I was wondering if anyone has had any experience with a Pap smear coming back with Endometrial Cells.  I have been on Tamoxafin for 3.5 years and Lupron for almost three years.
My gyno called to say that because Endometrial cells were found in my Pap and they should not be there that I need to come in for a pelvic ultrasound and biopsy.  I know that Tamoxafin can cause Endometrial cancer so I am a little concerned. Tamoxafin has also cause me to have fatty liver, high blood pressure, high cholesterol, weight gain, etc.....
Any experience that you can share with this would be sooooo appreciated.

Marcy,
I have not had experience specifically with that.  However, I had abnormal bleeding about 7 months after starting tamoxifen, had a pelvic ultrasound and uterine biopsy, which showed polyp material.  I chose to have a complete hysterectomy as I was looking to reduce my estrogen to hopefully prevent a recurrence of my breast cancer, and a primary of ovarian.
What I did learn during that time, is that while our thoughts immediately go to uterine cancer when we have an issue while on tamoxifen, the incidence of uterine cancer is actually pretty small.  What is common is that tamoxifen aggravates existing conditions.  My onc never told me to have a pelvic ultrasound before starting tamoxifen.  My gyn said I should have had one as a baseline, and because I didn't, we had no way of knowing if tamoxifen was the culprit with my polyps and thickened uterus.  The pharmaceutical sites all state the same, have a baseline pelvic ultrasound before starting tamox.  Hopefully, your abnormal pap is a case of endometriosis, something my daughter struggled with, and yes, it can invade all of your reproductive organs if left untreated.  I know you are scared, but hopefully this is just the result of a condition like endometriosis.
Thoughts and prayers are with you. 

Jennifer
DCIS
lumpectomy 5/02/05
32 rad tx comp 7/07/05
tamoxifen
comp. hysterectomy 4/04/06
Paducah, KY

Jennifer,

Thanks so much for your reply.  I too had an endometrial polyp that had to be surgically removed last December - caused by tamoxafin. 
Once you had your hysterecomy, did you discontinue tamoxafin?

Thanks again,
Marcy

I originally stayed on tamoxifen as my onc said it was kinder to my bones and would be better over the transitional period into surgical menopause.  He intended on switching me to Arimidex or Femara after 3 years, but in the end I chose to stay on tamoxifen.   Up until now it has been the drug of choice for DCIS, and my insurance is truly crappy.  There are studies going on at MD Anderson and elsewhere adding Herceptin to an AI for DCIS, but I decided because my cancer was so small, to opt for quality of life.  I already have joint pain from years of being a horse trainer, I was afraid of the side effects that I hear so many complain about with the AI's.  Just the choice I made, not what I recommend to anyone else.  I finished my five years of tamoxifen last year, and have enjoyed not taking any cancer related meds.  Now, if I recur, I may have regrets, but at this time I am comfortable with my choices.

Jennifer
DCIS
lumpectomy 5/02/05
32 rad tx comp 7/07/05
tamoxifen
comp. hysterectomy 4/04/06
Paducah, KY

Marcy,

I've had the exact same thing happen--an "abnormal " pap smear that showed endometrial cells.  I've been working closely with my GYN for the last 5 years.  I finished Tamoxifen last August, and have pretty constant bleeding issues.  (even though she keeps telling me I SHOULD be through menopause since I'm 60 years old now...)  The biopsies showed simple hyperplasia without atypia, and I was on progesterone the last year.  The hyperplasia is gone, but the bleeding continued, so back for another ultrasound.  That showed a polyp, so I'm scheduled for a D&C on August 10th.

I am pretty sure the Tamoxifen brought most (if not all) of this on, although I had pretty awful periods the 10 years or so before I was diagnosed with BC.

If I would have had a crystal ball, and if it would have ever been recommended to me by a doctor, I wish I would have had a total hysterectomy early on in this process.  But the "end" was always just around the corner, so it was never pushed by me or the doctors.

