Monthly bleeding on Arimidex - please help

AmyIsStrong · February 2013

Thank you all in advance for reading and answering my questions. Here's the story.

Was on tamoxifen 10-09 to 10-12. In Oct of 2012, I started bleeding. Did vaginal u/s, and then D&C. Doc said it showed a polyp on the cervix which she thought was irritating and causing the bleeding. Uterine biopsy was fine.

They thought the tamox might have contributed to this so I went off for a month and started Arimidex in Nov.

OH - some background - had estradiol blood work in 8/11 which showed i was fully in menopause. (Had last period on 4/09 - first day of chemo, never had another one. Was not in menopause AT ALL prior to bc diag at age 51.) Had very little SE on Tamox and/or on Arimidex.

So...started AI in 11/12. In 1/13 had very heavy bleeding for 4 days, like a period only heavier. Doc did u/s - said uterus was unremarkable. Thought it might be a one time thing, agreed to wait 3 mo and repeat u/s if no further bleeding.
Then, EXACTLY a month from the Jan bleeding, I had it AGAIN this month. Not quite as heavy, but exactly like a period - 4 days, cramps, and then done.

Doc has not called back yet (4 days, wth?). But in the meantime, I am stumped.

Here are my questions.

COULD this be some sort of period/cycle? What else could the bleeding be?
Could I have been IN menopause and now not? or could this cyclical bleeding be PART of menopause?
AND - since AI's are for post-meno only, should I not be on it now?

Is this much bleeding cause for a hysterectomy? I would rather avoid surgery BUT my oldest is having a baby in june (first grandchild - yay!) and it is a very important thing for our family. So if I do need surgery, i want it SOON so as to be all recovered by the summer. But I don't know if that is rushing into it.

Thank you again for reading/helping.

Amy

Moderators · February 2013

Thanks for sharing this, Amy.

According to this page, http://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors/arimidex, bleeding can indeed be a side effect of Arimidex. Take a look.

And, definitely talk with your doctor today! Sorry you are going through this!

rgiuff · February 2013

Amy, Ihad started skipping periods before being diagnosed at age 47, and then had even longer gaps between my periods while on tamoxifen. I went 9 months, then 10 months without a period, only to get them back each time for a month or two. A few months after I stopped my 3 years of tamoxifen, I had a period again after 2 years without, cramps, lasted 5 days, heavy at first, then gradually lighter, just like a normal period, same as you. Even though, the Gyn said "Oh, postmenopausal bleeding, and did a D&C which found no problems, I am convinced that it was a period. GYN even said, if this keeps happening, we could just do a hysterectomy, I said absolutely not. I prefer to keep all my organs intact if there is no cancer there. This was about a year ago, and since I am now 52, I think that was my ovaries just having one last burst of energy.

So if these are periods that you are having, there is no reason for a hysterectomy. There are many women who go into chemopause and then years later, resume periods. You say that you were nowhere near menopause prior to chemo, so maybe now that tamoxifen is done, the arimidex may have stimulated your ovaries to start producing again? But being you are in your 50s, and have gone through chemo, your ovaries may not have much life left in them, and I would think that this shouldn't last too long. Of course, it's important see your GYN to make sure that there is no pathology there causing the bleeding, but sounds like periods to me. And if you are not postmenopausal, then you are right, you can't be on aromatase inhibitors.

AmyIsStrong · February 2013

thank you so much for your reply. I FINALLY talked to the doc. She said that even IF it is intermittent hormonally driven bleeding, it increases the risk of uterine cancer, and i cannot go on and on with repeated D&Cs.

She said i can have a D&C now and see if the bleeding does not repeat, but if it does, i really should get everythign out.

I do not have faith that i will never bleed again. it has been 3x in the last 6 mo.

At this moment I am leaaning toward the hyster, even tho I feel the way you do about keeping organs.

At any rate, I HATE being thrust into the patient role AGAIN, I HATE having to deal with medical stuff and the thought of surgery is dreadful.

