Endometrial Cancer from Tamoxifen, anyone else?

first off, I am post-menopause and was on tamoxifen because of my DCIS diagnosis. One of the possible side-effects of tamoxifen is more moisture, which I frankly welcomed!! - but it never cascaded down my legs!!! looking back, I realize that something might have been going on in June when I started to see small brown stains in my panties. No smell, not itchy - always came out in the wash - I assumed another tamoxifen discharge - then in August- September - I noticed pink or red and based on all common warnings to go to doctor if there is "spotting/bleeding" post- menopause - that is what I did. Had a pelvic exam which verified the origin of the blood, I proceeded to have a transvaginal ultrasound which showed thickening and a polyp and then an d&c, which from my reading of the pathology report (have spoken with the gyno by phone, but actually face to face appt is Friday) indicates the cancer was in the polyp. 

I am not ready to give a history of my pathetic attempts to avoid just the situation I find myself in today - but if it is any comfort to you, over the course of my 4 years and 5 months on tamoxifen - I experienced thickening enough to trigger 2 d&cs which showed no cancer.  I (ever optimistic) interpreted that to mean - it caused thickening and not cancer in me and therefore didn't question that my gyno didn't schedule me for a regular ultrasound for like 18 months - and perhaps this gap was the difference between pre-cancer cells and cancer cells.  

At this point, I know I will have a hysterectomy - which I would have
had if pre-cancerous cells had been found earlier or if my gyno had
said something to the effect of your lining keeps thickening from the
tamoxifen - if it is reacting so strongly - it very well might develop
into cancer - lets do a preventive hysterectomy, but he did not advise
that (of course it is going to be interesting to hear his version of
events)!!! so now I am hoping that the hysterectomy will do the trick -
best outcome will be that I will not need lymph nodes removed or follow
up radiation/chemo.

from my experience, ultrasounds show expected or unusual thickening and things like polyps, so the fact that yours looked ok is great.  Ask for a copy of the pathology report and see for yourself. I would say go to the urologist and if you are still uncomfortable see if your gynocologist would do an endometrial biopsy or d&c or explain why not?  but here is something else - I searched in history for other women on bco who have been diagnosed with endometrial cancer and didn't have much luck - most mention has been concern, rather than diagnosis. 

Lekker - after a laproscopy for infertility 30 years ago! the surgeon sat on my bed and drew a picture of a uterus/fallopian tube set up and said, this is normal, she then took the side of her pencil point and from top to bottom, went back and forth covering the drawing and then said, and this is you. Apparently I am filled with scar tissue, from what,  I don't know, I never had any pain - my current gyno says it might have been caused by endometriosis. Subsequently, had surgery to open/free up the ends of my fallopian tubes - to no avail - but there was concern at the time that my urethra? ureter? was nicked - though it turned out not to be.  Consequently, I don't think I am a candidate for less invasive/easier to recover from hysterectomies, I think they are going to have a hard time freeing up my uterus/ovaries for removal simply because I think they are stuck to everything else. so - that is a battle not worth fighting - I am, however, going to request that no lymph nodes be removed unless there is clear evidence or reason to believe  that the cancer has spread beyond the uterus. I would rather have radiation - if they give me that as an alternative. And I thank Marple for directing me to Kira's posts because they contain references to studies which question the value of lymph node removal in early stage endometrial cancer. 

Lekker -   Most of the info I am finding on hysterectomy is about the new procedures so no apology necessary. I am not going to fight for that - or for my cervix! I didn't even know that was often removed.  I am going to fight for my lymph nodes!!! Since I was in my twenties, one foot (obviously) and that leg (a little) - are swollen - and the swelling in the foot changes with the shoes I wear. Thought it was because I dropped a crate of milk bottles on my foot - but who knows. Many years later - my mom casually mentioned that her cousin Sylvia had one leg bigger than the other! WTF??? anyway - that makes me afraid I might be prone to lymphedema in the legs. To answer your question,  my abdominal  scar tissue has never given me pain! I never had menstrual cramps! I have not had any painful side effects from the tamoxifen - am not in any pain now!

3 good things in advance of my surgery - :

1. I measured 5 ft at my primary doctor's office. I subsequently told the hospital nurse in my pre-op telephone interview about the discrepancy. She said that getting the BMI wrong would not be life-threatening but the loss of 3 inches did put me into a different category - obese? morbidly obese? fat shaming?? She made a note that I should be measured again.

2. I checked my lumpectomy biopsy pathology report - 100% ER+ confirming that my decision to take the tamoxifen was a logical one which I would probably make again. 

