tamoxifin and endometrial cancer
Comments
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TonLee - your dx is similar to mine - my onco did not wait to start me on Tamox after rads. Was started immediately 3 weeks post chemo. Newer studies out there say Tamox + rads combo is the way to go. Your gyneco will know what to look for, it's the estrogen, progesterone, follicular, etc. hormone panel.
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Thanks Luan.
I am delaying Rads for a couple months until I can heal from my MX and get my fills.....Tamox and Herceptin are the only reason the Rad onc is even considering letting me wait (he may still fire me over it though, still in the process).
Thanks so much!!
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Hi Luan, I had the transvag's because my periods were so heavy I was going through a super-plus tampon plus a pad every hour. I just got back from the gyn - another painful biopsy (I had four c'sections, so this cervix doesn't like to dilate!). My lining currently is 2.3 cm. thick. TonLee, I have had bloodwork that indicates I am through menopause, but I know by instinct that it is not right. I have heard from many doctors that bloodwork for hormones cannot be relied on. Our hormones vary tremendously at any given time, depending on where we are in our cycles. I have been on Tamox since July, 2009. My doctor will have the pathology by Friday. So glad I found this thread. Thank you all.
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seaside----when I inquired about having a transvaginal US while I was on tamox (and having vagued intermittent discomfort), the gyn said "no---we only do that if you're having heavy abnormal bleeding". I ended up with large ovarian cysts which ruptured several months later, resulting in a TAH/BSO and immediate surgical menopause. Would they have been seen earlier had she let me have the TVUS? (quite possibly, but we'll never know; I might have been able to avoid the surgery completely) So I strongly recommend asking for a yearly TVUS while on tamox to monitor both the uterine lining and the ovaries.
Anne
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Hi everyone, I'm not sure where to post this question and will probably do so on a few threads... I am hoping to hear some advice on pros/cons of doing a hysterectomy, and/or stopping Tamoxifen.
My BC dx was in May 2007, just after my 40th bday. I had a bilat mast, A/C/Taxol chemo, and started Tamoxifen. Within a year my uterine lining showed significant thickening and I was advised to have a D&C, I also had large cysts on one ovary so it was removed. A year later my lining thickened again and I stopped Tamox for 6months to see if my lining would return to normal, and also to determine if I was truly post-menopausal or just in a Tamox-induced menopause. I must admit I LOVED how I felt during those 6 months and it was the only time since my diagnosis when I felt completely myself again! It turned out my lining continued to thicken, my estrogen levels skyrocketed to pre-menopausal levels, I dropped the 5lbs I hadn't been able to shift, and had what seemed to be 2 'light' periods for the first time since this whole ordeal began.
I then went back on Tamox and was scheduled in Dec '10 for what I thought was going to be a second D&C with my gyne onco but after I woke up from surgery he told me he only did a large biopsy since he was too concerned about puncturing my lining with a full D&C. The biopsy was clear. Now my lining is 1.9cm, I have several cysts including one that is 1.2cm, my estrogen levels plummeted again, the 5lbs are back, and I went for a second opinion. The second opinion is strongly recommending I have a hysterectomy and continue Tamoxifen. I am inclined towards just stopping Tamox but must admit it does scare me.
Other than the findings during my TVU's every 3 months, my only symptoms are a full feeling in my lower belly, frequent urination, and frequent UTI's, I also had some spotting a while back but none now. I have had 8 surgeries so far (including bilat mast, reconstruction, and the bonus of an elective tummy tuck), plus 2 c-sections before diagnosis. The thought of more surgery is obviously less than appealing, but of course avoiding more cancer and being around for my 3 children who are all under the age of 10 is paramount !
Any advice ???
Thank you !!!!!
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AWB, txs 4 sharing - that's exactly why i,m going to
insist for a TVU x 2 per year and will have 2 gyns if
need be !
Jackiebrown, a big shot gyn told me to not have my
uterus removed, if it aint broke, don't fix it. My cousin
had a hysterectomy, she,s BRCA2 + and she still has
to take TAM -
JackieBrown, it sounds like you and I are going through similar experiences. I have hated the darned Tamoxifen since the day I started it and with the current state of affairs, my disdain has increased. If you are in menopause, you shouldn't have a thickened endometrial stripe. You shouldn't have constant cramps and ovarian and lower back pain. You shouldn't be getting your period either!!! Right now, as I dread the phone call tomorrow about my path report, I am thinking: either 1) stop the tamoxifen and keep the uterus and let my body go through whatever it needs to without intervention or 2) have a hysterectomy and stay on the tamoxifen.
I have to believe there are others who have made intelligent decisions in this regard - should I post this elsewhere?
