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Hysterectomy for carcinoma in situ? Hysterectomy for carcinoma in situ?

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Unread 08-10-2009, 02:46 PM
Hysterectomy for carcinoma in situ?

Hi all,
I was diagnosed with carcinoma in situ (cervical) June 2009. I just had a cone biopsy three weeks ago but did not get clear margins. My oncologist wants me to come back in four months for a colposopy and another set of biopsies. He is talking about another cone biospy but I said if he has to put me under anesthesia again I just assume he do a hysterectomy which he did not seem too happy about since I have not had any children. I am 39 years old and decided a long time ago I did not want children. I don't want to keep going thru this, knocked out on anesthesia, surgery, not getting the all clear. Not to mention the emotional toll it is taking on my husband and I.
It's just not worth it. When is it enough?After I explained this to him he said if we decided to go with a hysterectomy he would leave my ovaries and perform a laprascopic/vaginal hysterectomy.

Has anyone else out there had positive margins after a cone? What was the outcome? Did it clear on its own or was further surgery needed?
What about hysterectomy for carcinoma in situ?

I would love to hear your stories PLEASE.
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Unread 08-11-2009, 04:53 AM
Re: Hysterectomy for carcinoma in situ?

Hello Labrat,

I have a history of two times Pap 3b and carcinoma in situ. I had a leep in Jan. 2007; after that I had a pap 1 (good news) and in April 2009 I again had 3b.
At that point I found myself in the same spot as you are I suppose: I really wanted a hysterectomy (also because I have had four/five years of very heavy bleeding because of fibroids and a large cyst that had nested on the outside of my uterus).
However, my gyn, a doctor whom I really trust a lot, was very apprehensive. She preferred another leep. Instead of a hysterectomy,
As she explained to me, a hysterectomy would have helped my problems a lot. But, at the other hand, their experience is that a lot of pelvic problems like prolapses will occur after 15, 20 years when a hysterectomy has taken place. I could see the logic of this.

I did therefore have my second leep in May. Unfortunately it turned out I had adenocarcinoma 1b1, so I did have to go thru surgery as well and had my TAH/BSO on July 1st. And am starting today with my radiation because the margins weren't clear.

Looking back (water under the bridge) I think I should have insisted more, or should have gotten a second opinion.

Wish you lots of wisdom and hope there are sisters who can share their experience so that you can make the best decision.
Unread 08-11-2009, 07:06 AM
Re: Hysterectomy for carcinoma in situ?

Hi Anna1961,

Thank you for your response! Yes, your situation sounds very similar to mine. I just want to avoid an additional surgery if I can. The thought of being under anesthesia is terrifiying to me, more so than the actual surgery. If I am headed towards a hysterectomy anyway then lets just get it over with. Like you said you felt like you should have pushed for it and that is what I am going to do if they say I need surgery again.
I hope you are doing well now!
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Unread 08-16-2009, 03:55 AM
Re: Hysterectomy for carcinoma in situ?

Hi Labrat

Your experience seems similar to mine too, but has been handled differently. I live in Scotland so perhaps it's just a difference in medical systems.

When I had my coloscopy I was expecting my abnormal cells to be treated on the day, but the doctor said the area was too large so I went into hosptital to have a lletz under general. It was my first ever experience of an anesthetic and I was terrified, but in fact it was ok and emotionally much better than the coloscopy which was awful.

Unfortunantly when the results came back they were not so good, there was CIN3, CGN and an area of adenocarcinoma (1A2). Also because the lletz burns the tissue I did not have clear margins.

But my doctor gave me a choice. I am 32 with no kids, he said that if I was 40 with my family complete then it would be a hysterectomy straight away, but because of my circumstances he was offering me the choice to have another lletz and have my lymph nodes checked, so that by keeping a close eye on my cervix over the next few years I could preserve my fertitity.

I have decided to go with the hysterectomy. He seemed to imply that it was likely that this would be neccessary in the future anyway, and kept on mentioning lots of ladies he had treated who had had a couple of kids after the treatment before coming back for a hysterectomy and I just feel that I can't keep putting myself through more and more treatment just on the off-chance that I will meet someone and have a baby at some point in the future.

