CIN 3, Cervical Dysplasia treatment questions after LEEP

Hello Everyone,

I have been searching the web for what seems like forever to find answers to the questions I have. It seems the only way is to get advice from those who are going through it or have been though it, so here I am.

I am a little worried and not sure exactly what it is I want to know but hopefully in writing this I will figure it out and with all your help know a little more than I do now.

 When I was 16 I had a few abnormal pap tests, not HPV related and it went away all on it's own. Fast forward 13 years. I had not had a pap test since the birth of my son 7 years ago, big mistake. Turns out it came back abnormal showing severe dysplsia.  I had a colposcopy done and she took 7 tissue samples. The results came back I had CIN 2 and 3 on the surface of my cervix. It is now HPV related, I am not sure which since I did not have the HPV test done. I had a LEEP done a month ago. She called about a week after I had it done saying the results were not good. It showed I have abnormal cells deeper than they thought. It showed CIN 2 and 3 on the surface and possibly 1 or 2 deeper although they will not know for sure until they do a ECC.

Over the phone when they told me I asked some questions only to be told I needed to wait and talk with the doctor. I tried waiting and after a week called again. She answered some of my questions but then again told me I would have to wait, the doctor must talk with me in person. My appointment is Thursday this week.

 One of the things I am confused about it they want to wait 6 months to do the ECC as not to damage my cervix anymore before it heals. This seems like a long time to wait, although I really don't have much when it comes to paitence. :) What I can't seem to find out is what are the treatment options if it is deeper? What does that mean?

I have 2 children now, 9 and 7 they are beautiful wonderful children and I thank god for them everyday. I was widowed at 23 and thought that maybe I would marry again and possibly have more children. I still had this thought in my head when I went in to have the LEEP done. The more and more I think about it, I would rather be here for the children I do have than not because  I decided to wait in case I may someday want more. My doctor has asked if I want more and I told her I would like the possibility there. I talked with a nurse at the local health department and she said  my cells are cad enought they would do a hysterectomy with no questions asked.

If it is deeper how bad is that? I guess what I am trying to decide now is should I wait to have the hysterectomy or go ahead and have it done now. I have cancer in my family and would be devistated if it turns to invasive cancer. If it is deeper does that mean it is already invasive cancer?

 I am sorry this is so jumpy I am confused lol I hope you can get where I am going and that someone here has some advice. I am probably going to think of more to say after I post this but here goes anyway.

 Thanks to everyone who reads this and thank you for any advice you can offer :)

Christina

Did your doctor not do an ECC during the colposcopy when the biopsies from the ectocervix were done? If no, please get a different doctor, immediately. I also don't like the way the nurse's scare tactics. The doctor should have gotten on the phone and spoken to you about your results. For the nurse to say something like that to you and then tell you to wait until the appointment is unacceptable.

In addition, get copies of your lab reports so that you can see what has been happening all along. I'm concerned your doctor has not been educating you very well and that you may have needed to go to a GYN/ONC, who would more than likely do cold knife cone biopsy to more accurately diagnosis and, hopefully, treat you.

When you look at the lab report, check to see if there is anything mentioned by the pathologist about dysplasia in the endocervical canal or the endocervical glands. In addition, if you do need a much more invasive surgery, see if you qualify for trachelectomy. It removes the cervix but leaves the uterus intact for fertility purposes.

On 3/24/2009 herenow wrote:

Did your doctor not do an ECC during the colposcopy when the biopsies from the ectocervix were done? If no, please get a different doctor, immediately. I also don't like the way the nurse's scare tactics. The doctor should have gotten on the phone and spoken to you about your results. For the nurse to say something like that to you and then tell you to wait until the appointment is unacceptable.

In addition, get copies of your lab reports so that you can see what has been happening all along. I'm concerned your doctor has not been educating you very well and that you may have needed to go to a GYN/ONC, who would more than likely do cold knife cone biopsy to more accurately diagnosis and, hopefully, treat you.

When you look at the lab report, check to see if there is anything mentioned by the pathologist about dysplasia in the endocervical canal or the endocervical glands. In addition, if you do need a much more invasive surgery, see if you qualify for trachelectomy. It removes the cervix but leaves the uterus intact for fertility purposes.