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My Onc told me even WITH ovary/uterine removal, I still should be on Tamox or an AI.
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Good morning - I also had uterine thickening and ovarian cysts while on tamox. My period became worse (also a super plus tampon and a pad per hour for about 3 days of a 7 day period). Due to those issues, I elected to have a TAH/BSO. That was 2 years after starting tamox. I stayed on tamox for another year then switched to arimidex.
Doing fine - all things considered.
Trish
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comingtoterms and JackieBrown,
I posted a ways back... I had a D&C done on April 6th due to endometrial thickening. The pathology came back benign. I have a follow-up appointment on May 5th to go over where we go from here and intend to ask those exact questions. I also have my 6 month appointment with my onc on May 20 to see what he thinks as far as what we should do.
I will let you know what they have to say about it!
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TThank you Seaside, I got a report today of "excessive proliferative changes" from my biopsy on Monday. I will be speaking with my doctor tomorrow to discuss where we go from here. I have been bleeding like crazy since the biopsy. It's almost like a dam let loose! I guess that with a 2.3 cm. endometrial stripe, there's a lot of blood in there.
Thank goodness we have a place to post these things - I think I would go crazy. My plan is to ask my Onc. for a 'tamoxifen holiday." Do you ladies mind sharing your ages now, when you were diagnosed, and where you are in terms of menopause? I was 48 at diagnosis. I am 50 now. I went through AC/T and started tamox. in July 2009. I don't even know if I was peri-menopausal at diagnosis because my periods were still coming every 28 days like clockwork.
Tammy
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Dear Tammy,
I was diagnosed just after my 40th birthday, and was on Tamox for over a year before I started having trouble with it. I am now 44yrs old. I was definitely pre-menopausal before starting chemo, now it seems my status is Tamox-induced menopause.
I took a Tamox holiday for 6 months, this was to see if I was still pre-menopausal or truly post-menopausal. I was also hoping my uterine lining would return to normal on its own. 3 months into my 'holiday' I had the first of two light periods and my estrogen levels climbed. Apparently it takes a few months for Tamox to leave your system so if you take a 'holiday' I think it has to be for at least 3 months ... I extended mine because it just felt SO GOOD !!
I have had 2 hysteroscopy's/D&C's and numerous in-office biopsies, the latest one was yesterday and I will know my results tomorrow...
So far my options seem to be any combination of the following:
- remove my remaining ovary to confirm a menopausal state, or 'turn it off' with zolodex injections, switch to an aromotase inhibitor
- have a hysterectomy and continue taking tamoxifen
- 'turn off' or remove my ovary, have a hysterectomy, take tamoxiven or aromotase inhibitor
It seems when you're neither obviously pre- or post- menopausal, and have these uterine changes due to tamoxifen side effects, you will hear varying opinions on what to do. I'm personally confused about my next steps and I find reading other people's stories and advice on this forum is really helpful.
Good luck and keep us posted !!
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comingtoterms,
I was 46 when diagnosed and had been having regular periods.. I did not have chemo and had regular periods up until I started Tamoxifen. Had a period on Sept 28, 2010 and began Tamoxifen on Oct 5. Have not had a period since. My onc said that, at my age, 50% of the women that start Tamoxifen will cease to have a period.
This thickening of the uterine lining was not something that was discussed with me! They talked about the very small (rare) risk of uterine cancer as well as the rare side-effect of cataracts (note to self, schedule an eye appointment) but what was never mentioned was this thickening stuff becoming an issue... It will be really interesting to see what the Dr's recommend from here on out! And what my GYN says vs what my ONC says...
jackiebrown,
Hope your results tomorrow are good! I too seem to have started down the path of numerous hysteroscopy's/D&C's and am not loving it! I will listen to what info my Dr's have to share but, as I told my husband, if this is the party that I am going to be invited to every year... unless given a compelling reason, let me RSVP now... um, no thanks! We will need to do something where this is not an annual worry!
Will let you both know what I know when I know it!
Wishing you both peace tonight!
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It will be 2 years in July that I have been on Tamoxifen. My pap test showed endometrial cells on my cervix. Since I am postmenopausal this should not be so Doc ordered US. US is showing a small fibroid and some fluid, He does not feel the the lining is thick, althought I did not get the exact measurement. My Uterine byopsy is on Tuesday. I had a cervical byopsy 21 years ago and it was the most uncomfortable procedure I've had. So not looking forward to it since this will be through cervic into uterus. I was told to take 600 mg of Motrin 1 hour before. Hope that helps. Will keep you posted.
Peace and Well Wishes to all!
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This sounds exactly like what they found for me ! So follow through ! This was the best result I could have from early detection !!! My hysterectomy was 3 months ago and I'm feeling great and so much less fear of any type of cancer in that area !
