Hyperplasia Update

I was first diagnosed with simple hyperplasia almost a year and a half ago. Had first D & C Feb 04 (no hyperplasia but lots of polyps). Tried Megace for 7 months (had slight bleeding every day for last 3 months and vaginal atrophy). Went off Megace and 3 months later had complex hyerplasia. No atypia either time. Doctor (female) was pushing for hysterectomy so I went for second opinion (male). He also said hysterectomy but sent me to an oncol/gyn who didn't think I needed one (as least not now). He sent me back to the second gyn. I decided to stay with the second (male) gyn. He did my second D & C in March 05. I went for my re-check yesterday. He does not want to put me on any medication - wants to "wait and see". That makes me a little nervous. He also said I didn't need a transvaginal ultrasound for 6 months but I said that was too long so he gave me a script to have one the middle of June (that would make me feel better). Then we will "talk" after the ultrasound. If the lining is thickened again he will go another biopsy.

He also said that a hysterectomy "isn't that bad" (I would like to know how he knows when he has never had one LOL). Anyway I would rather "wait and see". I know hyerplasia can lead to endometrial cancer but where I have never had atypical cells this could all be perimenopause related (I'm 56 and not in menopause yet). Also both D & C's came back with no hyperplasia. If all my biopsies (5 in a year) and the D & C's had come back with hyperplasia I might be more inclined to agree to the hysterectomy, but at this point I see no harm in waiting a while as long as I am watched closely.

Anyone have input? Thanks.

Hi,

I think in your case the key is to be, as you say, "watched closely" and keep very pro-active. It was important that you insisted in a new transvaginal ultrasound sooner than later,etc. You might also consider discussing your dx with a gyn/onc; although your dx is not cancerous it can move to atypia and that is precancerous. From my experience I learned that women who reach menopause after age 52 are more prone to get atypia and endometrial cancer.

I'd like to share my experience with complex hyperplasia but with atypia (CHA). Unlike you, I was post-menopausal when I began having every so slight, and only very infrequent, spotting. Several test indicated I had CHA cancer can not be ruled out. My gyn immediately recommended a TAH/BSO. Since I always first seek a conservative approach medically I consulted wtih a gyn/onc including re the possibity of using megace or other hormone therapy to attempt reversal. He said if I were a family member he would strongly recommend a total hysterectomy and soonest. He also said in general statistics show that megace and/or other hormone treatments are most effective in women under 40 while least effective in woman over 50. I got a 2nd gyn/oncs opinion and it did not differ from the first one. Both gyn/onc also said that should I try hormonal therapy, they would want a D&C every 3 month too. Finally all three doctors said that at least in these days the only way to clearly determine if cancer really were there or not was surgery which allows examination of the entire uterus.

I wish you well in your continued attemt to reverse this condition.
Please stay very pro-active and let us know how it goes. I will keep you in that the treatments are successful.

s, peggiesue

Peggysue - thanks for your input. I did consult two oncologist/gyns. The first one (that I did not like) said I needed a TAH/BOS, when I asked about surgically induced menopause he was like "well you will have about 3 weeks of estrogen in your body and then you will deal with it". He would not even give me hormone theapy then. When I went to the second gyn at first he was going to do a D & C (to make sure there was no maligancy) and then do a STAH (leaving the cervix). I scheduled the D &C and then the next day he called me and said he had presented my case to some of his colleagues and the head of GYN at the hospital and he couldn't take my case because there was too great a risk of cancer so he sent me to another onc/gyn at a big hospital here. That onc/gyn looked at all my records and said "what do you want me to tell you - that you don't need a hysterectomy? I don't think you do - you need another D & C and an adjustment in your medication (Megace)" - he didn't think I was taking enough (20 mg daily). He did a repeat endo biopsy (I had one only a month before that came back complex hyperplasia without atypia). His biopsy (after only 3 weeks of Megace) came back normal (I don't know if it was lab interrpretation or not). But he sent me back to the second gyn for treatment. I then scheduled the D & C (whose pathology came back normal - I had been off the Megace 3 weeks when I had the D & C). So I'm kind of in a quandry since the Megace seemed to work, but I know I can't stay on that forever either (side effect, etc). So I guess right now for me the "wait and see" approach is probably the most conservative.

Thanks again for the input.

Mary

Hi Mary,
Actually one of the reasons I finally chose to go ahead with the TAH/BSO, with gyn/onc assisting to take over if any cancer was found, was that I did not like taking a drug with side-effects -most if not all have them. Also, my doctors told me, among other monitoring, I would need 3 month D&C, under gen anesthesia-not a good thing to repeat so often! Finally, they said the only way to determine if there is cancer is biopsy of the organ which is our day and time means removing it -MRI, CTscans,etc. will not show this. As noted in my other post, when all 3 well respected
doctors answered my query "what would you tell a close family member to do if they had my dx at my age" with a resounding "surgery soonest" I was almost licked and ready to have the operation. I see that you have been given different recommendations by different doctors; that would have been very confusing for me.

