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hyperplasia still questionable...oh,no! hyperplasia still questionable...oh,no!

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  #1  
Unread 04-06-2004, 03:22 PM
hyperplasia still questionable...oh,no!

I had my second D&C on Friday the second. It went well. Less pain and less bleeding than the first one in Dec. So I was hopeful that all would be good. Have follow up appt. with doc on Thursday early AM to discuss outcome of path report.

I just got a call from the nurse at my ob/gyn office. She did not want me to worry all week so she called me today. She said the hyperplasia is still questionable and they have sent it over to
MD Anderson cancer center for a second opinion. Oh gosh! and this is supposed to make me worry LESS!?

I thought I was being pretty good this week and not letting the stress of not knowing get to me. That has now changed!

I was on hormone therapy for 3 mos. Prometrium. He said I needed to be off it for about a week before the D&C, becuase it thins the lining out. (of course, that is the idea)...I was having my period anyway and he said as long as I was off it for at least a week and was not bleeding heavily, it would be ok. I was not bleeding at all by friday...just finished with the yuckies.

I got concerned and wanted to wait a week longer...just to be sure there was enough endo lining to sample. But there was no available surgery time on the 8th or 9th. (good friday). So I went with the 2nd anyway. I was so nervous of an inconclusive reading! and look what I got!! Questionable!!!

I am so upset, I am beside myself! Why did I not listen to my body? Seems like it knew better. I still have the follow up appt on thursday morning, I guess we will talk more then. Glad my mom the nurse is coming with me!!

Thanks for listening, sorry to be such a cry baby.
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  #2  
Unread 04-06-2004, 04:13 PM
hyperplasia still questionable...oh,no!

Oh, girl... I know you're freaking out! I would be too! Just remember, all that's "questionable" may just be they don't know how to stage it... that is, it might have reduced to simple hyperplasia with atypia, or complex hyperplasia without atypia, or simple hyperplasia without atypia. Can be confusing. Don't let them scare you though. You were on a low dose drug with Prometrium. If it didn't decrease your hyperplasia much, tell them you want a trial run with Megace. It's much stronger. Don't let them push you into a hysterectomy yet if you don't want one. There are other drugs/things they can try first. Some women also just need a little longer than just 3 months. I've got an article a friend sent to me, was about a study they did, and out of 13 women, only a certain number (most were on Megace) were hyperplasia free within 3 months. The others needed a bit longer.

So, even though I understand you freaking out, just try to be calm. Maybe some Yoga? It'll be ok!

Pam
  #3  
Unread 04-06-2004, 08:29 PM
hyperplasia still questionable...oh,no!

I know exactly what you're going through, Joyce. A while back ago, I had a biopsy done which came up complex atypical hyperplasia, then a D & C which was also "questionable", so they called me and told me they were sending to John Hopkins. That had me worried very much!!!!!

But it will all work out. Sometimes it's hard to distinguish between complex atypical vs/ just complex, and CA, so they (the pathologists) send the samples out just to make sure.

If anything, it's most likely a stage 1, but keep us posted. Mine came back as stage 1 endo CA and I'm currently treating it with Megase (a progestin).

Hope this helps you a little!!
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  #4  
Unread 04-06-2004, 08:38 PM
hyperplasia still questionable...oh,no!

Joyce,
I am sorry you are so afraid right now, but I am glad they are sending it off to MD Anderson. They will be able to give you the answers. My doctor is there, and it is an awesome place! I hope the report comes back: cancer free!! Did they give you any idea how long it will take to get the report back? I will be praying for you.

Rhonda
Radical hysterectomy, June 2002, cervical cancer, 1b
  #5  
Unread 04-07-2004, 07:19 AM
hyperplasia still questionable...oh,no!

Thank you ladies!
I have had some time to calm down now.

Rhonda - The nurse was not sure how long it would take for the report to come back from MD Anderson, but keeping thursday appt. anyway.
Would you mind sharing the name of your doc there? I have only had a consultation over the phone with the gyn/onc, it was a lady. Maybe you could PM me with that.

BEP - Sounds like you have had much of the same as me. I am just thankful that they are getting that second opinion. I just really don't want any grey area...I think you are right about distinguishing between the staging.

Pam - I am hoping with you that they are having trouble distinguishing the staging. One thing I do know, is there is still something there....lets hope and pray it is less severe than before.

