Tamoxifin, Endometrial biopsy & Uterine Cancer

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TheLadyGrey
TheLadyGrey Member Posts: 231

I had my annual trans-vaginal ultrasound today and my gyn wants to do an endometrial biopsy. I'm on tamoxifin (4 years) and my endometrium is .47 with a cutoff of .39 and my fibroid tumors have increased in size by on average 33% over the last 18 months (or so). I'm 55 and presumably post-menopausal.

I had an endometrial ablation about 15 years ago so I have very little endometrial tissue available to biopsy which I discovered when I had the procedure 7 years ago.

The biopsy was the worst pain I have ever experienced. No question. Nothing else comes close. I passed out, vomited, then passed out again.

So when she said she wanted to do the biopsy, I said absolutely not. Just take it all out.

Well, no, you still have to do the biopsy. I have no idea why.

She offered to get an anesthesiologist in to give me sedation which sounds appealing but like something insurance won't cover as the standard of care (US) is ibuprofen and xanax.

Gyn is worried about "a second cancer" and I'm worried about pain -- I can't go through that again -- and $$$$.

I know that tamoxifin statistically increases the risk of uterine cancer but has anyone here actually HAD that outcome? I need to hear that this is a real rather than theoretical risk.

At the moment, I am deeply inclined to wait a year and see what develops rather than either go through the pain or shell out the $$$ for a test that feels like it is based on protocol rather than a real risk.

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Comments

  • Jelson
    Jelson Member Posts: 1,535
    edited March 2016

    I had repeated thickening of the lining - but my gyno was looking at 9mm-11mm, I don't know what your figures refer to. I was ALWAYS given the choice of an endometrial biopsy in the office OR a D&C as oupatient and I always chose the D&C. (twilight anesthetic) even though I kept getting D&Cs (2) as a result of thickening - it wasn't until I had symptoms - at first a light brown stain and then a light pink stain - that a TVU revealed more thickening and a polyp and the subsequent D&C revealed a lesion. In retrospect, from first symptom to hysterectomy - about 10 months. So yes it does happen - the vast majority of endometrial cancer is in post-menopausal women and the vast majority of tamoxifen caused endometrial cancer also in post-menopausal women. Mine was caught very early - only surgery, no radiation or chemo.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited March 2016

    wow, so sorry you have to go through this. I can't give you any advice based on experience, but sending you good thoughts. I had a uterine BX 10 yrs ago and don't remember it being too bad. It wasn't pleasant by any means, but certainly not as bad as what yours sounds like. I ended up having a HX and oophorectomy due to fibroids and ovarian cysts. I am glad it was done. Maybe you could get another opinion or talk to your MO. I would think they would have to biopsy the tissue if you had a HX anyway...?. Maybe there are other reasons. Best wishes.

  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2016

    Yes my sister in law got endometrial cancer from tamoxifen we are presuming it was that treatment for her breast cancer. They immediately discontinued the drug and now is doing chemo before they operate.

  • Lou10
    Lou10 Member Posts: 332
    edited March 2016

    I totally relate to the pain you felt. I thought I was tough about pain, but those biopsies were something else for me too. I've had three without sedation. The first time I had no idea it would be so bad. The other times I would have chosen to have a hysteroscopy with sedation instead (the cost is covered where I am), but I couldn't have sedation since I had to be able to drive home to take care of a loved one. Next time I'll find a way! If the cost of sedation is prohibitive, could you take sedating medication?

  • oranje_mama
    oranje_mama Member Posts: 260
    edited March 2016

    I have no answers . . . actually facing some of the same questions as OP. After no periods for 2+ years, I started spotting/bleeding about 12 days ago. I'm still spotting. Ultrasound found some thickening of uterine lining, not apparently significant, but also 2 ovarian cysts. One close to 5cm on my left ovary.

    My doc wants to do D&C and hysteroscopy. She also started talking about a hysterectomy/removal of ovaries. I feel like that's jumping the gun! Are there really such great risks to a wait and see approach?

    (And Hi to Keep the Faith from my Chemo sisters board!)

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2016

    I did the ooph and the D&c at the same time for many of the same reasons. Moved on to an AI though I didn't mind Tamoxifen except for uterine issues.