It has been a difficult few weeks, but my surgery is scheduled for Thursday (4 days to go!) I am feeling very sad for the impending loss of my womb, and that I am never going to have a baby, but am certain that I have made the best desicion for me, I have a good job and a bright future and I really want to be around to enjoy it.
Unread 08-17-2009, 05:27 AM
Re: Hysterectomy for carcinoma in situ?

i'm almost one year on from a diagnosis of adenocarcinoma-in-situ and I have a hysterectomy booked in.

Initially I had a LLETZ to treat my cells, but had postive margins. My gyn recommended a hyster then, but I sought a 2nd opinion with a gyn/onc. He said to do a cone biopsy. So thats what we did, and the cone biopsy was all clear.

After that point I got very confused, why get a hyster if it was all clear? Gyn/Onc said I could have another kid if I wanted, gyn said I wouldn't be able to carry one. I moved interstate (within australia) saw another gyn/onc for a 6 month check up and this was again all clear. His opinion is that I could have another baby if I wanted, and just needed constant monitoring. But, Six monthly checkups to check that AIS hasn't returned or progressed. His opinion is that two years of this is the most he'll do or that I'll probably put up with, he says once childbearing is complete a hyster is recommended.

I'm booked in for October 13, but I'm trying to get in for another checkup in early september. If everything is all clear, I'll probably put it off for another six months. I think. I'm not sure. Such a ridiculously hard decision and I wish I could help you more.
Unread 08-24-2009, 01:35 PM
Re: Hysterectomy for carcinoma in situ?

I was diagnosed with CIN 3 back in 2004 and had a cone biopsy done, margins did not come out clear. I was thinking of getting a hysterectomy because I was concerned that it would advance to cancer. My GYN felt that she got everything during the cone biopsy even though the margins were not clear and suggested I have more frequent paps. I was 43 at the time and newly married and she wanted to preserve my fertility, even though I did not plan to have any kids at that age. Since then, I did have one pap that was ASCUS and was initially having paps every 4 months for the first two years. My paps have been normal the last couple of times and the HPV is not even showing up. It's now been almost 5 years and time for my annual pap so I start to get nervous and in the back of my mind, I have that fear that I did not have clear margins back in 2004. But I am glad that I have not had to have a hysterectomy but know that someday it may be necessary.
Unread 08-24-2009, 09:01 PM
Re: Hysterectomy for carcinoma in situ?

I had glandular adenocarcinoma in situ that came back w/clear margins in June. But to get to that point, was a very scary road b/c my dr was concerned that b/c it was glandular it was in the advanced stages. Even though I had clear margins, I had to take a close look at my life and family history. I am 47 w/3 kids and raising a grandchild as well. I'm active and goal-oriented in my business and life. My 27 yr old had just been diagnosed with kidney cancer and had one of her kidneys and a 5 cm mass removed. She is in a long term study b/c this is an old person's cancer and she has many masses throughout her body. Two of my maternal aunts (neither one dated or married/untouched virgins) had cervical cancer, one maternal aunt died of blood cancer, my maternal grandmother had uterine cancer, and my only paternal aunt is a breast cancer survivior. All the other women on my mom's side had early hysterectomies for as long as anyone can remember b/c of "female problems." However, I had no symptoms at all; it was detected on a yearly pap. My gyn said I was "cancer-free" after the cone, but a second opinion from a gyn-oncologist helped me make up my mind. He questioned why I would even risk it - do the surgery and take it all. So that's what I did 2 weeks ago. My gyn did not think there would be anything in the path results so I was very optomistic. But today the results came back and I had a pre-cancer leison that they found. Thank God I had the hysterectomy! I may not have been so lucky on the next pap. It leaves me unsettled that the dr said I was cancer-free, and while technically I suppose I was, in my mind I wasn't. This surgery could have very well saved my life. My advice (if you want it ) would be to try to take in the big picture and consider all the risks. I was never 100% certain that I made the right decision until today, so don't expect that kind of comfort level. Women are never that lucky! Good luck in your decision. Know that you are not alone in this.

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