Hi. I a new here and I hope there is someone else out there that has the same dx as me. I also have the HPV virus.

I recently saw a ObGyn/onc. this past Wed for a second opinion and he showed me the pathology report and told me I had the CIN III along with AIS. For some reason or another my reg obgyn didn't tell me this. This is my story:

I got a call about an abnormal pap and was told that I had HPV and that I needed to go in to have a colpo and biopsy done. So when that came back the doctor told me that I had adenocarcinoma cells and that I needed to have a LEEP done.

I had the LEEP done and when those results came back she told me it was in situ and that I was 97% cured. When I went in for my 2 week check up after the LEEP she didn't tell me about the CIN III and that my dx was AIS. So when the OBGYN/ONC told me I wasn't cured I was a little suprised.

My reason behind seeing an OBGYN/ONC was to try to get a more decisive answer as to what I should do, either keep having exams and biopsies or do a hysterectomy. The ONC suggested to have another cone done due to the fact that the adenocarcinoma cells were not completely remove.

I am waiting for my reg OBGYN to call me regarding the ONC's notes but I haven't heard back yet.

Thank you for reading this and for any information you all may have. Rebecca

Hi Rebecca71 and welcome to the forum. You have come to the right place for advice and words of wisdom. I too, have a story very similiar to yours. I had my pap on March 23, got a call March 30, that I had abnormal cells (along with a high risk HPV) that they suspected as severe dysplasia or carcinoma in situ. I went in for a copolscopy on April 9th and on April 16th got the call that I had AIS. Needless to say, I was pretty much taken aback. I am scheduled for CKC (cold knife cone), ECC (endocervical cutterate) and D&C (dialation and cutterage) on May 10th. Studies about AIS have stated that there is a better chance of getting everything with a CKC than with a LEEP. In fact, my ob/gyn doesn't even do LEEPS when dealing with AIS. I'm hoping for the best case scenario that they can get it all out and preserve my fertility. Then I will just have to go for paps every 3 months to keep it in check and see if it returns. There are many ladies on this board who have AIS and have had similiar procedures done and have gone to have successful pregnancies later on. Then again, they are some who have opted to have the hysterectomy. Even with the hysterectomy, you can still get abnormal paps, that is why it is so important to keep up on them after treatment is done. Whichever you decide, my advice would be to be as informed as you possibly can before making any decision. Weigh the pros and cons and go with what you feel is right for you and with what your doctor can agree with as well. Me? I'm trying to get as much information as possible so that I'm as informed as I can before my surgery. And since we seem to be in the same boat, I'd like even more if we can kind of keep in touch with each other's journey through it all. (if you want! :) ) I know you will get other great posts from the ladies on here. Dont' be afraid to ask questions....they will get answered on here! Take care! Tori

Hi Tori, thank you for reply and I am glad I am not the only one in the same boat.

I think once I hear from my obgyn that I will ask her about the cold knife procedure and why she choose not to do it. I also have read that was the best way to take care of it. I am suprised that the OBgyn/onc didn't suggest that procedure.

I am all done have children as my husband has had a vasectomy so if I needed to have the hysterectomy then it would be okay. I hope you don't mind me asking, how old are you and do you have any children? Also, how come you are having so many procedures done on the 10th?

Rebecca

Rebecca...I don't mind you asking at all. I just turned 39 years old on 4/15...and have not had children. I didn't meet my current husband until I was 31 and didn't get married until I was 34...that is pretty much why we have no children....unless you count our 4 dogs!! :)

I am having all 3 procedures done at once because they all go together in order to treat and diagnose the AIS. The CKC gets the bulk of the affected area that they want to take out....the D&C scapes cells from the uterus to assure that they are no abnormal cells hanging out there and the the ECC (Endocervical curettage) is a type of biopsy that involves scraping cells from inside the endocervical canal with a small spoon-shaped tool called a curette. I may be mistaken, but I believe the ECC is done last. (correct me if I am wrong ladies) The ECC is usually done with a copolscopy as well...(at least my ob/gyn did one then) At any rate, most of the time, all 3 are done together. I hope that kind of help things make more sense...

If I can ask...how old are you? Had you been getting yearly normal paps and this came up? That was me...every year getting a pap and having it come back normal...and then this year...all this came up. I had no abnormal bleeding, no pain during intercourse, or any other risk factor that may have indicated that something was going on...it's just kinda crazy....

Take care,

Tori

I don't mind either....I am 35 until October and I had normal paps up until this past Feb. I did have some bleeding after intercourse and some discharge on other days but I thought it was only due to having a baby. I never had any problems until after I had my son and that was only in the past year, so I never questioned it. Just before my yearly I did have a back to back yeast infection but I had them every so often so I didn't question that either.