I would also include the HPV test on the tissue removed. Some forms of the virus (type 16, 18, 32 and 33) are directly related to cancer. Other types of the virus are not and likely to regress on their own. I agree with the person who responded before me....get yourself to an OB/GYN who has the time to talk to you directly about your test results....not the nurse practitioner.

Hello,

Thanks so much for the reply. I called my doctor today and let them know when I am there tomorrow I want to take home copies of my labs so I know what they say. She has not been very open about what is going on.

 I do feel I need to see another doctor. I looked into a GYN/ONC but unfortunatly there is not one anywhere near where I live, 6 or 7 hours being the closest.

I am going to ask her tomorrow about the surgery you mentioned. I have heard of it before (online) and would like to know more. I am going to ask her some questions tomorrow and also let her know how unhappy I am with the way this has gone and if things are not changed I will be seeing another doctor. I am not ready to go that route quite yet since a better doctor would be about 2.5 hours away.

 Thanks again:)

On 3/24/2009 herenow wrote:

Did your doctor not do an ECC during the colposcopy when the biopsies from the ectocervix were done?

I forgot to answer this part:)

 No she did not do an ECC during my colposcopy. I did not hear anything about that until after my LEEP was done and my margins were not clear. Now that I have read about it, I agree it should have been done during my colposcopy. The only reason I can think of for her not doing it was maybe she thought it was not that far yet, but the biopsies told her I had CIN III so I think that should have been a flag telling her to do an ECC.

Please fire your doctor and get a new one, immediately. She should have done an ECC, at the same time she did the biopsy.

I understand how inconvenient it is to go a lengthy distance to see a different doctor. My doctors is two hours away, by public transportation. But my case was so horribly botched, the distance no longer mattered. I just wanted a competent doctor, who was more interested in helping me get well than covering up for the other doctor.

I recently tried to find somebody closer to home, who would work in conjunction with my doctor. Unfortunately, I later learned her clinic works in partnership with both the teaching hospital and the hospital where the ex-doctor is associated. Either she knew him or saw he was within her network. But she obviously had a conversation with somebody before I arrived. Without introducing herself and before she had closed the door, she began shouting at me about my case. Bear in mind I hadn't even told her what happened, yet. I never had a chance to. Her behavior was worse than unprofessional. It was flat-out hostile. Obviously, I won't go back.

Honeybee,

 You and I sound like we are in such similar boats, I can completely sympathize with what you are going through as far as the not knowing and the waiting etc.  I too had a couple colpos, biopsies and a LEEP...My doctor told me to wait 4 months for the same reason which was damage to the cervix due to all the procedures.  I have CIN3/CIS in my endocervical area and CIN2-3 in my exocervical area.  I have been doing a lot of research on docs in my area who are specialists like Herenow suggests onco/gyne...and I also prefer a woman doctor for these thing.  It has been an arduous task but I have picked a few in my insurance plan and will be taking them to my second opinion appointment.

Now I have a second opinion with a gyne in a little less than a week and it has been a little more than a month since I had my LEEP (also with unclear margins) and I am looking for someone to be direct with me.  Your doctor and my doctor sound like they have offered/not offered the same information....I also have gone back for post-surgical bleeding issues 3 times since the LEEP and frankly, I felt like I was in a clown-car parade even though I have always liked this doctor.  My friends have told me no one else's feelings etc are more important than your health.  And I think Herenow is totally right in suggesting the travel even if it is 6 hours (!)...perhaps another doctor's opinion in the matter may yield a surprise or two in referrals to someone closer you may have missed in your search? 

 I also think since we are in such similar stages at the same time that it would be great to keep up some sort of communication and check in with each other and share information with one another if for no other reason than for support.  I would be open to a dialogue with you and if you would like, feel free to contact me and we can share here and/or via e-mail? 

 Good luck and I know KNOW how hard this is to face especially with how it affects the mind with the not knowing and what will happen next.  I really hope everything works out for you and you are in my thoughts.

Hello ladies....

 I am ALSO in your boat.  I have had abnormal paps since the beginning of my junior year of high school.  I was diagnosed with HPV 2 years ago.  I am now 24.  The past 2 years have consisted of ROUTINE paps, biopsies and now a leep which I had done on March 31st.  Came back CIN3.  Which really scares me.  I already have 2 kids and would feel content with having NO MORE.  Is it ok to ask for a hysterectomy.  I really dont want to battle this anymore.....