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New Here & Scared! New Here & Scared!

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  #1  
Unread 01-13-2003, 10:08 AM
New Here & Scared!

Hi All,

I know I might be getting ahead of myself, but I'm scared and I'd like to talk to someone with some experience! Here's my story:

I'm 25 yrs old and I was recently diagnosed with CIN3. I have had a colpo. and this is what my biopsy revealed. I am scheduled for a LEEP procedure in about 2 weeks. I have been married for a year & a half but my husband and I have not yet started our family, and although my fertility is obviously not my #1 concern, it definitely is a worry.

First of all, I'm wondering if anyone has an opinion on whether or not a LEEP procedure without a cone is aggressive enough to treat CIN3? And what are the chances that the LEEP procedure will solve my problem? I had a completely normal pap just last year, so I am surprised that things have changed as quickly as they have!

Should I be requesting to see an oncologist? I know that this is not considered cancer at this point, but being as young as I am, I want to attack this aggressively because more than anything, I want to live a long healthy life!!!

We live in Canada as well, and I am a bit discouraged by the lack of options in the healthcare field here. Is there anyone else reading in Canada?? How did you go about finding the best specialists possible? I want to make sure that the people treating me are the best in their field.

Sorry this is so long, but I'm trying to put on a brave face for my husband, parents, and sisters, and I don't think anyone knows how scared I truly am! I am not afraid to get the hysterectomy if that is the only way to treat my problem successfully, but I want to make the most informed decision possible.

Any other suggestions/tips to a rookie would be most appreciated.

Thanks for listening.....I really need to get all this off my chest.

Lisa
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  #2  
Unread 01-13-2003, 10:48 AM
New Here & Scared!

(((Lisa)))

I'm sorry you have to face this at your young age. I know how scary it is. I can't answer all your questions but will give you my experiences.

First though........yes, I think a Gyn/Oncologist is your best bet for treating a pre-cancer. I've never had a LEEP. I had two bouts with severe dysplasia (CIN3). The first was in '89 and I had a Cone and was OK for 10 years. I had a Cone the second time around but the next pap came back abnormal and we proceeded to the hyst. My guy was an oncologist.

We have some ladies here who are pretty knowledgeable and I'm sure they'll be along soon. In the meantime, I'm including a link that gives some information about some of the procedures done for CIN3 and cervical cancers.

Click Here

's
  #3  
Unread 01-13-2003, 01:29 PM
New Here & Scared!

s Lisa

I am so sorry you have to be worried about this at such a young age. I have no experience with your type problem. My main reason in responding to your post was to urge you to follow through with your thought of visiting a gyn oncologist. They are the experts in this area. A gyn oncologist will do everything they can to preserve your fertility along with your health.
Please let us know what you decide and how you make out.

karenann
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  #4  
Unread 01-13-2003, 02:29 PM
Re: New Here & Scared!

  Quote:
Originally posted by lisar202

I'm 25 yrs old and I was recently diagnosed with CIN3. I have had a colpo. and this is what my biopsy revealed. I am scheduled for a LEEP procedure in about 2 weeks. I have been married for a year & a half but my husband and I have not yet started our family, and although my fertility is obviously not my #1 concern, it definitely is a worry.

First of all, I'm wondering if anyone has an opinion on whether or not a LEEP procedure without a cone is aggressive enough to treat CIN3? And what are the chances that the LEEP procedure will solve my problem? I had a completely normal pap just last year, so I am surprised that things have changed as quickly as they have!

Should I be requesting to see an oncologist?
(((((((Lisa)))))))

I'm so sorry you have to go through all this mess, but take heart, you're in good company here. These ladies are GREAT!

I have been in a situation similar to your recently and am awaiting my first post-LEEP pap. I am 30 years old and my first bad pap (Aug '02) was Atypia, then I went back in three months and it was ASCUS. I was scheduled for a colpo and that revealed CIN III/CIS.

I did not seek the opinion of a GYN-ONCO, but everyone has this choice to make during their treatment. A (very knowledgable) GYN performed a LEEP on me 12/30/02. I got a call from him the next week telling me that the margins were clear on the LEEP pathology. That means the pathologist and the gyn think the LEEP got all of the dysplasia. Also, it looked, on the LEEP pathology, like the basement membrane was still intact!

If everything goes according to plan, I should get a NORMAL pap back in March. This is when my first pap is scheduled since the LEEP. I am hoping for a normal one.

I, like you, wanted the most conservative aggressive treatment done to rid myself of this. (if there is such a thing)
I didn't want to lose an unneccessary tissue, but wanted all of the dysplasia gone at the same time.

Unlike yourself, though, I am done having my family. One of the possiblities with LEEP is a stenotic cervix. This is where your cervical opening hardens and is smaller due to the scar tissue from the LEEP. It's not REALLY common, but common enough that it deserves mentioning here. Also, LEEP usually leaves more of your cervix than a CONE. My gyn wanted to leave as much *healthy* cervix as possible while still getting rid of the dysplasia.