3. Went to the grocery store mainly to take advantage of bargains/coupons and realized that I had forgotten my wallet with the cash/credit cards. Thank heavens it was a slack period!!!  I had my stuff on the belt but the cashier hadn't started my order when I realized the problem. I explained to the woman behind me that I might have to bail out - putting my stuff back in my cart. She said don't worry. I then realized that I did have my check book but not my driver's license or grocery store card (which I use for exciting exclusive bargains!?) The cashier was very nice and processed my order then asked for my phone number but it didn't show up in the system - we tried this a few times. The woman behind me said she would help, she offered to pay for my groceries, when I told her no way, she then offered to take my check and pay for my order with hers- she thought I looked trustworthy. In the meantime, the cashier called over the supervisor who took me to another register where we tried again, she then did some research and discovered that I was in their system but not for check cashing.  She took my check with no proof of identity only saying that I had to promise to go to customer service and show them my driver's license when I come in next. Anyway I gave the supervisor a big hug, ran back to the original register and gave the cashier a hug and of course an big hug to the lovely customer who was willing to help out. When I got home I called the store and spoke with the manager about how I appreciated the kindness shown by the supervisor and cashier - I even remembered their names.  On the bad side, I am probably losing my mind and should not be out and about, on the good side, aren't people nice?  In this case Women helping Women. made me feel good.

Coraleliz - Seriously I was so blind-sided by being told I was 4'9" that I wasn't as focused as I had meant to be at the visit with the surgeon. The impression I got was that he still intends to take lymph nodes. This past Thursday I requested a phone call prior to surgery on Tuesday - but haven't heard from him - yet.  The way I want it to proceed would be hysterectomy - during the procedure, uterus etc sent to pathology, if there the cancer is not in the uterine wall - or has not breached the uterine wall then no lymph removal,if it has, then ok on the least amount of lymph removal necessary - if post surgery pathology shows cancer more advanced than pathology during surgery showed - then I am prepared for more surgery.  Also, I freaked when he said he would not touch the ligaments (for the purpose of  preventing future prolapse) because I might need radiation. Well that floored me because I don't want radiation. I was a totally compliant breast cancer patient. Accepted all recommendations for lumpectomy, radiation, tamoxifen. This is different- I feel because of the location - so much else going on in the pelvic area - makes for more quality of life destroying side -effects - bowel/bladder issues. I understood where he was coming from, but from where I was at, I hadn't wrapped my head around the possibility that radiation would need to be discussed because I (wanted to ) believe that this has been caught so early!!! His even mentioning the possibility that I might need radiation was actually shattering to me.  Which is why I am so delighted that my three good things actually restored me at least part way to my usual jolly-self.

Today, my first follow-up appt at which I would have presumably learned for the first time the results of my surgery on 1/21 was canceled due to a snow storm. I told the person who called that I insist that the doctor call me TODAY. He did!! Without my revealing that I already knew the path/surgical results, he confirmed that it was early stage and no invasion - the great news is that no further treatment is recommended - I had assumed that at least a touch of radiation would be suggested and that I would have had to fight that. ALSO, the follow-up will be just visual, no cat scans. Yippee! He took 7 lymph nodes BECAUSE the tumor was grade 2 - I have made peace with that. 

I am thinking about posting on the DCIS board something about questions to ask your MO when you are post-menopause and  tamoxifen is recommended. My research into tamoxifen had previously been from the breast cancer patient point of view. Reading the endometrial cancer literature gives a fuller picture of the risks and early warning signs. But  I am in no way warning women off of tamoxifen - my DCIS was 100% ER+ and I do not regret taking it - I just wish I had been more fully informed.

I looked around at the Memorial Sloan Kettering, Dana Farber and MD Anderson websites to see what they were doing in terms of surgery/lymph removal. It seems that even at these cancer centers use of the Da Vinci robot for endometrial cancer is rather "cutting edge" - so whoopee for me. I  think it was on the MSK website that sentinal node biopsies were being explored. The literature seems to suggest that removal of lymph nodes is not necessary for early stage and sometimes grade 1 was specifically mentioned and that is what the surgeon kept going back to, both before the surgery and on the phone call mine was grade 2. What is interesting is that tumor size doesn't seem to come into play much. Mine was 2.2 cm - which seems big to me eventhough it hadn't penetrated anything.  I also read that some believe that the endometrial cancers  progress through hyperplasia and then cancer grades 1 then 2 then 3.  I haven't heard that with breast cancer, have you? Anyway, the surgeon said he wasn't going to take the lymph nodes that could cause my legs to swell up. He seems to dismiss the possibility of groin lymphedema from what he planned to take. He is relatively young - I am left with the impression that the gyno oncologists are way further behind the breast surgeons in acknowledging lymphedema. A few years ago I attended a conference at which a lymphedema therapist spoke and heard for the first time that lymphedema could occur in places other than the arm and trunk and be caused by surgery/accidents not necessarily BC related. I am going to track her down to learn about my risks, what the symptoms are that I should look for and what preventive measures I can take. I read Bathsheba's Breast last year based on recommendations on BCO. paart was a fascinating history of the advances in breast and lymph node conserving surgery that came at the insistence of high profile women patients and how far behind their European counterparts the US breast surgeons were in the 20th century.