Uterine cancer - what were your symptoms?
Hi, Has anyone been diagnosed with uterine cancer while premenopausal on tamoxifen? What were your symptoms? I'm been having a period and spotting for almost two weeks. Just wondering if the symptoms are more dramatic than that, such as heavy bleeding not just spotting. I don't want to get a uterine biopsy if it's not necessary. Thank you x
Comments
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Hi Ocean, Youi're on tamoxifen & spotting for 2 weeks, so you basically have to get it checked out. Uterine biopsy is not a picnic, I realize, went through it and ended up with a D&C. I had a number of benign polyps that were causing the bleed. In your shoes I'd put a call into my obgyn and get it checked out. Tamoxifen makes the risk higher, no need taking a chance. I'm sorry this is happening, been there, done that and it wasn't fun. Keep us posted please!
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I had 3 polyps, no bleeding--b-9. Risk of endometrial cancer increases with tamoxifen, but how long you've been on it makes a difference too. Tamoxifen can cause spotting in and of itself. Fibroids, polyps, hormonal changes can all cause spotting. Even atrophy can cause bleeding that appears to come from the uterus, but is vaginal.
Good luck.
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Oceangirl, my docs said that when a woman has periods, they do not worry that there would be an increased risk of endometrial cancer on tamoxifen since the lining is shed regularly. In other words, that slighty increased risk is for postmenopausal women. In any case, an ultrasound and not a biopsy would be the first step. And as mentioned above, tamoxifen can cause all sorts of weird stuff with your periods. By all means talk to a knowledgeable gynecologist and oncologist about any concerns. But I hope what I have said will make you less worried.
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Ocean: I was diagnosed with endometrial cancer after being on tamoxifen for 9 years. I had slightly heavier periods than usual and some spotting between. I also had a mucousy discharge. At my next regular annual exam, my gyn said the endometrial lining was very thick—he called it the tamoxifen stripe— and he decided to do a biopsy. It came back as early stage endometrial cancer.
To ease your mind. I’d schedule a gyn visit and discuss your concerns, but lots of peri menopausal women have spotting, so don’t jump to conclusions. Tamoxifen only increases your risk by 1%. I just happened to be in that 1%.
Best to you.
M
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Thanks for your nice message, ShetlandPony!
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Hi Mom-mom, thanks for your post. Did you have the discharge every day? I guess it was wrong when my gyn said that to have endometrial cancer you must be bleeding heavily every day because it sounds like you weren't. I don't know how they are supposed to tell if you have endometrial cancer then, unless they do biopsies all the time because I have all kinds of symptoms on tamoxifen, like very heavy periods, periods at all weird times like not for three months and then close together, and spotting. Did you have an ultrasound because of symptoms or was it like an annual checkup, because my oncologist said not to have ultrasounds since I'm premenopausal and there's no increased risk. How did they treat your endometrial cancer? Take care and I'm so sorry you had another thing to deal with after breast cancer xx
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Ocean: The discharge was pretty much daily. And goopy (sorry).My periods had been wonky, and I was in peri menopause so skipping some months, but it was when doing the regular exam that my gyn said my lining looked very thick and he wanted to do the biopsy. my gyn called in his colleague to take a look, too. They conferred and suggested a biopsy “just to make sure”, and then the sample had to go thru 2 pathology readings to confirm the cancer so the endo cancer diagnosis was a bit of a surprise. They referred me to a gynecology oncologist, who reread the labs and scheduled a hysterectomy and oophorectomy, which helped solve my ER+ Situation.
Still, endo cancer is not common, 1% risk. tamoxifen increases it to 2%. I should play the lottery. It was a tough summer last year and I was glad to see 2017 end.
Can you wait until your next regular gyn exam? Or are you fretting too much?
M
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Hi mom-mom, Thanks so much for telling me more details. It sounds like you had a good doctor. I'm sorry you went through that
Maybe I can wait till the next checkup since I don't have a discharge and I just have a tiny amount of spotting. I'll probably wait a little while and decide what to do. Take care x
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Hi Mom-mom, I was wondering- when you went for your checkup had you just had your period (so that the lining was at its thinnest in the cycle) or was it before your period, and how thick was the lining? I went for a checkup in February but it was a new gynecologist (very young). I hadn't had my period for a while and my lining was 14mm. She was very concerned and wanted to do a biopsy but I asked my oncologist and he said that this is normal for before your period and on tamoxifen and that I don't have to worry until the next checkup. Thanks for telling me. I'm sorry to remind you of it all x
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Hello Ocean! I guess I’m in the same boat. I have been on Tamoxifen since March 28, 2018, and am peri menopausal. I instantly didn’t have periods for 3 months and now I have vaginal discharge and phantom breast pain (the breast pain went away about a month after radiation. I did immediately call my mo and was told to stop the tamoxifen and go to my gyn. I am a worrier and now after reading some blogs I’m really nervous to go see my gyn this Thursday. I guess my question is Ocean ,how are you doing now?
