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Complex Hyperplasia w Atypia New Here Complex Hyperplasia w Atypia New Here

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  #1  
Unread 12-14-2003, 06:05 PM
Complex Hyperplasia w Atypia New Here

Hi! This is my first post.

Had annual pap in October which showed some endometril something, so dr scheduled ultrasound and endometrial biopsy which I had a week & half ago. During the procedure, she found two uterine polyps. Dr's office was to schedule hysteroscopy? /D&C.

Dr. called this week & said pathology report indicated complex hyperplasia and "very atypical cells." She (gyn mid-life specialist) consulted with gyn/onc who suggests I have hysterectomy. I am seeing the specialist tomorrow & have written down lots of qustions.

I told my dr. that my busiest time at work was between January and March & shed said I should not wait until March. I'll ask specialist tomorrow. He is holding a surgery time this Wednesday for me. Yikes! I don't think I'm ready.

I would like AT LEAST a second biopsy. What do my hyster-sisters recommend? Is it hard to get a primary care doc (gyn is primary care gyn) to recommend. I'm afraid that all this will take waaaay too much time.

I realize that 30% of cases progress to cancer, but that means 70% do not. Any advice would be greatly appreciated!

Researching the web here in Virginia, and am very glad that this forum exists.

A new sister, Carole
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  #2  
Unread 12-14-2003, 09:32 PM
Complex Hyperplasia w Atypia New Here

((((((HUGS!!!!)))))) and Yick! This Wed. right before Christmas! Oh my that is fast. I would if I were you find at least a second Dr to talk to and look things over. I know I am going to look for a second Dr to see. But the cancer chance is scarry. I would ask for at second biopsy. Do ask lost of questions of the specialist. I hope you find out the information you want to know and if you do not you will look for another Dr. I know other ladies here can help you even more than I can because I am new here. But I do know that there are lots of great and helpful links on this site. Good luck! Keep us posted.
  #3  
Unread 12-15-2003, 10:10 AM
Complex Hyperplasia w Atypia New Here

(((Carole))):

This must really feel like it's blindsiding you! I'm glad you're seeing the GYN-oncologist; they really are the specialists in female reproductive cancers. However, please don't feel that you're being pressured into an immediate surgery date, especially with hyperplasia. Yes, it may lead to endometrial cancer, and you may still need the surgery, but to do it in less than 96 hours -- during the holiday season -- strikes me as a bit precipitous. Most of us at least need enough time for a good general check-up, and usually there's a one-to-two day bowel prep involved. Trying to accomplish all this in a two-day period is really pressuring you, and isn't the best thing for truly preparing yourself, your household/work life, and your mind and spirit.

I suggest you go visit the wonderful ladies over in Cancer Concerns. There are a number of endometrial cancer ladies who've done their homework who might be able to tell you about the experience from the cancer point of view (which I realize your situation isn't yet). Since your doctor is worried about even waiting three months, see what the oncologist has to say about it -- and make sure that your surgery, in the end, is done by an oncologist. It can make all the difference in the world when it comes to your ultimate outcome!

Good luck with all this. You must really feel like the rug is slipping out from under your feet. Please, though -- take the time that you need to make ALL your decisions calmly and thoughtfully. If it takes a third opinion, so be it -- I wound up with four or five opinions before my surgery occurred. I waited three weeks for a surgery that looked like it was for advanced ovarian CA (it wasn't, just a whopping case of endometriosis with a giant and ugly cyst). Believe me, I was in a hurry to find out and get rid of that mass! But it took that time to get my body really in shape to have the surgery, and that was the important thing.

Let us know how the appointment works out for you, OK?



Audrey
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  #4  
Unread 12-15-2003, 02:08 PM
Complex Hyperplasia w Atypia New Here

Dear Carol,

I think that's terribly quick to arrange major surgery for someone that is unfamiliar w/the situation.

First off, I had low-grade endometrial cancer (which you know is far past hyperplasia) and progestins got rid of it. I am here on this medical forum because I get so afraid that people wont be informed of the choices they have. I know I wasnt informed by my oby/gyn.

Women's choices tend to revolve around a number of factors.. for example, if they've had children, how much pain they are in etc. I am glad you are seeing a gynecological oncologist. I chat w/another Sister on this site that has chosen to do progestins even though she has had her children.