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Hi everyone,
I got my biopsy results today, no uterine cancer just an 'ugly environment' as the ultrasound tech put it ! I haven't seen the report yet so don't have the exact wording, but they did call just to let me know I don't need an immediate hysterectomy. Nice to know before the weekend...
Tammy, sounds like we're in the same boat at the same time, let me know what your doc says, it will probably be a few weeks before I get in to see mine. Now, like you, I probably need to decide: give up tamox and switch to AI, and/or have ovaries removed or switched off, and/or hysterectomy? I'm menopausal only when on tamox, otherwise still hovering towards pre-men.
Happy Easter and have a lovely weekend !!
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Hi gals, I spoke with both of my docs yesterday: Onc. and Gyn. They both want to take a "wait and see" approach." Of course, my Onc. does NOT support a tamoxifen holiday, but truth be told, I have already begun one. Shhhhh...... don't tell anyone......
They concur that I am still producing enough estrogen to bring on periods every couple/few months. My Onc. defers to my Gyn. in terms of decisions about "those" parts of my body. I am still bleeding so heavily I cannot believe it. Makes you real tired and "loopy", doesn't it?
Well, we're all in this together. We are a group of women who were diagnosed at a "weird" age - 40's - most of us were peri-menopausal at the most, and are dealing with tamox./chemo induced menopause and all of the beauty that goes along with it! Let's continue to talk. We are our own "study."
Enjoy your weekend everyone!
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I was 50 when diagnosed and still getting regular periods. The Chemo started the chemopause after 2 of the 4 CT treatments. I started Tamox in July of 09 also and almost took a holiday last September due to very bad joint pain. Oncologist suggested it but then rescinded I guess when I was going to do it she looked back at my pathology and said with the grade 3 and an oncotype score of 40 I shouldn't do it. So I didn't. I've been to a rheumetolgist about the pain. Bottom line, I have lost weight like all my docs wanted, since this year been diagnosed with Hypertension and am on meds now for that too, the joint pain is not as bad with the weight loss but still need to loose 10-15 more lbs. Also got diagnosed with the start of a caterac on one eye last June and I can tell my vision has deteriorated even more since then.
Sorry just venting, things could be a lot worse!!
Happy Easter all!
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Just want to say if you are considering a hyst/bso, try to find a doc who has experience doing the da vinci robotic surgery. An overnite hospital stay and a very quick recovery, compared to having the abdominal procedure. And the gyn cancer worry is gone
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mymountain,
Thanks for the advice! That is EXACTLY what I looked for when I switched GYN's last year. I went with the doctor in my area that was highly skilled in Da Vinci figuring that, if I was going to have a lot of GYN issues, I would go ahead and have a hysterectomy!
PattiB,
Feel free to vent any time! Thanks for the reminder to all of us to have regular vision checks. I am overdue for mine and intend to schedule that this week! Hope all goes well with your biopsy today...
comingtoterms,
Mums the word! Your secret is safe with us!
I do really find it surprising how young many of the women on this site are considering the average age for a diagnosis of breast cancer is 61! I guess the numbers here may be skewed a bit because there are many older people who do not use a computer!
We are, indeed, our own study! I think the medical community just hasn't figured out how to deal with chemically induced menopause. I am starting to think that, maybe, many of the rules that they apply to post-menopausal women, such as having a super thin uterine lining, just don't hold true when your menopause is artificial. Just my opinion and not based on any research that I have done! Only time will tell.
JackieBrown,
Yay for the benign results! Let us know what your doctor has to say. I see my Gyn on May 5th and then my Onc on May 20th. Should be interesting!
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Thank you all for continuing to post. This is wonderful. I have talked to my doctors often about Tamoxifen and my concerns about it because of my unknown menopausal status and they are so consumed with the "protocol" that they seem unwilling to talk about the negative aspects of it. The ten years between 40-50 are VERY unpredictable, horomonally speaking! We are bouncing all over the place! All of us were diagnosed with ER/PR+ BC. Are more women in our age group diagnosed with this type of BC? Is it because our horomones are so out of wack? These are important questions. I think a study should be started on women of our age. Much could be learned. I send white light to all of you every day. Namaste. Tammy
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I had my Endo Byopsy this morning and was expecting it to be very painful like the cervical byopsy I had 20 some years ago. Have to say the doc was right and it was very tolerable, some cramping and some spotting. He said the collection of fluid and lining looks good and I will hear from him either way withing the next week and 1/2. Feeling much better now about this. It is great to hear about the new techniques for hysto so I can be sure to ask about this if I need to. I do think my doc is listed as doing some sort of robotic surgery not sure if that is DaVinci or not.