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Hi mawaller67,
Well one thing I would never do is stop the tamoxifen because the cancer cells can try to get immune to it if they get a break from it. So I'd take it. I think some oncologists tell you to stop it so you don't sue them if you end up with some side effect of it, but when my mom took it the doctors never would tell you to get off it. She took it for five years and she has been completely cancer free for 24 years. So I'd take it for sure! Well, what happened to me was really creepy- I got a cervical polyp that I could feel coming out me. It was the worst because I didn't know what that was and I had no idea what was coming out me. This was on May 20. So I waited all night, freaked out, and then tried all day to get an appointment with a gynecologist even though I'm new in town. And I got one and she took the polyp out which didn't hurt at all. After that the discharge stopped completely. I think it was just my body trying to get the foreign thing out of it (sorry TMI). So then I had an ultrasound done to check for more polyps (which are common on tamoxifen) but the ultrasound was done by a technician, not the doctor, and the doctor couldn't tell anything from it (this makes me mad). One thing they did tell was that the lining was 8mm which I thought was ok, but they want to do a biopsy. I asked to wait, but then I had spotting and discharge, which maybe was a super light period since it was 28 days after my last one. But since I've never had a period like that before, they wanted to do a biopsy or D&C. They said I'll probably need a D&C anyway, because even if the biopsy is fine, if I spot again, they will want to do a D&C. So I have an appointment to discuss getting a D&C but I don't want to at all! I haven't had any problem since then. No spotting or discharge so that makes me want to do nothing. But I'm too scared of chemo to do nothing. So I don't know....Apparently a D&C is not a big deal really, but still, I'd rather not take the chance of surgery if I don't have to. Sorry I don't have any good news. I've been on tamoxifen for three years so I'm having more of these weird things like a polyp. But you've only been on it for a little while so it's weird. When I took Chasteberry/Vitex the discharge/period stopped, but I'm not sure if you're really allowed to take it on tamoxifen (I did anyway because I just wanted the discharge to stop by having more progesterone to counteract the estrogen). If you take Chasteberry for a few days and it stops then it seems like it was just a hormonal thing. But I don't know- I guess doctors' advice are the safest bet. What kind of discharge is it? Take care xx
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Hi Guys, joining this thread. I just had a Uterine lining biopsy yesterday and am eagerly awaiting results from that. Apparently I have a mass via Ultra sound.. that looks like a fibroid. I'm not spotting or having issues, so it came as a surpise. I was was 1 week out from the start of my period (which typically lasts 3 days) so technically I had the Ultra sound 4 days after my period ended and they said my lining was 12mm. I didn't know if that's good or bad but they wanted a biopsy, so 12mm must be bad?
In any case, if it's precancerous or cancer, Hysterectomy will be immediate. (I'm 43, have regular periods and been on Tamoxifen for 2 years). If it's nothing, I'll probably still have the Hysterectomy and Ooph this fall. I just can't take the idea of an more biopsies.
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Dear Lisey, Thank you so much for sharing your experience. It sounds like the biopsy was horribly painful or unpleasant. I don't want you to get a hysterectomy and ooph if the results are all clear! It is a very intense thing for your body- I met women in the cancer support group who had a bad time with the sudden loss of hormones from ooph. If you ever need a biopsy again, you can get a D&C instead. The doctors are willing to do that in order to avoid biopsy, and you aren't awake for it so it doesn't hurt. All the people I've read on this forum who had D&C said it wasn't a big deal. Can you tell me about your biopsy? I am trying to decide between biopsy and D&C and now I'm thinking I should choose D&C based on how you felt after your biopsy. I'm so sorry you went through a bad experience again. It sux so much what we have to go through. I had a biopsy about ten years ago and it hurt a lot, though I hadn't taken any painkiller beforehand because it was decided on the spot in the doctor's office (not a good idea on their part, since painkiller was definitely needed). I think 12mm is thick for after your period, because mine was 8mm the same amount of days after my period and they said that is more thick than they would expect right after my period
Please let us know the results, and spoil yourself a bit with some nice experiences after this bad experience xx
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Hi Ocean, actually the biopsy wasnt' that bad at all. It honestly felt like a pap smear. I was loaded up with 800 mg of Ibuprophen and my girlfriend had me take an Ativan an hour before. I was laughing the whole time and it was just pressure no pain. I had mild cramping afterward and slight bleeding for about 24 hours. It wasn't nearly as bad as I thought - the Ativan and Ibuprophen probably did the trick.
