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Old 07-19-2008, 06:30 AM   #1
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CIN 1 : Leep or Cone? What about cryo?

Hi All,

I'm so glad to find this board. Sorry so for the long post. I'm 35 and have had regular Paps every year since I was 19. I've never had anything other than a normal pap until last September when my new OB (last one left practice) told me my Pap was normal but my HPV test came back positive. I was floored. I had been engaged for 9 months, and had been in the relationship for almost 4 years. My doctor explained that there was no good way to know when I had been affected and that it could have been that long ago.

He recommended coming back in 6 months which I did, and the Pap came back HPV positive, and abnormal. Four months later at a repeat the HPV was still positive but now I was CIN I. According to my doctor changes don't normally move this fast and I had a coloposcopy done. I'm awaiting the results but according to my Dr. he thinks I will need a LEEP or a CONE. I'm married now and my husband and I had planned on trying to start a family next month! Now, that's on hold. I don't know what to do. I asked my doctor if he thought I could wait until having a baby to do something and he said "No, because right after having the baby you'd most likey die from cervical cancer". I know he meant from the fast progression. I was floored. I don't want to die but I can't imagine not being able to have a child. That would kill me in a different way.

He also told me that if I had to have a cone and they could put a stitch in the cervix to help support it but that a complication could be a "dead baby". I'm crying every night (and day!). From what I can read cryro seems like a better option, and would allow me to try and have a baby straight away but my current doctor flat out refuses to do it as he says there is no guarntee that all the abnormal cells are removed since nothing can be sent to the path lab.

I called the GYN onconology clinic at my local university hospital, and I have an appointment in about three weeks. I don't even have a primary to jelp me out. I'm always been healthy! From what I'm reading it does seem extreme (especially the cone) but why is it moving so fast...and the whole comment about being dead after 9 months (pregnancy) was so stressing. When my current doc calls about the results I'm going to ask for my records to take to the university.

If anyone has been in simiar situations I'd appreciate your thoughts!


So scared...

 
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Old 07-19-2008, 07:43 AM   #2
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Re: CIN 1 : Leep or Cone? What about cryo?

UNC, I suggest you do what you can go get a second opinion ASAP! Your doctor has no bedside manner! If it were me, I'd ask that gyn/onc if/when they have any cancellations to fit you in, otherwise wait the 3 weeks.

I'd suggest you get copies of your pathology reports and read them. Then learn what they say. What type of atypical cells do you have? What tests did they run? How many lesions?

It may not be that the cells are growing so rapidly. It may be that they are just discovering them in a manner that seems "rapid." Let me explain. A pap only screens for atypical cells. When the doctor scrapes the cervix for a pap, he/she doesn't always swab the entire exocervix nor does he/she always swab the same areas. So it is possible those atypical cells were there, just not sampled at previous paps. Secondly, I don't believe a pap can give CIN results. Did your doctor do another test? Maybe a colposcopy with a biopsy? Your pathology reports will help you better understand what the doctor has done.

Your story sounds a bit like mine. I had my first HPV test done at 44 and it came back positive for high risk HPV with clear paps. I've had regular paps every year since I was 19 and they've always turned out good. My husband and I have been together and faithful for 16 years.

When my doctor did the colposcopy there weren't any cells for her to biopsy. "Just to check" she scraped the endocervical canal (ECC - endocervical curettage). That was where she found my dysplasia.

The cervix is made up of 2 types of cells: squamous and glandular.

Squamous cells are on the lower part of the cervix. Glandular cells are in the upper part. I think of the cervix as if it were a frosted donut. The pap and colposcopy sample and look at the frosted part where the squamous cells are located. They can't see where the glandular cells are located, that's further in the "donut hole" where the frosting didn't reach. Most women who have had atypical paps have atypical squamous cells.

The way I understand it, atypical squamous cells grow to neighboring cells. Atypical glandular cells can skip over and grow here, there, wherever. Atypical squamous cells grow more slowly than atyp. glandular cells.

Yesterday, my doctor's Physcian Assistant said it is common for women with atypical glandular cells to never have a bad pap, even if getting regular exams.

I've read of some women having their child(ren?) even after getting a precancer diagnosis. The cervix must be watched carefully, though.

That's a lot of info and I'm not sure I've addressed your concerns. Basically, I want to say get a 2nd opinion, get copies of your pathology reports, and learn all you can. Knowledge IS power. And finally, check back in with us. Ask whatever questions you can think of. We'll do our best to answer them.

 
Old 07-19-2008, 08:33 AM   #3
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Re: CIN 1 : Leep or Cone? What about cryo?

First-get a new doctor! He/She is not God and cannot know when you will die. Cervical cancer used to kill lots of women but, thanks to screening, is almost totally preventable when detected early.

i agree with the previous post: pap smears can't diagnose CIN levels. What they can do is suggest that those levels of dysplasia might be present. You will know so much more about the dysplasia you have after the colpo. I have had one and, aside from all the emotional stuff going on, it is really no more painful and uncomfortable than a pap. It's always the waiting that sucks.

If you have CIN 1 dyslplasia, it's likely that you had it for some time. My doctor said, though, that as we age it becomes less likely that it will clear up on its own. You are 35-certainly not too old to have children!! It's good to keep a close eye on it, though.

I had a LEEP for CIN II dysplasia a year and a half ago. I went through all of the things you are going through now. It was effective, the margins are clear, and my HPV tests have been negative ever since. My husband and I just started trying to conceive last month, so will see how that goes! Anyway, none of this can affect your ability to get pregnant. If you have to have a lot of your cervix removed, your doctor can do a cerclage when you are pregnant to keep your cervix closed and prevent miscarriage. That's it. After LEEP, you can have sex in one month, so it shouldn't put your baby-making plans off by too much. Regarding the cervix, I have a new doctor who said she couldn't even tell that I had had anything done to my cervix, so there's no need to think that you cannot have a child.

I know that this is such an emotional time - I went through it, too. Try to remember: this is for cancer prevention and it should not affect your ability to have a child.
I hope this helps!!

 
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