I will figure this out. Thank you so much again for your post. I was afraid no one would answer.

rgiuff · February 2013

Amy, whether you need "To get everything out" or not, should really depend on what the D&C finds. It there is no cancer or hyperplasia in your uterus causing the bleeding, I don't understand why the doctor is pushing for a hysterectomy. If, in fact, you have resumed periods, this does not put you at higher risk for uterine cancer. Bleeding could be a symptom of uterine cancer, but if the cause is from something non harmful, like periods, then uterine cancer wouldn't be an issue. Has she tested your hormones recently to see if maybe you are no longer in menopause?

And, being the skeptic that I am, I know that GYNs make a living off of doing these types of surgeries!

StellaStarr · September 2018

Hi! I need some clarity & advice regarding Aromatase Inhibitors (AIs) and postmenopausal bleeding (PMB). In my case, I tried all three AIs and stayed on Aromasin the longest. They were all horrible. I was on AIs for a total of...5-1/2 years, stopping in fall of 2014.

In fall of 2016, I had an episode of PMB with a second episode in July 2017. Fast forward to July of this year. I bled twice that month. So -- 4 episodes of PMB in 22 months. Ominous. Nothing was found the first two episodes, but now.....I show elevated CEA and CRP and my LDH was 225 (high end of normal). My Sed Rate (ESR) doubled in 6 months going from normal to on the high end of normal. The FNP I saw in early July also sent me for a CT Scan which showed nothing. Then, my FNP dropped the ball. No discussion about the elevated test results. NO advice on my what I do next. Just silence despite repeated requests for more information.

On my own and it took me awhile, I found an OB-GYN that takes my insurance. I finally saw her in the last few weeks. She was surprised the FNP ordered the CT Scan instead of an Ultrasound, the preferred test in such situations. I had that last week. It showed that my endometrial lining was 10mm thick, twice the normal measurement. Bad news. My OB-GYN is concerned that it means cancer. So am I! I now am scheduled for a biopsy in October. All this should have occurred in JULY. But here I am, still waiting to find out what the heck is happening. I am quite anxious because I had locally advanced breast cancer: IDC, IMPC (very aggressive), DCIS, and metastatic lymph node cancer (24/24 nodes positive, and in my blood stream). I had it all! Several doctors were surprised I was still alive after two years. I am now in my 10th year, post diagnosis. My life has been very hard.

For another reason, I happened to see my Primary Care doc about 2 days ago. I asked HER about the July blood work (remember: the FNP was silent). Because my CEA was elevated, my PC doc was more concerned about colorectal cancer (ignored the PMB and 10mm thick lining) and wants me to have a colonoscopy. Quite frankly, I am overwhelmed with everything else going on and having a bunch of strangers poking around in my anal cavity does not thrill me. The uterine biopsy is bad enough. But I digress.

I am in the 2% Club. By that I mean I tend to end up with the odd, rare side effects that puzzle my healthcare doctors. I end up arguing with providers about the fact that my body is unique despite what they think should happen or not happen. So! While I have read that AIs rarely (is this even true?) cause PMB (like Tamoxifen can), has anyone had this problem of PMB after taking AIs? There is clearly something wrong with my Girlie Parts. I do not believe it is related to my colon for several reasons despite my PC doc ordering a colonoscopy. I am new to my current health plan and so far I am under-impressed (and royally pissed off!) and already planning to go back to my prior plan effective Jan 1, 2019.

Amica · September 2018

StellaStarr

Could you get a referral to a Gynecological Oncologist to get this all straightened out? I mean, I know you are scheduled for a biopsy, but they have more knowledge in this area than a regular OB/GYN. I'm sorry you are going through this.

StellaStarr · September 2018

Hi, Amica;

Thanks for your response. Such trying times.....My current health plan is difficult to navigate. They will not refer me to a Gyn Onc unless there is evidence of cancer, which there is not as of right now. Surely I cannot be the only woman that took the AIs and ended up with uterine abnormalities/cancer.

Monthly bleeding on Arimidex - please help

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