One thing I've read several times and always tried to keep in mind was that close monitoring almost always catching any possible uterine cancer in very early stages.  (And I've also heard that uterine cancer caused by Tamoxifen is normally very slow growing.)  My doctor says that there is a chance the polyp could be cancerous, but she thinks it's unlikely because she has done so many uterine biopsies on me in the last 4 years....so we'll see.

So it's good that you are being monitored...just hang in there..

Joyce

Portland, OR. DX: 6/09/05 IDC lb Age: 54 PR/HR+ Her- Lumpectomy/SNB 6/22/05 Nodes Neg! 33X Rads Comp 10/12/05 Tamoxifen: '05-'10 PT for lymphydema in breast '06 BRCA Neg 7/08! Tamoxifen induced uterine issues '07-'11 Total LA hysterectomy 12/11

Joyce,

Thank you for your reply.  I really appreciate it.  I am glad to hear you can have endometrial cells in the pap smear and it NOT be cancer.  I was 39 when I was diagnosed and am 43 now.  It's so frustrating the constant barrage of doctor appointments and cancer scares.

Thanks again,
Marcy

OMG Marcy,
My page long repsonse just went into space...crap.  I'll try to summerize.  I've had hyperplasia, crazy growing endometrial stripe(thickness) went from 4 mm pre T to 17 mm after just about 2 yrs, along with grwing fibroids and ovarian cyts,   prompting 2 bx, a d&c bx, numerous US and an MRI.  So although uterine cancer caused by the T is unlikely, it doesn't mean it can't torment you , causing worry and oh yeah plenty more dr appts:   I didn't want to have another abdominal surg, but I finally consented to a hyst/bso and had it done by a gyn/onc via da vinci robot in March.  Sounded like the right move, but have had some resulting problems with the drop in estrogen. (PM me if you want to hear any of that, lol).  My path was neg for cancer but the onc said there were some distinct uterine changes and was a relief not to have to worry about it anymore  T is a double edged sword, helping to prevent recurrence, but drumming up some other problems.   
You might want to check in at hystersisters too. They are like the Komen of GYN troubles.

I hope you get this issue resolved .  Good luck marcy!

dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

Sharon,

Thanks for your reply.  Sounds like you have been through a lot as a result of Tamoxafin.  It's all so frustrating!! 
I had the Pelvic and Transvaginal Ultrasounds today.  Waiting to hear about those results.  My gyno is away so I am scheduled for the biopsy on August 23rd.  Hate waiting!!
I feel like I should just go for a hysterectomy too.  I am going to talk to my gyno about it at my next visit. 
Thanks again for responding. 

All the best,
Marcy

Marcy,
If the US results prompt an endo bx, don't be alarmed.  i was completely freaked out when I had to have the first one.  it is a quick procedure in the gyn office and although painful, lasts only a minute.  Like I said pm me if you want to talk about it further 

dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

A D&C will take care of most endometrial thickening.  I had bleeding long after I was off Tamoxifen but it was the culprit.

A vaginal ultra sound should tell you how thick the lining is.  Ask the tech to leave the screen up while you dress up.  Notice the numbers and you can check online if that is to thick or not.  Mine was very, very thick.

Had many endometrial biopsy while waiting for "them" to figure out why I was bleeding, is really nothing.  I went to work, left, had the procedure and went back to work.
In fact one was during radiation treatments that I had that afternoon and then went to a party.  Just bring a pad as you do bleed from the procedure.  It doesn't hurt.

Hope they figure out soon what you have.  A FSH blood test should tell where you are in the menopause situation.

Hope this helps.

"Prepared for the worst, hope for the best and, live each day to the hilt"


Stage IV  lungs, lining, ribs - Used all the hormonal drugs - tamoxifen, (progression) arimidex, (progression) , Faslodex 250 mg, (progression) femara, (progression), drug break using own estrogen (progression in 7 months), rebooted femara (progression on next scan) Faslodex 500 mg (progression 11 months) Taxol.