In your case, if you are afraid of not being able to carry a child after the LEEP just know that if the doctors can put a stitch into your cervix (cervical cerclage) (sp) upon conception to help strengthen your cervix enough to carry a baby.

I'm sorry this post is so long, but I remember just how you felt and know you need answers. Time is our most valuable commodity, but please know that if you every need to talk.....My time is your time.....

Huge s to you, Lisa!

Paula
========
CIN III/CIS
LEEP 12/30/02
  #5  
Unread 01-13-2003, 03:34 PM
New Here & Scared!

Hi,
If you have squamous cells not adeno cells and your margins are clear-I have been told that the Leep should be OK. I would get your pathology report read by another pathologist just to make sure. Your gyn probably should have advised you to get rechecked in 3 months. You can go to a gyn/oncologist for an opinion. They are the experts.

I would not panic about your fertility at this point. I know people sho had CIN 3 and stage 1a squamous cell cancer who had children.
  #6  
Unread 01-13-2003, 06:41 PM
New Here & Scared!

(((Lisa)))

Welcome to Cancer Concerns !

Sometimes it's hard to put on that brave face, isn't it? I had my first abnormal PAP when I was 24--immediately following the birth of my first child. I was diagnosed with CIS and was treated with a cone biopsy. I then had normal PAPs for 10 years and added on to my family during that time. It did recur later, but the point is--I had 10 good years.

I was told that in 90% of women, the cone is all that is needed to successfully treat this condition. The cone is a little more aggressive and has a longer healing time than the LEEP. I don't know what the statistics are for the LEEP, but in 2001 when I had problems again, my doc felt quite comfortable doing a LEEP rather than a cone (and I asked 3 times, just to be sure). It certainly would be a good question to ask your doctor and/or gyn/onc. Gyn/onc's are at the top of their field--they know all the best treatments and procedures when female cancers and precancers are on the line.

Yes, unfortunately, sometimes these things pop up out of nowhere. Just before I had my hysterectomy, in August I had a normal PAP and then in December I had CIS. It was that quick--either that or it just wasn't picked up on my PAP. I felt kind of blindsided. It does happen.

Good luck, Lisa! Please let us know what you end up doing and then how your results turn out. We're here if you need us!

  #7  
Unread 01-14-2003, 07:34 AM
New Here & Scared!

{{{{{Lisa}}}}}}

I am so sorry that you have to be facing this medical nightmare and at such a young age.....First off I would say if at all possible make sure you are seen by a gyn/oncologist, as they are the experts. My gyn was recommending a hysterectomy and the gyn/oncologist said No! I am done with baby making but with absolutely no other problems I was not embracing the idea of a hysterectomy if I did not need one. As you probably know a leep can be completely curative for CIN III and I have heard of many women going on to have children after a leep and cone. As far as others from Canada, go to the bottom of these pages to Forum Jump....scroll on down and you will see links to posters by locations....Hopefully one of these ladies can help lead you in the right direction in your pursuit for the right doctor there in Canada...I wish you the best...Please let us know what you decide and how things go for you.

Hugs and prayers,
Carol
  #8  
Unread 01-17-2003, 03:03 PM
New Here & Scared!

Lisa,
I just wanted to reach out to you because I know how you're feeling. I was 29 when I found out that I did have endometrial cancer--it was the most horrifying experience of my life. I had never felt so alone and scared. My advice to you is this, don't always feel you have to put on a brave face, you're very afraid and have every right to be! Let your family be there for you and allow them to take some of your fear. I honestly don't know what I would have done without my family, they were my biggest support. I think sometimes as women we feel we need to be the ones keeping everyone else together but I realized that I, in the situation I was in, just couldn't do it anymore, I had to let go and let everyone help me. Keep us posted and just remember that we are all here for you. Good luck! 's Paula
  #9  
Unread 01-18-2003, 05:48 PM
New Here & Scared!

Lisa,
I'm sorry that you are having this problem. Hopefully the LEEP will solve your medical problem. But if it is not successful, my advice to you is to go see a cancer OBGYN. There are fertility saving procedures that may be available to you. I am actually pursuing some of these options.

I know that there is a Dr. in Ontario that is performing a procedure called a trachelectomy. This preserves your fertility and I believe he has had reasonable success. Some of the ladies on this board have had this procedure. Hopefully you won't need it but I strongly urge you to get a 2nd opinion if you are told that a hysterectomy is your option. Good luck. Jill Sue
  #10  
Unread 01-29-2003, 07:39 PM
New Here & Scared!

Hello I'm sorry to hear that you have to go through this at your age. I'm 28 and had biopsys and a leap procedure and now I'm scheduled for surgery for TVH January 30, 2003. I hope everything works out for you. If I was you I would get refered to a specialist if possible. Good Luck to you GodBless.
Ronnie
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