  • labelle
    labelle Member Posts: 721
    edited March 2016

    I've been taking tamoxifen for something like 6 weeks. Just got back from a transvaginal ultrasound (baseline kind of thing) and gyno appointment. She says my lining is right on the "cusp" of needing a biopsy. Report back in 3 months for another transvaginal ultrasound and possible biopsy. I had a biopsy done years ago due to heavy bleeding and it hurt like crazy for sure. She says they've come up with a better technique and it's now less painful. I really don't want to find out, but am afraid that's where this is going. Because I'm perimenopausal (I've had my period about 7 times total in the last 2 years) all bleeding is suspect at this point, so if I have any I'm supposed to report it ASAP.

    Since I started Tamoxifen I've had the worst yeast infection ever, sex has become painful, especially afterwards, it takes me days to recover, I'm moody and out of sorts, my hair is thinning and today I bought a pack of cigarettes (the first in well over a year). I'm planning to open a bottle of wine soon because it is 5:00 somewhere. I really don't know if it's worth it. I won't see my OC again until August, but I'm so not happy with Tamoxifen. I put off taking it for a year and felt really good before I started it--now, not so much. Oh, and my endo wants to see me every 3 months now too because Tamoxifen can screw up thyroid meds and they may need to be adjusted. I've been stable with that medication for a couple of years but remember how horrible I felt when my thyroid messed up (Hashimoto's). Not good at all!

    Yes, I need a drink!

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2016

    Hi labelle - yep they all suck - Tamoxifen seems like a picnic to me compared to the AI. I've had several biopsies in the past few years. Ugh. Hurt. Like. Hell. Over quick though.


  • labelle
    labelle Member Posts: 721
    edited March 2016

    lol. I was going to ask you if the AI was treating you more kindly. Guess not! Crap.

  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2016

    I can't bring myself to start AIs again.

  • LifeOfBabbs
    LifeOfBabbs Member Posts: 28
    edited March 2016

    my doctor has taken me off of hormone replacement therapy, and now I'm having terrible hot flashes again. My doc put me on Vitamin D and Paxil for hot flashes. I went through menopause at about 41 and started the HRT at 42. My gyno did a routine ultra sound bc of the breast cancer diagnosis and my endometrial lining was thick. I had a biopsy of that yesterday and it was extremely unpleasant. As far as I'm concerned they can take it all out. I'm not doing another biopsy like that one. I'm glad I didn't read this thread before the biopsy bc I probably wouldn't have done it! My doctor says that if I don't start having sex often, then I'm going to have real problems with the lining of my vagina getting really thin (from no Estrogen) and I might not be able to have sex. Can anyone relate to this? I don't want this to happen. I'm only 49.

  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited March 2016

    I've decided to take the report to my MO and see what he says.

    Complicating matters is that I have moved to a different state from my gyn -- was back visiting family and she's been my gyn for 27 years and I really don't want to start over with a new gyn (male only options where I live) but it looks like that's the only sensible decision.

    Like you LifeofBabbs, I'm fine with taking it all out. My lady parts have caused me enough trouble. The prospect of annual endometrial biopsies just doesn't do a lot for me.

    I tolerate the tamoxifin well and am not excited about switching to an AI so if I do go the surgery route I guess I'll have to decide whether to go that route.

    I've never heard of the frequency of intercourse/vaginal lining issue. Sounds suspect to me.

    Sigh. I guess I should be grateful for access to medical care and testing, but I'm finding BC a whole lot harder to put behind me than I had expected. I'm supposed to be (and am) grateful to have survived but it isn't like having your appendix out where it is one surgery and done.

  • LifeOfBabbs
    LifeOfBabbs Member Posts: 28
    edited March 2016

    TheLadyGray, I have a friend who became unable to have sex after menopause due to the lining getting so thin. The problem is, that at this time, we usually only have sex on weekend bc I'm so tired, or my husband is doing something else. Not sure if that's enough? My friend tried all sorts of medications that her gyno gave her with no success.

  • cascader
    cascader Member Posts: 599
    edited April 2016

    Yesterday I had a biopsy of my uterus. My endometrial stripe has increased in thickness from 7mm to 9mm last year, and now 11mm. I have been on Tamoxifen for 6 1/2 years.i also had an appointment with my oncologist yesterday and she told me to stop takingTamoxifen, because of the thickening the risks now outweigh the benefits. I thought for sure she would switch me to an aromitose inhibitor but no. I am done. Have mixed feelings about this but it is good and I look forward to hopefully losing a few pounds and feeling more like myself again. Biopsy results Monday.

