Over 55 - stopped Tamoxifen - Period returned - ??

bradswife

I am 56 years old and was on Tamoxifen for 10 years. I stopped in January 2019 at age 55. I "thought" I went into natural menopause 3 years ago when my periods slowed in my early 50's and then stopped altogether. In June 2019 (5 months after stopping the Tamoxifen) I had spotting after not having a period for about 3 years! Shock!

I had further spotting this year in July, September, November and December (just this week). I had a uterine biopsy (negative) and vaginal ultrasound (showed thickening to 7-8mm) last summer. When spotting and full-blown periods continued to happen every 6-8 weeks, my GYN suggested a D&C in November which found nothing concerning except "typical hyperplasia". Now 4 weeks after the D&C, I had a slight period again (Merry Christmas to me!).

I am thinking that my bleeding/spotting is truly a period and not "abnormal post-menopausal" bleeding. I'm not sure I am actually in menopause -- even though the one time FSH and estrogen tests a few months ago showed I am postmenopausal. I think the Tamoxifen must have put me into menopause early (but it didn't happen until I had taken it for over 5 years!), and when I went off of it last January, my periods slowly returned. Another reason I think it is a period is that I found I am back to my "old self" as far as more sexual desire recently, vaginal wetness is back, and the week before the spotting/bleeding I am having breast and nipple tenderness. The "cycle" is regular enough and the bleeding only lasts for 5-7 days as I used to have... and the menstrual cramps are back.

So my GYN doesn't think it's a period and says I am in menopause due to the FSH and estrogren tests. Since the bleeding is back and I can't take Progestin for the hyperplasia because of the breast cancer, she wants me to have a hysterectomy. I don't want to have surgery if it's not needed! I truly believe my periods have returned. Has ANYONE had anything similar to my experience?

How do I know if this is truly a period or just a thickened lining? I am happy to have things back to "normal" -- but I am concerned if there are hormones running around my body since my cancer was hr+. Any feedback or experiences would be welcome! Thanks and happy 2020 to all!

pupmom

I'm confused. Is having a period at age 56 "back to normal?" I went into natural menopause at 49, so maybe I was early.

edj3

I'd reach out to my MO, personally.

bradswife

To pupmom... I've read menopause can happen naturally from late 40's to late 50's with avg age of 51 or 52. I just turned 56. By "normal" i meant that I don't have hot flashes or other menopause symptoms, and the sexual desire and function is back (after being gone for a few years). :-)

To edj3... I think I will call my oncologist and talk through this with her. She is the one I started the process with last June and she suggested I see my GYN to make sure there is no endometrial cancer.

farmerlucy

I was premenopausal and had an ooph at 53. Then I had post menopausal bleeding, several Biopsies and a DNC. Finally I asked for the hysterectomy At 55. I was tired of all the gyn visits. I had a total open hysterectomy. I should have done it years ago. I don’t think I’d do the ooph again. I miss my estrogen.

rozem

hi ladies …. I am bumping up this older thread

so I stopped tam 3 months ago after 7.5 years with my MO's blessing and on her recommendation. I am 51 years old - I was only 42 when diagnosed and my periods did return after chemo. I was chemically shut down with zoladex for 3-4 years. Then tam for the rest of the time and zero periods. I mean the assault on my ovarian function has been happening for over 8 years!!!

my period just returned - I know its a period and not abnormal bleeding because I just had a D&C and biopsy in Sept 2019 and it was all clear - its been over a week of it

how can this be??? and its it safe given my ER status??? my oncologist released me to my family doc so now I have made an appointment with her and will have to be referred UGH!!!!

anyone in the same boat?????

bradswife

Hi rozem! I am the one who started this thread. I'm still on the bleeding/spotting rollercoaster at the age of 56... I met with my oncologist today and she confirmed with my GYN that the bleeding I have been having is from hyperplasia which may or may not be from the tamoxifen I took for 10 years. I started bleeding about 6 months after stopping the tamoxifen. I thought is was a period. I had a biopsy that was negative last June, an ultrasound in July that showed thickening to about 7mm, a D&C in November since I continued to bleed every 6-8 weeks. The bleeding is light most of the time with just a light pad needed. Now my oncologist and GYN agree that I should have a biopsy/ultrasound every 3-6 months to make sure the "simple" hyperplasia does't turn into atypical cells/pre-cancer. If I don't want to have the bleeding and ongoing tests, I can have a hysterectomy. I am choosing to "ride it out" for 6 months or so... if the bleeding continues or gets closer together, I may consider a hysterectomy. Was your D&C completely normal? No hyperplasia, polyps, etc.? Have you had a vaginal ultrasound? It's so hard to know what to do next and what is normal anymore! Good luck!

rozem

Hi Bradswife thanks so much for your reply!!!