I'm still waiting on results... I'll return and report when I find out what I'm doing.
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Ocean,
Thanks so much for replying to my post-I was worried it was too late after your original post. I am new to blogging-actually your post was my first! I was hesitant to join, but glad I did as I was able to recognize terms and procedures when I went to my gyn yesterday. They did a pap test and transvaginal ultrasound, which revealed 3 cycts on my ovaries and a fibroid. She said she would do a biopsy, but my lining is 12 thick so recommended we do the D&C to "clean things up." My tech said she didn't see any polyps, but the gyn wants to make sure. Waiting for their call today to schedule. In the mean time, reading more blogs and getting more nervous it might be cancer. PTSD I guess you could say. To answer your question, the discharge started off brownish and very light (panty liner). That lasted about a week. Then the cramping began and heavy bleeding started-thats where I am nowl. Sorry for the tmi...Thanks again!! xo
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Ok, results back are no cancer... Whew.. that's a relief. But I'm still getting the hysterectomy in Fall. Sooner than I would have liked, but with this 'fibroid' and the fact they can't be certain it doesn't contain cancer unless I have surgery.. I should just bite the bullet and get it done. It helps my BC odds too, I just hope I'm not too much of an old lady afterwards.
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Happy for you, Lisey!
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That's good news, Lisey!
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good news
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Congratulations on the results!!!
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Good news!
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thanks everyone.. This cancer stuff is a journey for sure.. nothing just is over, it's all a process.
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Well I went to my gyn and had a pap test and ultrasound. The pap test came back abnormal and they found 3 cysts and a fibroid. Gyn did D&C and it turned out better than expected. Only one very small polyp and biopsy of inflamed area. Now just waiting for path results, which I get back the 9th. Soo worried. Been considering hysterectomy...soo confused.
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Hi Mawaller, I hope it's all good results now and this episode is over with. If you read online, there are big problems with hysterectomies, especially for your sex life, because your cervix is gone and that's where your orgasm comes from, and also your vagina can get shortened or injured. I wouldn't get it unless you have cancer of the uterus, and even then, sometimes they can spare your cervix. Hopefully it's just all good results, and you can just put this behind you. It feels so bad to be biopsied and poked and prodded and really makes your quality of life go down while you're dreading the doctor appointments, but maybe it's over now and you can just try to forget it happened. Take care xxx
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I'm scheduled for a full Hysterectomy / Ooph in Nov. Ocean, the complications you state are so rare. Sex is affected due to loss of estrogen in the majority of cases, not a shortened vagina. In addition, I don't know about anyone else, but my Orgasm, comes from a cute little button that has NOTHING to do with my vagina thanks. Hubby understands the way to makes things work and it's not from my cervix. Be careful trying to create a boogeyman where it doesn't exist. Women in their 40s get hysterectomies every day - 2 of my cousins have had it done and they said sex in their 50s is the best it's ever been... especially no cramping or periods to mess everything up.
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As always - there are pros and cons to every choice. If you have no choice (uterine cancer) then hysterectomy is the way to go. However - there are repercussions. While orgasms generally don't start with your cervix, they are influenced by contractions of the uterus. And having a uterus in place is helpful for things like bladder support and prevention of vaginal prolapse.
It absolutely always involves the specifics of each person. I'm in favor of keeping as many body parts intact at this point as possible.
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Great news-no uterine cancer!!! All healthy. However, did culp in the office (surprise!) and took 3 biopsies from cervix. That was not pleasant...I see my mo Tuesday to discuss Tamox issue ( which I want to continue taking) and on Wednesday my gyn to make a plan based on my options. Serious soul searching time to choose the right one for me.
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mawaller - Congrats on the good news!!!
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Well, final test results in and no cancer!!! What a relief...did some soul searching, spoke in depth with mo and gyn and going to have hyst and ooph October 25. Started back taking Tamox. and feel a big relief to have a plan!
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Mawaller - wonderful news on the no cancer! YAY! Glad you have a plan set in motion. xxx
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