  • Debutante8
    Debutante8 Member Posts: 45
    edited April 2016

    I have been on Tamoxifen almost a year. They just found a large tumor the size of a grapefruit in my pelvis. They don't have a clue what it is---having surgery April 20th. I had a hysterectomy years ago and only have 1 ovary left, which appears unremarkable on the CT and ultrasound.

    I have heard that Tamoxifen can make things grow, but haven't found much to support it during my research.

    Sorry you have to go through this!

    Deb

  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited April 2016

    Finding this thread today was fate. I had an endometrial biopsy yesterday, because I had some vaginal spotting a few weeks ago. I haven't had a period since I had chemo six years ago that threw me into menopause. Needless to say, it was worrisome to have bleeding again after so long. The gyno removed a polyp from my cervix and I have a follow up appointment in three weeks to get the biopsy results. I was on Tamoxifen for two and a half years, and Arimidex for another two and a half years, I finished in November 2015. I am trying to stay positive, but I am having a difficult time not thinking about the possibility of going through the whole cancer experience again. As far as I'm concerned, if the doctor recommends a hysterectomy/oopherectomy, I will reply with a resounding YES! I'm 57 years old, I don't need these "lady parts" anymore.

  • cascader
    cascader Member Posts: 599
    edited April 2016

    Dutchgirl6, completely understand. 7 years later and still dealing. Had a brief pity party today.I too am from Okanogan ... County in Washington.

  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited April 2016

    I went and saw a new gyno in the city where I live, leaving my gyno of 27 years.

    She wants to do an endometrial biopsy with the assistance of a camera and an anesthesiologist. Her concern is the size of the endometrium I'm not supposed to even have after my ablation 15 years ago and the episodic bleeding. In the event that no cancer is detected, she will then give me a vaginal hysterectomy, leaving my ovaries.

    The $$$ issue remains. I haven't heard a number yet.

    The reason they have to do the biopsy first is that if there is cancer, I have to have "a different kind of surgery." I have no idea what that means, but I'm assuming it is a harder recovery than a laproscopic vaginal hysterectomy.

    Complicating matters is that we are changing insurers in July so I'm inclined to wait until the new insurance is in place so that I'm not faced with meeting two deductibles.

    I still think it is sort of stupid to pursue this but I felt the same thing about the breast biopsy, the mastectomy, the chemo, the Herceptin and the Tamoxifin so it may be my judgment on these matters is flawed.

    I'm not going to do this every year so I WILL have my lady parts out. I just have to figure out the timing I suppose.

  • bcisnofun
    bcisnofun Member Posts: 488
    edited April 2016

    Hi ladies - I found this thread last night knowing I had an endometrial biopsy today just to get a feel for the experience of my bc sisters. I'm so sorry some of you ladies have had such horrific pain. When they make it so painful it's easy to put it off for sure (I thought about "forgetting" my appointment this morning!). I am generally a sissy about pain and was all set to beg for an epidural (ha ha) or a hysterectomy so I don't have do bear this procedure annually. But I was pleasantly surprised. My doc had prescribed a med (misoprostol) that I took last night to help me dilate, I took 800mg of ibuprofen about an hour before and a Xanax to calm my nerves maybe 20 minutes before since I was a freaked out. It wasn't fun, but it was super quick (maybe a few minutes?), a painful pinch or two, and then a tiny bit of cramping (nothing as bad as a period cramp) and that's it. I really think it's primarily the skill of the doc. There is just no reason that docs aren't more helpful in making the procedure more bearable. So if you've had a terrible experience, maybe try a new doc before avoiding it. Thinking of all of you and wishing you health!!!

  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited April 2016

    So my biopsy results came back negative, yippee! I did have a feeling that would be the result, but having been down this path before, there was a seed of doubt planted in my mind. But, it's good news. I have to go back in November for another ultrasound, because of a thick uterine lining, but that is just to keep an eye on things. I'm ok with that. Stay strong!


  • maureenb
    maureenb Member Posts: 81
    edited May 2016

    Great News dutchgirl6! I hope I am so lucky. Have a biopsy next Thursday. Definitely worried.


  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited May 2016

    Thanks, maureenb. I hope that you get the same result. Good luck on Thursday.

  • Pam7712
    Pam7712 Member Posts: 27
    edited May 2016

    Hi all,

    I just wanted to mention my own experience with an endometrial biopsy -- since I just had one yesterday. Like others, I was completely freaked out and worried that the experience would be extremely painful. I talked to my ob/gyn about my fears, and she said there were definitely things we could do to make the biopsy easier on me.

