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I need advice from the wonderful world of sisters! I need advice from the wonderful world of sisters!

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  #1  
Unread 08-06-2001, 11:33 AM
I need advice from the wonderful world of sisters!

I was recently diagnosed with severe dysplasia, CIN 3. I had the colp., procedure and then a cold-knife-cone biopsy. I was just told today that the "margins are clear" and my doctor will be calling me to discuss further treatment options. I am scheduled to see my doctor on 9-6 for a check up on my last surgery. My question is this - I have done a lot of web surfing and have read that quite often women who have cases similar to mine have been encouraged to go ahead with a hysterectomy, what are your experiences? I don't want to go on have small surgeries every year-endless biopsys and constant bleeding. My periods were just fine until I had the colp., and the ckc. I am 40 and have 3 sons and one 9mth old grandson so I won't mind the loss of certain female parts. also, why do some doctors recommend a hyster when a woman has this history? Is is a preventative measure? How bad is the scarring after constant biopsys?

Thanks for any advice you gals can give. Also-special thanks to Robyn, she had been a wonderful email friend.
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  #2  
Unread 08-06-2001, 11:45 AM
I need advice from the wonderful world of sisters!

Hi!!
I am so glad your cone came back with clear margins!! That means they got all the abnormal cells!!

I had CIN3,( carcinoma insitu) with the colposcopy biopsies, yet when she did the cone, it came back mild dysplasia. Who knows??
When I asked my doctor what I should do next, she said, we can monitor every 3 months, or you could have a hysterectomy. I asked her for her personal opinion...she said, you've had your babies, now you need to be sure your around to raise them. She said if it were her, she'd schedule an elective hysterectomy...which I did. I have 4 small children and my family is complete. I had a TVH on 7/16...it went very well and the pathology report came back with no residual cells left. YEA!!!
I saw her this AM for my post-op check. I will need to see her 2X a year with a colposcopy once a year, probably forever. This way if the abnormal cells come back, hopefully we can get them early and quickly get rid of them.

I think some drs. are more conservative with surgery than others, that is why some opt for hysterectomy and some don't.

I wish you luck in making your decisions...it's not easy. This site helped me tremendously!! This is my situation, and my opinions only!!

I agree, Robyn is the best!! She is so honest and open, yet kind and gentle and encouraging!! Thanks Robyn, for being here!!
  #3  
Unread 08-06-2001, 01:43 PM
I need advice from the wonderful world of sisters!

When I had my abnormal pap, the gyn mentioned cervical cancer and I knew right away that I wanted it out of me ASAP! My family was complete and there was no need to live in worry. Whatever you decide, this must be your decision because this is your body and you will have to live with whatever you choose to do. Listen to others and take in the info, but make sure that the decision is YOURS!! I wish you the very best of luck!!
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  #4  
Unread 08-06-2001, 01:45 PM
I need advice from the wonderful world of sisters!

Hi Marcya, great news about the margins being clear. This means that they removed all the abnormality.

Sometimes when a woman has finished her childbearing years and has continuous abnormal paps a doctor will suggest a hysterectomy . This is to prevent the continuous surgeries if the abnormalities keep occuring. But as we all know this is not always the answer, as in my case. (Although what happened to me only happens in a very small number of women). Scarring will occur with continous biopsies and I know of one hystersister whose Dr had trouble getting a reading on a pap because of it.

A hysterectomy as you know is major surgery . It will 'fix' the endless bleeding but it will not stop the yearly paps and colposcopies . If you have had any type of abnormality previously then you will have to be checked at least yearly for the rest of your life . Oh what a joy !!

The best thing for you to do is to read and ask us as many questions as you need to. There are quite a few of us here that have had severe dysplasia/CIN3 and we have all had various expriences with it. Write down concerns and questions to ask your Dr and then you will be able to make an informed decision.

Please remember that we are always here . Much love always x x

Also thankyou to both of you Marcya and transplant for you encouragement and praise. I am so happy that I have been able to help you both a little. x x
  #5  
Unread 08-06-2001, 03:48 PM
I need advice from the wonderful world of sisters!

Thank you ladies so much!
Thanks to you and this wonderful web site I have a nice list of questions for my doctor. I'm also going to get a second and possibly 3rd opinion. I am currently leaning towards the hyster.
I wonder though, if its considered elective-does ins cover? If not maybe my dr will "recommend" it as the next part of my treatment.
Again thanks for sharing your experiences. I have been telling every female I know about this web site.
  #6  
Unread 08-06-2001, 04:45 PM
I need advice from the wonderful world of sisters!

Hi, Marcya!

So glad to hear your path came back with clear margins. That is SUCH good news!

I had my first cone 15 years ago (for CIN3) and had no more problems for 10 years. Than I started having recurrences, and after a couple of cryosurgeries, several biopsies, and another LEEP the recommendations was the hysterectomy when it showed up again as carcinoma-in-situ. One of the biggest supporting factors for the TAH was that my cervix was so scarred from all the procedures that they had difficulty getting good samples for biopsy and PAP which left some confusing lab work to decipher. It's certainly a good conversation to have with your doc and then maybe another doc to be sure you are doing what's best for you. Good luck with your decision-making!

  #7  
Unread 08-06-2001, 09:24 PM
I need advice from the wonderful world of sisters!

Hi,

I was 44 when I was first dx'd with dysplasia. I had the colposcopy, then a Cone Biopsy. Then had the paps every 3 mo's for a while, graduated to every 6 months, then once a year. I was fine for 10 years and went through a normal menopause. Then I got another abnormal pap. Went through the colposcopy and Cone again. The next pap again showed abnormal, so the dr suggested a hyst.

So, it worked for me. The first time around my dr (GYN/ONC) wouldn't even entertain the thought of a hyst.
  #8  
Unread 08-07-2001, 09:18 AM
I need advice from the wonderful world of sisters!

I can relate to some of your story. I'm 31 and have severe dysplasia and am scheduled for a hyst in Oct. That's the short story. I too had many colps, the cold-knife cone biopsy and then 3 mo follow ups, but my pap still stayed abnormal. (6mo after the cone, my cervix was 80% covered w/ dysplasia) Now it is possibly in my uterus and spreading to my vaginal walls, so that is why my Dr. encouraged the Hyst. (Even though I wasn't done having kids). Because of the mean nature of my dysplasia we don't want to take any chances of it becoming cancer. That and the fact my mother also had this. I'm tired of the "little procedures" every few months and would like to enjoy the one son God gave me.
I hope whatever you choose, is right for you. Once the decision is made, it's just the waiting that is hard.

Good luck to you - and I'll pray your paps come back normal!
  #9  
Unread 08-09-2001, 11:40 AM
Most recent update

Hello Ladies,
I s/w the nurse yesterday and she stated the doctor will do a pap every 3 months for a year and if everythings okay will go to 2x's a year after that. I'm still not sure. What I have is pretty aggressive and it scares me to know what might happen. I'm afraid if it comes back that it will infect other areas. Right now its my cervix only. I do know one thing for certain, if I get another bad pap with cin3 I am opting for the hyster. I'm not going for colps and cone biopsys every year.

Thanks again. I am referring to this site daily for sustenance and wonderful advice.
Marcya
  #10  
Unread 08-09-2001, 02:19 PM
I need advice from the wonderful world of sisters!

Marcya, If you are not happy with what the nurse said, is there any way that you can make an appt. to discuss this with your DR? It is so important to put your mind at rest. Just , with my history of an aggressive strain I know how fast these things can move. I dont want to scare/panic you but really I would be discussing this before the 3 months is up. How about a 2nd opinion? Take care and much love to you x x
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