2 Leeps W/ Pos Margins - Need Help W/ Treatment

11/2007 - I had a pap smear with results of: Epithelial Cell Abnormality Squamous Cell - Low grade squamous intraepithelial lesion.  Cellular changes of HPV.

12/2007 - I had a colposcopy with results of: Cervix Biopsy (12 o'clock) - Severe Dysplasia (CIN-3; HSIL); Cervix Biopsy (4 o'clock) - Severe Dysplasia (CIN-3; HSIL); Endocervical Curretage - Detached fragments of squamous epithelium with mild dysplasia and/or HPV cytopathic effect (LSIL) and unremarkable endocervical tissue.

2/2008 - LEEP procedure.  Pathology showed positive margins.

3/2008 - LEEP procedure.  Pathology showed positive margins again.

I have not seen either pathology report from the LEEP procedures.  I have an appt on Thursday to discuss further treatment options with my MD.  Before my 2nd LEEP, my Ob/Gyn indicated that a Cone Biopsy would be the next step if the 2nd LEEP still showed positive margins.  I am 36, recently divorced with no children.  I would certainly like to have a child someday if I met the right man, but being recently divorced and about to turn 37, I realize that motherhood may not be in the cards for me.  I am more freaked out by the thought of removing some of my female "parts" with a hysterectomy than the thought of not being able to have children.  I am now realizing that even with a Cone Biopsy, you can still have positive margins and not be "cured".  And I do realize that a Cone Biopsy can result in cervical incompetence/stenosis.

What are the questions that I really need to ask at my appt on Thursday to make an informed decision about treatment?  Is it too soon to resort to a hysterectomy?  I am terrified of some of the potential risks of a hysterectomy such as vaginal vault prolapse.  There are people telling me to just go ahead with the hysterectomy to be safe because the dysplasia is so advanced, but that is much easier said than done.  I can't get past this feeling that I will be less "female" after a hysterectomy.  : (

Help!     

Michelle                                                                                               

I tend to ask three questions, but you already answered the first question, so I"ll ask it in a different way.

1. Why didn't your doctor show you the lab reports from the LEEP specimens?

2. Did your doctor tell you if the endocervical glands were involved? Did your doctor even do a second biopsy before the second LEEP? And has your doctor taken a second biopsy since the second LEEP, along with an ECC?

3. Did your doctor discuss the risks and benefits of all your options before making a recommendation? Did your doctor just do LEEP, or did your doctor do LEEP/cone? If your doctor has mentioned a cone biopsy, has he discussed cold knife conization, laser conization or LEEP conization, along with the pros and cons?

Depending how you answer those questions, you may need to fire that doctor and get a new doctor. Regardless, at least get a second opinion. Something about what you posted doesn't sound right. It is critical for you to know exactly what has been happening. That way, your decision will be very informed.

I don't know why he didn't share the pathology reports from the LEEP with me, and I naively didn't ask. I am getting copies at my appt tomorrow. I'm not sure if he performed a LEEP/Biopsy or just a LEEP. He only called it a LEEP. He did send specimens to pathology both times. He mentioned doing the cold-knife cone biopsy and he did briefly discuss associated risks. I have another consult appt tomorrow to further discuss treatment. There was no colposcopy done btwn LEEPs. I just assumed the specimen sent to pathology after each procedure was similar to the specimen collected during the colposcopy. He did not mention involvement of the endocervical glands. That is at the top of my list of questions for tomorrow. My understanding is that gland involvement is more aggressive and should be treated similarly?

If the endocervical glands are involved, he needs to send you to an ONC/specialist for further diagnosis. I definitely don't want you frightened by the sound of that because I know too well how scary it is to face cervical dysplasia. I just want your life protected. But get a copy of each of your lab reports and go over them.

I'm surprised he didn't do biopsies/ECC's in between LEEP's. I'm also curious why he didn't address the abnormal tissue in your endocervical canal at the time of the LEEP's.

Definitely fire him and get somebody else. I'm serious about this. At the very least, get a second opinion before you do anything. It is critical for you to have all the information in order to make an informed decision.

"I'm surprised he didn't do biopsies/ECC's in between LEEP's. I'm also curious why he didn't address the abnormal tissue in your endocervical canal at the time of the LEEP's."

 Just so I understand correctly and am on my toes for tomorrow:

*What is an ECC?  Aren't the specimens collected during the LEEP and sent to pathology for analysis the same thing as a Biopsy?  What is the difference in the data?

*What do you mean by "address the abnormal tissue in my endocervical canal?  Talk to me about it or actually atempt to remove those cells as well?

THANK YOU so much for your replies!  : )

An ECC is an endocervical cutterage. It's a biopsy specimen to make sure nothing is in the endocervical canal. From what your doctor posted, one was done during the biopsy before the first LEEP.

If a patient has positive margins after a LEEP, the next course of action depends on what is involved, which should have been discussed with you. But your doctor should have told you want kind of positive margins you had, and if the endocervical canal was involved, he should have had you diagnosed further. I'm curious to know when he did the second LEEP and why he didn't give you a more detailed discussion. His entire approch sounds fuzzy.

If there is dysplasia in the endocervical canal, a cone biopsy is done to remove it. I asked if he had done LEEP/cone because a "top hat" can be done as a second pass to remove abnormal tissue in the endocervical canal. Again, your doctor should have told you this. That's why he should be fired.

Is there anyone who can go with you to the appointment? It's awful enough to address this, but it helps so much more if somebody else is with you.