for 10 months then my period returned with a vengeance two months on Tamoxifin. I had an endometrial biopsy a few weeks ago, and that was benign, thankfully.

Golden- the "sooner than later" maybe for his scheduling reasons. 15+ years ago when the left half of my uterus was scarred shut, It didn't show up on ultrasound. Usually when they measure the thickness, they do so after scanning the whole uterus.  Since I'm in a similar predicament, I've done the internet search & there are women who talk of much thicker uterine linings & it wasn't cancer. 

Hoping you can find some peace of mind prior to your surgery next week. We all handle things differently. I'm assuming mine is benign until proven otherwise. I'm also veiwing all my cancer crap as a nuisance. I wish I had something to say that would ease your worried mind. Please post how your surgery goes. Also, just in case your told it takes 2 weeks to get pathology results, don't believe them. All my path reports have come back in 2 days. Let your surgeon know how waiting & not knowing is effecting you(hopefully he'll get the results to you as soon as they are available!) Take care & try to enjoy the holiday.

There was a mix-up on the getting the pathology report from my D&C on 11/29. Finally heard this week that everything is fine. What they had thought was build up of the endometrium was really scar tissue , the septum in my uterus may have contributed to the confusion as well, the fluid was probably accumulated because of a blockage from the scar tissue, and the pathology report was all clear. I do still need to get a copy to read myself but am tremendously relieved. Will have another vaginal ultrasound in six months.

Thanks for the good words and encouragement. I was able to keep the worries "at bay" even when it took longer than planned to get the results.

Surrounding  you with good wishes on Tuesday!