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overreacting? overreacting?

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Unread 03-06-2003, 12:03 PM

Doc's office called yesterday. It looks like they were able to remove all of the dysplasia. The pathology indicates that I had a clean margin of healthy cells, and there was so indication of invasive cancer. It's a relief, to say the least.

I still plan to keep my appointment with the gynecologist/oncologist later this month. If this returns, I have little recourse for treatment. With a large section of cervix gone, the chances of recurrence happening deeper into the cervical os isn't something I want to ignore. On the treatment checklist, a cone biopsy is one step above hysterectomy, and cone biopsies can only be done once. The result of having this cone biopsy already means that I'll probably never be able to carry a child again. The risks of incompetent cervix resulting in pre-term labor/miscarriage are too great. This shouldn't bother be so much, but it does. I can't carry a baby anymore anyway, without serious hormonal intervention due to my PCOS.

I can't help but just look at my cervix as a useless cancer-magnet, and I'm better off without it. This might not return for several years yet, but if it does, I might have to have the hysterectomy, but I also might get blessed with the possibility of chemo and/or radiation. I think I finally understand women who undergo preventative surgeries when cancer is known to run in their families. There's a side of me that feels like you don't fix something that's not broken. But there's another part of me that sees the benefits of peace-of-mind.

Am I overreacting here?
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Unread 03-06-2003, 12:34 PM

Lady Avalon,

You are the only one who can decide what is best for you and your health, so I don't think that you are overreacting. It seems like you are carefully weighing the options and that's important, esp. since a hysterectomy is a such a serious surgery. I hope you can have a good discussion with the gyn/oncologist about some of these issues, and make sure that you don't leave the office until you feel your questions have been answered. I've written questions down for the doctor because when I get there I forget or the Dr. has to rush out or something.

Also, FYI, I actually have had 2 cone biopsies (one in 2000 and one in 2002), so you can have more than one, but your point about the dysplasia being further up in the cervical os is a very compelling one and an additional thing to consider. Good luck with your appointment.

Unread 03-06-2003, 12:45 PM

No, I don't think you're overreacting either. I think it's great that you are going to consult with the Gyn/Onc.

I also had two Cones.... 10 yrs apart. I had clear margins on the second one and the dr felt it would take care of it but the pap done 3 mo later was abnormal so we went for the hyst.

Congrats on your "clear margins" path report! That is wonderful.

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Unread 03-06-2003, 01:25 PM

I didn't think they like to repeat cones. Do they just take a deeper wedge? Yikes.

For those of you who had this, how far across the surface did the dysplasia spread? Did it cover the surface completely? I had a 2cm splotch in the center with a highly concentrated corner where they took the punch biopsy (CIN-III), but I also had CIN-II in the os. The cone removed the whole splotch.

My mind keeps playing tricks on me suggesting that there's less surface area to spread across now, causing a greater chance for invasion. Maybe I'm just borrowing trouble though.
Unread 03-06-2003, 07:46 PM


I'm so happy that your pathology came back with clear margins! That is wonderful news! At the same time, though, it's also difficult news because now there is no clear course of action. Had your margins not been clear, your choice of what to do would have been so much more obvious.

I had a cone in April 1987. My doctor recommended that I not get pregnant for at least 6 months to allow for healing time and to improve my chances of a stronger cervix to deal with a pregnancy. Well, as it turned out, I called my doctor in July to inform him that I was pregnant. I went in for weekly visits starting at 10 weeks so that if I started to dilate early we would improve my chances of catching it early enough to do a circlage to keep the cervix closed for the duration of the pregnancy. Well, I carried to term. And lots of women do. Yes, the risk is greater, but it's not overwhelmingly greater. A few years later, I had a couple of cryotherapies, and then a LEEP in 2001. Finally, the TAH in February 2001. Even then, it wasn't an easy decision to make. I'm glad that I took the course I did, but that doesn't mean that what I chose for me would be the right choice for someone else.

Please remember that in 90% of women, the cone is all the treatment that is necessary. So that is a possibility for you. If (after you talk to the gyn/onc) you decide to NOT have the hysterectomy, help yourself out by taking good care of yourself. Eat well, exercise, take a good multivitamin (ask your doctor if folic acid may be right for you), and pray or meditate. These things can help boost your immune system and may help you fight off these bad cells.

Even if you opt for the surgery, remember that follow-up appointments are critical. Dysplasia can recur on the vaginal wall (though this is rare), so PAP's are a necessity so that it can be caught early!

Good luck! Let us know how your gyn/onc visit goes!

Unread 03-06-2003, 08:41 PM

In response to your question about how much it covered, I had CIS. My entire cervix was covered with it and up into the cervical canal. The doc took the punch biopsies at 12, 3, 6, and 9 oclock positions on my cervix, and 2 samples from inside my cervical canal. I had a laser cone done in December of 2002, not as a treatment though. My doc had already told me at that point that we would be doing a hysterectomy about a month after the laser cone. The laser cone for me was just to make sure that the CIS had not become invasive cancer, particularly up in the canal where they could not get as good of a sample during the colposcopy. I had my hysterectomy in January. As I am sure we all know, even after a hysterectomy, there are still frequent paps required.
At this point my doc is saying that I will have paps every three months for two years and then every six months for the rest of my life. So, I guess what I am trying to say, is that the hysterectomy alone is not enough to guarantee that you will not get the cancer. I know how freaked out you must be by all of this, I can remember when I first heard!! I was a basket case.

As far as pregnancy after laser cone, I have heard that the cervix can be compromised from this procedure. But I do know that there are things that can be done to help. I have heard of stitching, and such that would assist in this area. It is a difficult decision, as far as a hysterectomy. I am only twenty six, but I am done having children.....(I mean, I was even before the hyster!!) So this made my decision much easier. I did not go in asking for one, my doc recommended it, and it made it easier for me to agree to it. I do not have CIS anymore, I am scheduled for my follow up pap, and I feel better. So, all in all, it was best for me. I guess that is the main thing, make sure it is what is best for you.
Unread 03-07-2003, 07:13 PM

You are not overreating!
Go with your gut instincts, I think you made your decision but like, me you, you keep mulling it over.
My doctor assured me that he removed everything with the cone and it was non-invasive. I insisted on the hyster anyway. (It was my gut feeling) After surgery, my pathology came back still showing CIS and also adenocarcinoma which was not showing up on my cone biopsy.
I am soooooo glad I followed my instints and not the doctors advice.
I am 5 weeks post op and feel great!
Good luck in whatever you decide.

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