I had a polyp on ultrasound but when they went in it had resolved. No other issues, everything was negative/normal. The lining was thick but it has been through the entire time I was on tam

I made an appointment with my family doc who will most likely refer me to my gyn. Not sure if I need to get referred ba k to my MO at this point

Sure feels like a period. And it’s quite heavy and it’s been over a week

bradswife

Hi again Rozem,

I know what you mean... I've had bleeding since last June and have seen 2 docs for it. I started with my oncologist who referred me to a GYN who ran all the tests and did the D&C. The bleeding continues. Since I started with my MO, I called her and had an appointment this week just to talk through my questions and ask her how to best proceed. She agrees with my GYN so we will make a plan to wait and do a biopsy and/or ultrasound every 3-6 months to make sure nothing suspicious shows up. I feel better after talking with my oncologist.

Best to you... praying we both get this resolved so we can move on!

ceanna

I would recommend continuing follow up checks based on my experiences. I had heavy periods through my early 50s and lighter periods for years after. I had had two different D & Cs and told nothing was wrong. Blood tests showed pre-menopausal level FSH and I often felt like I had pre-period fluid retention and cramping, so doctor told me I was just lucky enough to have my period into my late 50s. Yearly I went back for pap and nothing was detected and again another D & C. Finally after changing GYN because of retirement, the new GYN ordered a internal pelvic ultrasound. It detected a polyp and some thickening in lining. Once polyp was surgically removed, I have not had any bleeding. Fortunately was not cancer, but numerous D & Cs and tests missed the polyp for years. Anyone need a box of tampons?!!! LOL!!

bradswife

Thanks for your input Ceanna! It's frustrating when a test isn't ordered and something is missed for months or years... I have had a vaginal ultrasound, biopsy, D&C, and bloodwork in the past 6-7 months. I think I've covered it all! I plan to continue being monitored rather than have a hysterectomy at this point. It's good to know others have done the same thing in a similar situation.

rozem

thank you everyone for your input. I saw my family doc yesterday as the bleeding was heavy and I had some clots ugh! she did some bloodwork checking for anemia and my hormone levels. I have to have an ultrasound to check for thickening of the lining. My uterine lining was always thick on tam She wants to start there to get some idea of what is going on. Today its much lighter but I have been at this for almost 2 weeks! she said she has seen this happen although not common after the amount of treatment ive had.

I really don't want a hysterectomy...I know I'm skipping ahead here but I hope that's not what it comes down too. I've had a lot of treatment and did not have an easy time with my surgeries. lots of down time and don't want anymore

thanks and ill update after I get my results back

rozem

Ceanna - sorry forgot to mention she doesn't think its a polyp due to the amount of bleeding I am having...was that your experience? this feels like a full blown period

ceanna

rozem, hope the doctor can determine the cause and hope, too, that it's nothing more than regular period returning. Mine was cyclical enough to be pretty regular and some months heavier than others, although much lighter than my early 50s when I was premenopausal. Occasionally I would have a little clotting along with cramping and fluid retention (which was common for me before regular periods over the years). Like I mentioned, my FSH level always looked like I remained premenopausal. My new GYN would say never it was a period. Once the polyp was removed, I didn't have more "periods" and my GYN says there's no need for FSH test again, so I guess I'll never know exactly when my periods stopped and it was just polyp bleeding. I know some women still have periods into their late 50s and I knew a woman who even had an "oops" baby at 56, so anything is possible!!! Please keep us updated on how you're doing. All the best.

puppymama09

Hello, everyone, I’m having a similar situation. I started chemo when I was 43, it stopped my periods. I started tamoxifen at 44 I took that for 2-3 years then I was tested and told I was post menopausal. I switched to Arimidex. I stopped that at 2-3 years because of osteopenia. 10 months after stopping Arimidex I had a period. Literally right before turning 50😳happy birthday to me😒. I’ve had a transvaginal ultra sound no thickening. I did have a fibroid. I had no period then for another 6 months, now I just had bloodwork done to check my FSH. Don’t have results yet but I just started my period again. I know my gyn is gonna wanna do a biopsy, I really don’t wanna do that. Sounds painful. At this point I’d really just like a total hysterectomy I’m tired of dealing with all this. I’ve definitely been hormonal since going off Arimidex, grouchy, sad, stressed etc....I liked it better when I was on meds I felt very even keeled Plus my breast cancer was 95% hormone fed. Farmer Lucy I notice you regret getting a hysterectomy. Can you tell me why? At this point I feel estrogen is the enemy