I do know that my doc took some biopsies when she did the LEEP but she didn't give me the medical names for them, so maybe she did do what you are going to have done. I guess I need to ask her more questions about the procedures she did. It does seem like you are very informed on what you are having done.

Can I ask you what you know about HPV? Like should my husband be using condoms or does it matter at this point?

Hope you have a great week! Rebecca

Rebecca...this is what I know about HPV....but I'm sure there is a lot more out there to learn about it...

As far as the HPV is concerned, it is a very common virus with over 100 strains. It's estimated that around 70 - 80% of women will have it sometime in their lives. Most strains can resolve themselves on their own because of your immune system. Some can not. Because it can remain dormant in your body (or your husband's) for years, it's hard to tell who gave it to who. Most people who have it, don't even have any symptoms unless they have the strain that causes warts. Warts can affect both the male and female. Sexual partners usually share HPV. If you have been together for a long time, it is likely that you already had HPV. The types of HPV that put a woman at risk for cervical abnormalities very rarely cause any health problems for heterosexual men. Condoms may provide some but not complete protection against HPV, since HPV can infect skin that is not covered by a condom. Other than that, there are no symptoms with either sex. There is now an HPV test for women, which can be used as part of whole cervical abnormality screening process. This test is not a general check for HPV, so people can not generally come off the street and ask to have it done....and it is not made to find HPV in men.

I have not been in touch with an gyn/onc here as there are none in the city I live in...but my ob/gyn has been very thorough, explained things in detail (even drew me pictures) and seems to be up to date on what the research is on HPV and what it can cause, but I'd been interested to hear more about what your gyn/onc says. I feel like the more I know, the better. Any idea when your cone is gonna be scheduled?

Please keep me updated if you can! Take care,
Tori

Tori: I don't know what order they're done in...I wasn't even told about mine until after the fact.

"The CKC gets the bulk of the affected area that they want to take out....the D&C scapes cells from the uterus to assure that they are no abnormal cells hanging out there and the the ECC (Endocervical curettage) is a type of biopsy that involves scraping cells from inside the endocervical canal with a small spoon-shaped tool called a curette. I may be mistaken, but I believe the ECC is done last. (correct me if I am wrong ladies) The ECC is usually done with a copolscopy as well...(at least my ob/gyn did one then) At any rate, most of the time, all 3 are done together. I hope that kind of help things make more sense..."

Hi Tori. Sorry I didn't respond earlier. It was a busy weekend.

I called my Ob/gyn office and they said they haven't received any notes from the onc's office yet. So I called the OBgyn/onc office and they said it would take up to a week for the notes to get transcribed and sent to my doctor. So I haven't heard anything yet. But when I do I will let you know!

Thank you for the information on HPV. Should I assume that since we have AIS that we have the worst strain of HPV? Do you know what number you have?

Rebecca:wave:

Rebecca...Happy May Day!

I hope the information I gave you helps. I'm not expert, but I've certainly been learning more and more each day.

Honestly, I don't know what number strain of HPV that I have. All I was told that it is "high risk".

I'm not sure if we do have the worst strain or not. I mean, I don't even know if there is more than one strain that can rear it's ugly head as AIS. That's actually a good question to ask the doctor.

Please keep us (and me!) up to date on things with you if you can. I'll do the same!

Take care,

Tori

Tori, Happy belated May day to you!

I will let you know what my doc says once I talk to her. Hopefully I will know something next week. Thank you again for everything!

You take care also!

Rebecca

Hello. Just wanted to say that I have decided to go with they vaginal hysterectomy. I am scheduled for June 19th.

When I finally talked to the nurse at the Dr's office, she read me the notes they received from the oncologist. He first recommended the hysterectomy (which was different from his personal opinion, which was a second cone). Then the nurse said my Dr read the notes and said it was still up to me what I wanted to do and that she was okay with whatever I decided.

So to me, I felt like I was still in the same situation as I was before I saw the oncologist. I felt lost. So I just decided to do the hysterectomy and hope that this will be the best thing. I hate to say that my Dr's are not helping but that is what it feels like. What can you really do?

Well, off for now.

Rebecca :rolleyes:

Rebecca...so glad to hear from you! I am glad that you have decided on a route to go. I can not imagine how frustrated you must be with not getting the information you may have wanted from your doctor's office. I'm sorry. I guess they just want you to make the decision based on what they have told you. If they supporting you either way you go, then that can be a good thing too.

I had my surgery on the 10th of May. As of today, I have not received any pathology results yet. I've been on an emotional roller coaster. I have my post surgery appointment on the 30th, so hopefully will have some results then.

Please keep me (us) up to date on your progress and your upcoming surgery. I continually keep you and all the ladies on the board in my thoughts and prayers.

Take care,
Tori