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Unread 11-16-2003, 02:46 AM
What to do next

Hi all,

I am really enjoying the information I read on this site!

I am 40 years old and had my second irregular pap a couple of weeks ago. My first one was 2 years ago with ABCUS that did not show up on the following paps. This time it came back with HGSIL and was immediately called in for a colpo and ECC.

Nothing could be seen on the colpo, so biopsies were taken from the endocervical area and from the interior of the uterus. The uterine samples were clear, but the endocervical ones came back as severe dysplasia (which I understand is CIN 3 or CIS). (I was in the area, so I had stopped by to see if my results were in and knew there was a problem when the doctor wanted to speak to me about them.)

He was uncertain how he should proceed next as I guess that the location of my dysplasia is unusual (I read somewhere that it was less than 0.5% of paps and he said it was less than 5% of the irregular ones.) He is consulting with the doctors at the university, but thinks my options are cone biopsy or hysterectomy.

Unfortunately, in my failed marriage (going through a divorce right now) I never had the children that we were suppose to have (he changed his mind) and I do not see me starting a family in another 3-5 years from now. Because of this and because of the location of the dysplasia, I am thinking that a hysterectomy would be the better choice.

Anyone have any thoughts on the matter?

I should hear back from my doctor on Monday as he is moving right along with this (which gives me the impression that he is really concerned that this may be more serious.)

Also as another thought, two years ago my first pap came back with insufficient cells, so they redid it and were more aggressive about getting a sample. This second one came back irregular. I was put on Provera for 3 months (I had been spotting for months and having bladder problems with no sign of infection) and retested. This test was lost and so 6 months after the irregular pap, the follow up (pap #4) came up clear. The one 6 months after that was also clear. The one the following year was the CIN 3 pap. One thing I noticed was that the irregular paps came back when the person performing the pap was more aggressive in collecting the sample (and you ladies know that you can tell the difference) and wondered if the negative paps were due to the fact that the person performing the pap did not get cells from deep enough in my endocervical region. Just wondering.

Sorry for rambling so. It has been an interesting 10 days since my pap came back.

Any thoughts would be appreciated.

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Unread 11-16-2003, 08:34 AM
What to do next

Hi Linda..

My one question to you is...Is your gynocologist an oncologist gynocologist??? If not, please make an appointment to see one. They are definately the experts in all gynocological disorders and cancers and will set you onto the right track.

Keep us posted.
Unread 11-16-2003, 10:48 AM
What to do next

Hi Rosalie,

Thanks for the rapid reply. No he is not an oncologist which is why he is consulting with the docs at the university.

I have had other problems over the last two to three years including very low back pain (last six months), urinary problems (diagnosed with cystitis and had a growth in my bladder), itchiness at the base of my vaginal tract, the constant spotting I wrote of earlier, and unusual (for me) cramping and bladder problems particularly around the time of my period.

Much of these began the year preceeding my first abnormal pap. Originally I put these problems on the stress I was going through in my marriage, but now I wonder.
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Unread 11-17-2003, 08:21 PM
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The clinic called today and I have a pre-op appt with my gyno this Thursday. Sounds like they want to do a cone biopsy (under general). Things are moving right along. It's been since the 6th of this month that I found out that there was a problem.

Any advice would be helpful. I am considering discussing having a hysterectomy because I do not do well with generals and would rather have to go under the knife only once.

Opinions greatly and gratefully received.
Unread 11-18-2003, 09:39 AM
What to do next

A cone biopsy seems to be a pretty typical course of action. One, because sometimes that's all the treatment you need. Two, because it provides the docs with more information on what's going on in there. The more information you have, the better the decision you can make about what's most appropriate for you. Once you have the results, you might like to request a referral to go see a gynecologic oncologist. They really are the experts when it comes to female cancers and precancers, and they know the most current treatment and surgical techniques available.

I do want to make a comment about the itchiness you are experiencing at the base of your vaginal tract. You might want to consider asking your doctor to do a vinegar test with colposcopy of your vaginal wall. There's always the possibility that you could have abnormal cells growing there which are contributing to this. I had itchiness and a chronic tear at the lower end of my vagina, and when I had my LEEP, my doc went in to fix the tear. The biopsy from that showed carcinoma-in-situ, so when I had my TAH, they also resected more of my vaginal wall. Just a thought for you to consider.

Good luck on Thursday! Please let us know what you find out!

Unread 01-06-2004, 03:34 PM
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Finally had my post-op appt. I had read my results from my cone bx, and they looked good. Unfortunately, my doc said that it was because the cone could not go high enough. Had another "brush" specimen taken today and will have the results back in a week. His recommendation is a hyst since this is too difficult to monitor (but he will consult with the university too.)

What a day. No running water (day 2) due to freezing weather. Got 3 hours of sleep and took my 'roommate' to day surgery by 6:30, waited with her for an hour and told her I would pick her up after my dr appt, went home fed the horses, cleaned her woodstove and restarted it, arranged to get barrels for water, found a place to get water and got about 50 gallons (about 10:00), went to my post-op, found out that I will probably have a hyst, picked my 'roommate' up late (I had my appt at 10:30 so it was almost noon before I got out) and she was irate for having to wait while I was out doing things for me as she was ready to leave at 10 (so, no, I didn't tell her the good news of my post-op), siphoned water from the barrels to 5 individual horses and 1 bunch of 4 by driving through 8 inches of snow to each location, checked my mail and got a postcard from company that I had been interviewing with (3 interviews) telling me they were not interested in me. I am cold and yucky and messed up my jacket as the barrels originally contained strong bleach and some of the residue got on my jacket as I loaded them and rinsed them and filled them.

Now, how is that for a whine. Oh, yes, I am hungry too!

Thanks for letting me vent. I am really feeling dumpy, especially after I got yelled at and then found out that I was going to still be unemployed. I have another week before this pathology report comes back, so I won't worry about that until then.

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