During my past year, I've begun to see cancer as a metabolic process vs. just a thing to be cut out.

To read my story, click the www button to the left of this message.

Progestins (the synthetic form of progesterones) have worked wonders for me. I had no noticeable bad side effects from taking the progestins. Of course.. I know those were my reactions and I know other women have different reactions.
Sometimes a Mirena IUD can be used in cases of hyperplasia. I have one as a followup to my own situation.
The Mirena contains progestins which can stop or cut down on menstrual bleeding. What makes it particularly good for some women is that the progestin dosage is smaller and more direct and therefore it has less side effects.

As far as the polyps go, I understand they tend to typically be slow-growing and may be removable.
  #5  
Unread 12-15-2003, 02:48 PM
Complex Hyperplasia w Atypia New Here

Thanks for your responses and advice.

I went to the gyn/oncologist today and really, really liked him. He's very good and has a great bedside manner.

He gave me various options and I opted to take the progestin (sp?) for six weeks and then go back for another ultrasound and end. biopsy.

The drug he gave is Megestrol AC, 40 mg. There's a chance that this will help, but if not, we'll re-evaluate and possibly go for a hysterectomy - either vaginally or abdominally.

The early date for surgery that they were holding was due to the gyn trying to accommodate my work schedule. Now that I have the 6 weeks on Megestrol, and then perhaps two weeks more if the surgery has to be scheduled, I feel much better. At least I have a chance to educate myself and find a potential temp for my job.

This webside is GREAT!

Again, many, many thanks.

Carole in VA
  #6  
Unread 12-17-2003, 08:15 AM
Complex Hyperplasia w Atypia New Here

Dear Carole,

You are so welcome

I hesistated to say it, but I kind of think that 6 weeks on the progestins may or may not be enough time to show improvement.
It seems a bit short to me. Input anyone?

Pat
  #7  
Unread 12-17-2003, 09:47 AM
p.s.

p.s. Carole,

I created a poll about progestin response time in The Polling Place in your honor. The moderator decided however to switch it to The Hormone Jungle.

I imagine it will still get answer there
  #8  
Unread 12-17-2003, 10:34 AM
Complex Hyperplasia w Atypia New Here

OK.. I've just been informed that the post was switched over to Cancer Concerns. I hope it sits still there! lol
  #9  
Unread 12-17-2003, 09:51 PM
Looking for Survey

I went to Cancer Concers and The Hormone Jungle, but don't see the survey.

I don't mind going back to the gyn/onc after 6 weeks for another endom. biopsy & ultrasound - at least if this one comes back showing atypical cells, I'll be more conviced that the pathology report is mine : -)

This is 3rd day on the megestrol and no adverse symptoms. I feel a little bit light-headed for short periods, but it's not enough to bother me.

Thanks for all the advice...keep it coming...

Carole
  #10  
Unread 12-23-2003, 04:37 PM
(I gave Carole the website link about the poll, but nobody is answering)

Dear Carole,

Since I went to see an oby/gyn today, I asked her about how quickly to retest if progestins clear hyperplasia.

Upon reviewing the postings, I realized that you haven't had a d&c.. and now I'm wondering if this is what you meant by the scheduled surgery. I had gotten somewhat panicked... though I suspect you still meant that they wanted to do the hysterectomy that quickly.

I've just been chatting w/a lady about d&c's. Though I have seen a Canadian website touting that biopsies are as good as a d&c, they didnt explain their method and I had great doubts in them, so I tried to contact them to tell them I thought it was phooey... but this stems from a personal experience where the doctor only did a pinch biopsy for me 10 years ago and let me be on my way.. only to end up w/endometrial cancer years later. Now I see that catheter biopsies have gained popularity and I imagine that is what they typically use.

As far as I know, d&c is still the "gold standard" for testing, and I feel it is the next thing for you to do asap vs. the biopsy. That of course is my opinion and I welcome contrary ones. We need to make sure that the atypical cells are the worst of your problems.

I know when I got my first report of precancer I was literally floored and had a tough time believing it.. I was 31 and cancer from nonexternal causes didnt exist in any of my known family... but it was true.

We are having quite the chat on d&c's in the Cancer Concerns zone, you might want to check it.

Anyways, in a known case of hyperplasia, the doctor I spoke to would do a recheck in 90 days.

Please forgive my previous oversight.

Pat
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