    I ended up taking two 200 mcg tablets of Misoprostol three hours before the procedure -- which helped my cervix dilate a bit. Then, I took two 325 mg tablets of hydrododone (pain med) and one 5 mg tablet of Valium (anti-anxiety med) one hour before the procedure. These meds helped me tremendously. I was relaxed and the biopsy didn't hurt much at all -- just a couple of pinches. I think bcisnofun had a similar experience. So, I would HIGHLY recommend medical intervention/assistance when it comes to an endometrial biospy. Why suffer unnecessarily?

    If the biopsy is negative, the next step will be a D&C. If it's positive, that will mean a hysterectomy. I know the odds of Taxomifen causing uterine cancer are low (isn't it 1 in 500?), but I'm still very anxious. Really don't want to go through cancer treatment again.

    I did have one question for the group. My official diagnosis (after the transvaginal ultrasound) was "cystic endometrial hyperplasia". Has anyone been told they have that specifically? And if so, do you know how common it is for those on Tamoxifen? My ob/gyn is telling me it's not that common, but I'm finding that hard to believe.

    Pam


  • rozem
    rozem Member Posts: 1,375
    edited May 2016

    Hi All

    glad I found this thread...looks like I need to have an endometrial biopsy. No one told me why (secretary called to schedule) but obviously they saw thickening.

    Im terrified...we all know how my last biopsy went down

    I know they are really taking this seriously because I did have some spotting, so little in fact I wasn't even going to mention it. I don't even want to start googling. And of course now im obsessing that all my tamox discharge may be suspect

    im going to have to refill my Ativan


  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    Rozem - I had a couple biopsies while on Tamoxifen. They are no fun. I spoke to a gynonc about my issues. I discovered that uterine cancer is very rare and often easily curable with a hysterectomy. Thus I didn't really worry too much about it. I was peri menopausal at the time and had continuous bleeding from a polyp and a couple of episodes of incredibly heavy bleeding. I blamed in on T ( and still do) but coincidentally I spoke to my onc's nurse and she had the same thing premenopausally and has never had BC or been on Tamoxifen.

    In the end I had a D&C and an ooph then moved to an AI. After struggling for about a year on the AI I'm back to Tamoxifen. Crazy to think that I'm relieved to be back on it.

    Best of luck. Finger and toes crossed that everything is just fine.

  • rozem
    rozem Member Posts: 1,375
    edited May 2016

    thanks so much Farmerlucy!!! your post really helped lift me out of the dumps...its been a bad day. I had all those emotions running through me again just like the first time I was told "you need a biopsy"

    I hope its nothing but if I am having all these issues I am wondering if they will recommend a hyst - the thought of more major surgery is really weighing on me - but at long as its not cancer I will deal

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    The same gynonc told me if the uterus is proven benign with a D&C there is no reason to remove it. So I didn't. My gyn gave me a list of option from doing nothing to a full ooph/hyst - I opted to just do the ooph/D&C - it was very easy surgery and beside being a bit tired the next day I was back at it.

    If I was a betting person, I'd bet that Tamoxifen is up to its old tricks with you, and you'll be just fine. Hug to you my friend.

  • Ridley
    Ridley Member Posts: 634
    edited May 2016

    Rozem - I ended up with an endometrial biopsy due to some bleeding and thickening while on tamoxifen. Everything came back fine, and I hope it does for you too. I just saw my gyno last week and the last ultrasound did not show any thickening.

    I do want to mention that I found the procedure painful. My gyno said that the experience varies widely. I'm usually really lucky with pain, so I was surprised, and if I had to do it again, I would figure out what I could take beforehand. I don't want to add to your anxiety, but I'm over unnecessary pain if it can be avoided.

    Good luck.

  • rozem
    rozem Member Posts: 1,375
    edited May 2016

    well I had the biopsy this AM - they had a cancellation. Of course I then freaked because im thinking they must have squeezed me in....

    no warning of taking anything and that hurt like hell. I am actually quite disappointed in my Gyn's office for not warning me about the pain

    in any case she did the dreaded biopsy and she said that normally with uterine cancer she sees a lot of sheets of tissue and mine didn't look that way. My lining is 10mm and I have cysts. Oh and my ovaries are still working because I have follicles - chemo/zoladex/tam/age and I cant slow these puppies down...back to the shots I go

    thanks for all your support ladies

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2016

    Uh yeah - hurts like crazy. Zoladex and AI now? Glad thecursory glance looks good! Let us know, ok?

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