tamoxifin and endometrial cancer

Got the path: focal areas of high grade atypical cells without frank cancer.



Still ticked off that tamoxifen caused this, and my onc didn't have any concern despite 3 D&Cs, but relieved that my gyn caught it and sent me to a great and caring gyn onc

Oh my  . . . what can happen in a year and half. After finally getting a clean report from the Gyn in December 2012 (took two weeks to hear from  him), I didn't go back for my 6 month vaginal ultrasounds (I skipped most doctors appointments since then, except the oncologist, and I finally figured out that I was just trying to ignore that I have breast cancer so I got busy and made all the missed appointments in July). The Gyn I'd seen before had changed offices from a group practice to a solo office. I saw him early in July and the ultrasound showed a fibroid that I didn't know I had, thickening, etc., so he ordered a pelvic CT. His office staff sent me on a wild goose chase to the hospital where the test was to be done (can't make appointments in person, need the insurance authorization before they can schedule, etc.). My insurance company turns authorizations around in two days or less so when it got to be the next week, I followed up and learned that my case had been sent for review to the insurance company's Medical Director and was pending as he/she felt I should have an abdominal CT as well. They could make the determination that day if my doctor would have a "peer-to-peer" phone consultation. I contacted my doctor's office and asked to have him call the Medical Director (they didn't even give the doctor the message). The approval came through early the next week anyway.

Then I had to call several times for the doctor's office to get the right info to the hospital so they could schedule me and I learned that the hospital Radiologist was recommending a MRI not a CT. The doctor's office started over with a new authorization request and, again, I had to make several calls to them and to the insurance company before all the info got provided. Finally, everything seemed set for last Thursday (a full month after my appointment), I got to the hospital to have a pelvic and an abdominal MRI only to learn the hospital was still waiting for some documentation on the abdominal MRI from the doctor and was unable to get through to them by phone or FAX (a problem, I've had several times too). I went ahead with the pelvic MRI and decided that I'd be finding a new doctor. I called the doctor's answering service that evening (because of the delays in trying to reach the doctor's office, they finished up with me after five) and his office the next morning to provide the name and number of the Radiologist he needed to talk to resolve the questions about the second test and I asked that he call me to let me know about whether I'd be going ahead with the abdominal MRI and with the pelvic MRI test results. No call yet (he's the one that took two week to call with the D&C results in 2012). 

I started looking for a new doctor that evening and, as always, went to our state Board of Medical Examiners website to check out names of possible new doctors. while there, I plugged in the name of the doctor that I have been seeing and learned that he had a letter of reprimand that had been posted in the spring of 2013!  His record had been clear when I checked back in 2012. I watched the hearing (the board has video archives of all their meetings) and learned that his hearing was the week after he did my hysteroscopy and D&C (probably explains why he was slow calling me with my results, he  had a little on his mind that week!). The complaint came from the Medical Director of one of the largest hospitals in our state. In the video of the hearing, my doctor indicated his surgery privileges had been suspended for awhile, then he had several months where all procedures needed prior review, after that he had cases reviewed after-the-fact, and had just received full surgery privileges back again. What it means is that he had just gotten back those privileges when he did the work on me in November of 2012. 

Since the Letter of Reprimand wasn't posted until March of 2013, the only way I could have learned about his problems would have been to check the agenda of every meeting of the Board of Medical Examiners, something that never would have occurred to me. I had no concerns when I saw him in 2012 except for the delay in hearing the outcome of the pathology report. The lesson that I've learned though is whenever I have a "something isn't right" feeling (which I had as soon as I had trouble reaching his office, getting the right paperwork to the insurance company and hospital, insurance company and  hospital recommending different tests, move to the solo practice, etc.), I should check further. 

Fast forward to today, I've already picked up the report from the pelvic MRI which shows a lot of what we already knew - septate uterus, adhesions and some new things like a fibroid, cysts, and some endometrium thickening but nothing that alarms me as much as it might have - no fluid, no extension of anything beyond the uterus, etc. Tomorrow, I have an appointment with a well-known Gyn/Onc at a university-based cancer center (yes, I've checked his records and he's clean). The medical board had a number of questions for my doctor on why he hadn't referred the cases in question to a Gyn/Onc and he didn't have a good answer. Hearing that, I feel even better about my new doctor.