BTW even after the tri-yes doctor response, I may have tried the wait and see conservative approach but my husband, God bless him, asked me something to this effect "can you really live peacefully knowing you may have cancer which also could spread?" BTW, the results of my D&C with hysteroscope did not show cancer present but my gyn did say she did not like how it looked in there; yet the path reports on my removed organ showed I had a stage 1B, not even 1A. Thus for me the surgery, as reluctant as I was to have it, was absolutely the right choice.

I can understand your current choice - given the varying doctors' opinions and fact you have no atypia - to take the wait and see approach and am glad you are so pro-active so you can help carefully to monitor the situation. Wishing you the very best; may the megace and/or other therapies continue to work for you.
Blessings, peggiesue

Peggiesue - thanks again for your input. I know in my heart that as soon as anything comes back atypical I will have the hyst (not that I even want to get to that stage). Also if the biopsies all come back with hyperplasia I will give in. I just got the path report from my last D & C (the gyn had told me verbally that everything was fine - I just like to see things in print). Anyway I found out from the path report that he not only sent endometrial tissue to the lab but he also sent endocervical tissue (which was nice to know - that was not done in my first D & C). Anyway both samples came back with inactive to weakly proliferative endometrium and no signs of hyperplasia (which is good). I will feel better once I have the sono in 6 weeks and even if it comes back fine I may ask him to do a biopsy just to make sure.

I'm glad you are happy with your decision and may you continue to have many years of good health. Is the oncologist following you? I would have stayed with the second onco I went to but he felt the gyn could handle my case and didn't even give me another appt so I feel comfortable with that decision.

Thanks again.

mary

Hi Mary,

Based your comments on the path reports your doctor is being very thorough and you seem to be in excellent medical hands. This and your pro-active stand should ensure your condition is closely monitored and under control. How wonderful that your latest CT scan showed no signs of hyperplasia! The upcoming sonogram is an excellent check too and I wish you excellent results with that.

Re your query, my gyn is following me at the advice of the gyn/onc who assisted at my surgery. She is highly respected and has followed several other low stage endo cancer cases; she also shares my test results, including yearly CT scan results with the gyn/onc. As you may remember I am a "doubting Thomas" when it comes to doctors but I have compete trust in her and we actually have developed an excellent great doctor/patient relationship. Since I had no gyn when my hyperplasia probs developed as we were new to the area, for me she was/is a God send.

Take good care of yourself and pls keep us updated on who you are doing.

Blessings, peggiesue

Peggiesue - thanks again for your interest and concern. In reading your previous posts, what is CHA cancer? I'm learning a lot of new terminology that I never thought I would have to know and I've learned more about hyerplasia then I ever wanted to know!! I have found the internet a wonderful place but I would never replace my doctor's advice with anything online! Actually I used to be naive enough to think that if I made it to this stage of my life cancer-free I would be "home free" and never realized that the risk increased with age and that late menopause could be a factor.

I try not to let this consume my life but I sometimes feel like I'm on a roller coaster. I'm really in excellent health and feel great so I still find it hard to believe at times that there are "things" going on inside. I've joined a health club (really to encourage my husband to go - he really needs it) but I find I am enjoying it and it's a great stress reliever!

Have a great weekend and thanks again for sharing.

Mary

I had a repeat transvaginal ultrasound on Wednesday as a follow-up to the D & C I had in March 05 for endometrial hyperplasia. The tech was really nice and immediately told me that lining was "nice and thin" 1-2mm!! She even showed it to me on the screen. My doctor called today to tell me everything was fine. I asked him if I should have a repeat biopsy just to make sure and he said if it was 5-7mm he would do it but at this point he didn't want to put me through that. I asked him if I could have another ultrasound in 3 months (Sept) as a follow-up and he said that was fine - whatever I wanted. So now I can have an enjoyable summer and not worry about "what is going on inside"!!

I wish everyone the best and want to say "thank-you for being there and listening" it always helps.

Mary in NY

Hi (((Mary)))

Thank you for sharing your good news. I'm so happy your recent u/s showed your lining to be thin. It's comforting to know your doctor will be doing frequent testing to take good care of you and watch how you are doing. I hope your subsequent ultrasounds are good too!

Crossing my fingers and saying prayers for you~
s,
Beth

HI ((Mary))
I just read the good news re the great test results you got. Have a wonderful, worry-free summer and may your future test results continue to be so good.
s and blessings, peggiesue