How are you ladies doing on the Megace? Are you still having periods? Let me know..I will be talking to doc about trying this avenue next.
  #6  
Unread 04-07-2004, 08:02 PM
hyperplasia still questionable...oh,no!

I'm doing ok with the Megase. No periods at all, I was having just some minor spotting anyway, so it's not any different. I am hungry, thirsty, a bit irritable, moody, if you will, and depressed. And just recently I started having leg pains, my doc says it's a side effect, but he's having some bloodwork done to make sure all is ok. I'm sure it is...

I hear most women don't have many side effects, hopefully, you'll be one of them! :-)
  #7  
Unread 04-08-2004, 04:17 PM
one week follow up

Hi Ladies,
Went to the doc for the one week follow up after D&C. Still no test results back from MD Anderson yet. Since it is a holiday weekend, I don't expect to hear anything until Tuesday.

He was very upset and still very concerned that there was still hyperplasia, although he did say it was a localized area.

We will have to wait and see what the report says, before we know what action will be taken. I just really hope it has been reduced to something less severe than the complex w/ atypia.

Have a good weekend and holiday!

PS - scootch was impeccible! Only wrinkled paper!
  #8  
Unread 04-08-2004, 05:27 PM
complex hyperplasia with atypia

I had a D&C in March 2003 and the biopsy report came back complex hyperplasia with atypia. The pathologist sent the results to the University of Miami for a second opinion. A highly respected doctor read my report and concluded it's pre-cancer. However, my doctor advised me to go ahead and have a full hysterectomy because it can turn into cancer.

I had a hysterectomy in May 2003 and the pathology report came back CA Stage 1, grade 1 so it's a good thing I had the surgery. However, I have been reading on this site that Megace can help even early CA. Now I am wondering if medication could have helped me avoid the surgery.

Good luck,
Catnap
  #9  
Unread 04-12-2004, 03:46 PM
Results from MD Anderson

Hi Ladies,
Just heard from the doc. Looks like the Prometrium did not do the job. Results still came back with "Foci of complex endometrial hyperplasia with atypia in an endometrial polyp".

There was a note that says,"this specimen shows no evidence of exogenous of progesterone effect". On the day I had this done, I had only been off the Prometrium for 12 days!

I had told myself that if it came back with complex hyper. with atypia again, I would do the hyster. I was confident it woulden't. Now I am scared. I really don't want major surgery with a long recovery.

Doc says that we can treat aggressively with Megace (40mg 3xday) for 4 mos and follow up with another D&C and see what happens.....or.....Hysterectomy. If we did the first and it worked, he said I would have to be extremely diligent about after care and if there was ANY type of extra bleeding, I would be in for another D&C to see what was going on.

He also said that there was a 23% chance that this could grow into cancer and at my young age of 35, that is not a very good outlook.

I was so upset, I sat down on the stairs and just cried. I just don't know what to do....
  #10  
Unread 04-12-2004, 04:11 PM
hyperplasia still questionable...oh,no!

Joyce,

I think you owe it to yourself to at least TRY the Megace. Yes, there is like 30% chance it will turn into cancer WITHOUT treatment! But, not so with proper treatment! I was on Megace, 160 mg a day (40mg x4) for 3 months. Just had a biopsy today. I should hear back Friday on it, but Doc thinks the 3 months was probably good enough, and will let me on Prometrium next week, as it will still protect me, but is much milder.

Look at it this way.... if you get a hyst without trying the Megace, won't you always wonder "what if?" But, if you try the Megace, you will know you tried everything you could. (PLUS, there is a GREAT chance it will fix the hyperplasia).

GET this article my friend sent me, if you can. You can get it at a medical research library, or your doc might can get it. It's the October 2003 issue (volume 102, no.4) of Obstetrics and Gynecology magazine. Written by a guy named Gotlieb. Check it out... very encouraging, it tells of women who have been cured of endometrial cancer with Megace and provera!!!! The title is "Outcome of Fertilty-Sparing Treatment With Progestins in Young Patients with Endometrial Cancer". Now, you don't have cancer yet..... just PRE cancer.... If it works for cancer, it can definitely work for you!!!!

Don't give up till you give it your all! You can make it!!!! Your docs just haven't tried anything strong enough yet. You can take up to 320 mg of Megace, though that is a big dose. Most of us are on 160 mg. GET that article, and take it to your doc, or ask them to read it. If you want a copy, I can fax it to you. I just have a copy myself, but it should be readable enough. If you have a fax #, let me know.

Be encouraged! You can beat it!

Pam
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