Thanks for all your support and info - this website has been such a godsend for we survivors!
Diane - thank you for creating this board and all who offer their words.
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Hi everyone,
I met with my gyne today, have yet to schedule appts with breast and gyne oncologists though. We discussed pros/cons of hysterectomy and oopherectomy, and options regarding tamoxifen. Tammy, what you say is so true, at this age we are all over the place hormonally !! Also, lack of estrogen is a good protection against cancer, but in my case at least it is not good for my mind or certain parts of my body! I experience all sorts of tamoxifen side effects including the effect on my endometrium, impact on my memory, difficulty with sleep, and of course the dreaded weight gain. My gyne outlined a few options and I am wondering if any of you have any experience with any of the following:
1) zolodex (lupron) injections and aromotase inhibitor
2) oopherectomy/hysterectomy, aromotase inhibitor and estrogen patch to counter side effects
3) reloxifen (evista) instead of tamoxifen
4) continue tamoxifen and count the days until I finish my term, in 2+yrs
The problem for me is the lack of estrogen is not easy for me to manage physically and mentally and continue a busy sane life with 3 young children, husband, etc. However my grade 3, lymph node positive, highly ER+ diagnosis makes estrogen very undesireable. I am not totally menopausal yet so anything I do will be putting me in an uncomfortably 'unnatural' state.
Whatever I choose, surgery is also in the cards as I need to at least remove the endometrial polyp and do another D&C (for the 3rd time) or possibly do the ooph/hyster.
Of course none of this is a total surprise, and none of it is bad news, so apologies for sounding down, being in this gray area is just getting to me right now. Thank you for letting me vent
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jackiebrown, re your option #2. Might not be the same scenario as you and I certainly don't mean to scare you but only relay what I know. My cousin, BRAC2 + had a double mastectomy, ooph/hyster and was put on AIs + patch. She developed shortly thereafter another tumor (we figure the BS must have forgotten breast tissue somehow...) and has had to undergo radiation, 4 rounds of TC and is now on Tamox....poor girl, I feel so sorry for her
Second opinions could not believe their eyes that she had been given estrogen patches !!! -
Hi jackiebrown,
I wish I could help with your decisions, but have no more information than you at this point. I thought options 1 and 3 were only possible after you have completely gone through menopause, which is considered one full year without periods? I am so sorry you have to go through yet another D&C.....
don't apologize for venting - that's what we're here for! Tammy -
I saw my GYN today but she could not get my cervix to open enough to get the instruments into my uterus to do the biopsy. I don't know if anyone else has had this happen but it means another visit next week. She has given me a prescription for Misoprostol, which is inserted into the vagina the day before the procedure to help the cervix dilate a bit so the biopsy can be done. I hope this will work so I can finally get this done. The thickness of my uterine lining is 12 mm.
I have never had children and have been in menopause for about ten years. I'm not sure if this makes any difference or not. I would appreciate any feedback. Thanks. -
I just heard from my Dr. - my byopsy was benigh - yeah!!! Aggie - he did have to trick my cervix into opening by making me cough. It did work and the procedure was ok just some discomfort.
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Met with the Onc OB today.
He said he doesn't recommend a hysterectomy or Ooph. That the Tamoxifen will stop my periods for the next five years (highly ER+). If I have any bleeding at all (periods, or after sex) he will have to do a uterine biopsy via the OR (I have a bicoronate uterus and to biopsy both chambers requires OR). If that becomes an issue (happens more than once, we might want to revisit the whole hysterectomy idea.)
He also said:
1. He's never heard of anyone not "metabolizing" Tamoxifen...or that it doesn't work for some women.
2. There are no tests to know if it is working (if it's not I will start bleeding).
3. There is no such thing as producing too much estrogen unless you are morbidly obese. (And this often resutls in uterine cancer, etc).
4. He recommends I continue having a yearly pap.
That's it.
He said having BC doesn't raise my risk significantly (2 1/2 percent) for getting ovarian/uterine cancer even on Tamoxifen. And in his opinion the potential complications from surgery are greater than the risk of cancer AT THIS TIME.
So, I guess that's that.
I'm happy with it. My RO is the one who suggested I have my ovaries removed .. in an effort to be "aggressive." But the Onc GYN said, risks outweight benefit at this time.
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Good to hear Tonlee, I bet u,re relieved. Txs for the feedback from ure
doctor, that,s very reassuring -
Yes Luan, I feel better.
Except I was surprised he "hadn't heard" of poor Tamoxifen metabloization.....it was discussed at the San Antonio conference in Dec 2010....
http://www.medscape.com/viewarticle/734021
Oh well..
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