Cross your fingers for me. Sorry to have gone on for so long but writing this out has helped quell my fears about what might be ahead. I expect at least another hysteroscopy/D&C and/or hysterectomy is in my future. We'll see what my new doctor says. 

My new doctor was great! The biggest thing I learned was that a vaginal ultrasound every six months is not recommended for women on Tamoxifen. See the ACOG statement: http://www.acog.org/Resources-And-Publications/Co... In other words, this last month of dithering around probably wouldn't have happened except the doctor did the ultrasound. Here's some info from the ACOG paper "Correlation is poor between ultrasonographic measurements of endometrial thickness and abnormal pathology in asymptomatic tamoxifen users because of tamoxifen-induced subepithelial stromal hypertrophy (12). In asymptomatic women using tamoxifen, screening for endometrial cancer with routine transvaginal ultrasonography, endometrial biopsy, or both has not been shown to be effective." The Gyn I was seeing and I thought my MO had recommended the every six month vaginal ultrasounds while I was on Tamoxifen. 

Since they did find some "worrisome" findings on the MRI and comparison of CT Colonoscopy from this year and two years ago, I am going ahead with a hysteroscopy/D&C next week. He is also not even sure the other doctor even really got into my uterus since there was no endometrial tissue identified on the pathology report. 

And after a month of worrying, these folks are moving fast. Outpatient surgery is scheduled for a week from Wednesday and I already got the EKG, X-Ray, and blood work done today!

Dianne, I am crying about your post! I went into remission from Stage 2 BC in April 2013. I had a partial mastectomy, chemo and radiation. (I survived cervical cancer 22 years ago). I was put on Tamoxifin and they thought I was allergic so they switched me to a 2nd generation drug Fareston. A little over a year and I decided to quit taking it. The risk was worse than the benefit (doctors state it stops cancer, my research said it only slows cancer growth). Why take a drug that only slows it down but the side effect is cervical or ovarian cancer???  I am having my 2nd period of 1 1/2 years and it has been 26 days long! My doctor is sending me for a sonogram on Saturday. He said he thinks the endometrial lining is shedding but has too many layers due to the chemo causing imbalance, the shock to your system from cancer, chemo and hormone therapy. He could give me injections every thirty days but it would be of estrogen so that won't work. We are looking at a hysterectomy. I am scared and numb all over again. 

Ladies, I need your help. I had the hysteroscopy/D&C over a week ago. My new doctor doesn't give out results over the phone (his staff is very consistent in their answers on this) and due to his schedule and my, my post-op visit got pushed out to September 15. Since I really want to know if I get to plan my trip to Hawaii to see my son or clear my desk for time off to have a hysterectomy, I went to the medical center and picked up the records so I wouldn't have to wait (as you know, waiting is hard). The problem is, I don't know exactly what the pathology report means. I think I'm in the clear but want to know what you think. Here's what it said:

Diagnosis:

• Specimen predominantly of benign endocervix and ectocervix
• Small fragments of degenerate endometrial stroma

So what is with the "degenerate" description of my uterus? I think it probably means old and falling apart and if there were cancer, the words dysplasia or malignancy would have been used, but "degenerate"? Any thoughts or similar words on your reports? 

LOL - I haven't had a period since early on 2006 so never would have guessed that! Thanks for helping me figure this out.

I hope your hysteroscopy/D&C is behind you and went well. I finally saw the GYN/ONC that did mine in August and got the official word no cancer was found. One thing leading to another is a hard part of this BC journey. Good luck to you, I found waiting for the results hard even once I'd seen the report and was waiting for my appointment with the doctor to get the "official" word. 

Having just been through a rough summer with possible uterine cancer from Tamoxifen, I vote for going to a GYN/ONC as quick as you can. 

Thanks to both of you for responding.  I did go to a gyn-onc and had the biopsy done yesterday...now I wait for the path results.  I hate waiting!