rozem

puppymama - I think that's where this road is leading for me as well - I'd like to know Farmerlucys experience as well

my bloodwork came back that I am firmly menopausal - which is worrisome as at least if it came back pre-meno we could chalk this up to an odd period. The only reason my gyn said she is not worried is I had a negative biopsy, a clear D&C and hysteroscopy 6 months ago. I am going for another ultrasound and we will go from there

anyone had menopausal bloodwork with bleeding? ugh

bradswife

rozem -- my bloodwork shows I am menopausal at 56... I also had a vaginal ultrasound (showed 7-8 mm thickening), negative biopsy 6 months ago and D&C in November. Diagnosed with "hyperplasia without atypia". I've had several spotting episodes since late December. I met with my oncologist who said just watching and testing every 3-6 months is fine since we know there is not cancer or polyps, etc.. She thinks its the hyperplasia. No need to do hysterectomy unless I want to just get it over with. Meeting with my GYN next week so see the next steps. I'm thinking another ultrasound to see if there is still thickening after the D&C. So confusing to know the "right" steps...

rozem

thanks so much for responding bradswife - my u/s came back with thickening, now they want me to repeat doing the one that the "shoot" the water in there and get another look. Plus my family doc sent me to a clinic that is not favored by my gyn so here I go again. that makes me feel better that your levels are menopausal as well - seems the concern is post menopausal bleeding. My family doc seems a lot more concerned than my gyn....which I guess is better than my gyn being more concerned since she is the expert

I will report back as I get more info- hopefully this helps other women searching for the same answers!!!!

bradswife

rozem -- yes, my docs are not very concerned since it is hyperplasia without atypia. But they do want to monitor to make sure it doesn't turn into something else. My oncologist said she is sure the bleeding/discharge is from the hyperplasia. I think the next step for me is to have another ultrasound to see if more thickening has built up again after the D&C in November.

I started this thread since I couldn't find much info on this out there other than "take progestin or take it all out"... I can't believe those are the only 2 options! I took Tamoxifen for 10 years and it may have caused all this confusion in my body... but I am an 11 year cancer survivor and the breast cancer has not come back so I am fine with a little bleeding! Just annoying after I thought I was in menopause and done with all this! If I have more to share in the months ahead, I will add to this thread.

We continue to fight through all the after-affects of our breast cancer battle. Blessings to you and all of us survivors!

bradswife

Update after GYN appt last week -- My GYN is not concerned about cancer or anything else at the moment, but she is concerned that it might turn into something down the road. I have hyperplasia and adenomyosis which is why I continue to spot every other week or so. We will do another biopsy in April (late one was last July) just to be sure nothing has changed dramatically. If bleeding continues through the summer and fall, I will schedule a hysterectomy late next year or in early 2021. If it does continue, I'm sure I will be ready for the surgery to just get it taken care of. :-)

MinusTwo

Bradswife - after years of menstrual pain & copious bleeding, the hysterectomy was the best thing i ever did. I was mid 40s and through with child bearing. Once they opened, the endometriosis and fibercystic conditions were horrendous. They were able to leave my ovaries so no immediate slam into menopause. But for the live of me I can't figure out why I kept putting this off over several years. I was a totally new woman afterwards.

I don't know your age, but you may want to consider going ahead with surgery this year. Best decision I ever made.

Falconer

Has anyone heard/ seen/ been offered an endometrial ablation? Two different doctors gave me different opinions about it. I’ve had two endometrial biopsies for each of the years I’m on Tamoxifen because of pain and bloating and then after the TV US the biopsy.


I’m 49 and this month is the first without a period- weird for me- except when I was pregnant and on Lupron I’ve always been regular. I do not feel at all pregnant and each of the four times I was I know just how that went. So im guessing it is as you’ve all described it- Tam doing weird things to my uterus.

bradswife

Thank you MinusTwo... appreciate your thoughts!

And for Falconer -- my GYN just told me she wouldn't do ablation on me because of my history of breast cancer. Ablasion can cause some thick scar tissue which can "hide" atypical or cancer cells in the future. So she is not a fan of the procedure. You might ask more questions about it if you decide to pursue it. Good luck!

Falconer

Thanks Bradswife. Hope your decision making goes smoothly.