hysterectomy or cone for CIN III??

Hello All,

This is the best site I have found for women who need help deciding how to handle a hysterectomy! Thanks to all who provide help here.

I am new to this group and this is my first post. I am an avid reader though and have gathered a lot of information from everyone.

I have a dilemma. I have seen 3 doctors, 2 of them gyn-onc and 1 an ob/gyn with an interest in cancer. I am diagnosed with CIN III (severe dysplasia) which extends into the endocervical canal. I had a cone biopsy in April with potentially involved margins (very close to the margin) and a positive ECC.

My first doctor says: You must have a simple hysterectomy and I would take the ovaries too.

The second doctor (gyn-onc) says: You must have a simple hysterectomy LAVH but keep the ovaries (which I will). He said a second cone would cause too much scar tissue and then he wouldn't be able to get accurate pap smear results b/c the canal would be too narrow.

The third doctor, a Navy doctor with nothing to lose, says: you can safely have a cone biopsy. He believes that if he takes a larger cone sample extending further up the canal, he can get the residual precancerous cells. It is not 100% but he feels sure that he can get the remaining cells. This doc also discounts not being able to get pap smears after a second cone.

My take on this: It seems like a coin toss.

If I have the hysterectomy, there is a chance there is nothing wrong and I am removing organs before trying all alternatives. There also is still a chance I will get vaginal dysplasia and some chance that my sex life will change. Right now it is very nice and I am scared about any changes there.

If I go with the 2nd cone to treat the dysplasia, there is a chance of residual disease in the cervix. That would mean a six week recovery, followed by a future hysterectomy. Another surgery. There is also a chance that the cone will get all the dysplasia and that it won't ever return.

I am leaning toward the second cone with a surgery date of 5/25 or 6/1. I am also getting a Burch bladder procedure and having a umbilical hernia repair. I will be ripped to pieces. Maybe it's just best to have a hysterectomy and get everything over and done!

I don't know what to do. If there are others who faced this decision, please let me know. Maybe I should post on the cancer board too. My husband goes out to sea a lot and we don't have any family support on this coast. All my friends just moved!! The military life is sad sometimes.

Thanks for reading such a long post and thanks in advance for advice.

Laura S.

(((Laura))) Welcome to Hystersisters! We're glad you found us!

You're right--it's a coin toss. I wish I could give something a little more solid than that, but I can't. You're going to have to decide which doc you trust the most, and how much risk (and which risks in particular) you are willing to take.

I will try to give you some things to think about, that may or may not help your decision-making process.

Are you considering any children in the future? If you are, then a hysterectomy is probably not your first choice. If you are not planning to have future children, then it's still a reasonable option to consider.

The statistics would say that 80-90% of women are essentially cured with a cone biopsy. Sometimes the first cone doesn't get it all and a second cone is needed to remove the remaining cells. It's not that uncommon to hear about women having 2 cones, and I've known a few who have had 3. You're right, though, it's still possible that the second cone may not get all of the abnormal cells, or that they will recur in the future. There is that possibility.

Do you know if you had squamous cell involvement or if you had glandular cell involvement (adeno)? These are different beasts, and it seems to be the norm to treat glandular cell involvement a little more aggressively because it is harder to track its progress should it recur. Also, the adeno has a tendency to have "skip lesions" meaning that some cells may be abnormal in one area, then an area of healthy cells, then another abnormal area. Squamous cell involvement is more typically seen as being continuous. My point to this is that with squamous cell involvement there seems to be more wiggle-room when deciding what to do. When there is glandular cell involvement, there seems to be more concern about getting it right the first time and not taking any chances. You might like to find out which cell is involved, and that might help clarify a few things for you.

Your second doc brings up a valid point. Having a second cone could produce a lot of scar tissue that might make future PAP's difficult to read accurately. Then again, not all women have a problem with that--everyone scars differently (and obviously your 3rd doctor doesn't think that's an issue). But it is a possibility that you need to be aware of. There is also the possibility that you could get serious scar tissue that would result in the cervix essentially closing. This is not common at all, but it does happen and has it's own problems (called cervical stenosis).

The cone can be used effectively for early stage cervical cancer, and they have to take a fairly deep sample to make sure they got everything, so I'm sure there's a decent chance that if they can get true cancer with a cone, that they could also get dysplasia by taking a deeper sample. But again, no crystal ball. You won't know for sure until it's over.

If you have the hysterectomy, you can be fairly certain that they will remove all of the abnormal cells. On a very, very rare occasion, a doc will not remove enough tissue at the top of the cervix (where it meets the vaginal wall), and some of the cells will be inadvertently left behind. However, remembering that a hysterectomy is major surgery, there are all kinds of possible outcomes. Most women do well with their hysterectomy, but some will develop lifelong problems. So, I'm glad that you are thinking about your situation seriously before making any decisions.

A little of my own history. I had a cone at age 23, 10 years of normal PAP's. Then I had 2 cryosurgeries and another LEEP. After all that, it was determined that I had too much scar tissue to ever get an accurate reading on a PAP, so I went they hsyterectomy route. It wasn't easy because I wasn't sure I was finished having children, and I deeply mourned that ability after my hysterectomy. I also had some vaginal work done because they found a bunch of abnormal cells on my vaginal wall. I am happy to say, though, that everything has recovered well and I feel like I've resumed my life as it was before my hysterectomy. The one exception is that since my TAH I have required an additional hour of sleep at night. I used to do great on the 6 hour plan, but I really need 7 hours to be functional now.

Good luck with your decision! It's a lot to think about. Remember--you have to do what's most comfortable for you. If you aren't ready to have a hysterectomy, don't let anyone talk you into it. If you are fairly certain that a hysterectomy is your best course of action, then go with that. I will keep you in my thoughts and 'ers during this time.

Please let us know what you decide to do and how things go for you!

Hello Laura. First, I just want to say that I'm so sorry you are having to deal with this. And I know how hard it is when hubby is not available. Although my hubby is not military, he is gone for three to four months every summer (no visits home!) and I do not have any family within close driving distance (all at minimum 14 hours away). It is difficult to struggle with such a decision and not feel completely supported. I don't know about your hubby, but mine tries his best, but phone conversations just don't give me the warm fuzzy feeling I'm needing.

I can also completely empathize with your struggles regarding decisions. I was/am(?) in the same situation. Last summer my LEEP cone speciman revealed a 2mm invasion(squamous), with extension into the endocervical glands, clear margins. I was assured I was "cured". First follow up was clear. Second follow up pap revealed high grade cell changes (moderate), but colpo was unsatisfactory (according to report), ECC scrapings were negative for gland cells (no squamous cells to assess). The recommendation was for a repeat pap in 6 months, but I'm going at the end of May instead. While I was waiting for the ECC results I was very adamant I wanted a hysterectomy, and a part of me still is, but as I have had some time to think, if surgery was needed I would opt for the cone biopsy again first. That way we can have a very accurate idea of what is happening and make some decisions accordingly. I would be very worried if I went straight to hysterectomy and then they found something there that required a different or further treatment. Best to know for sure before taking the plunge.

anyway, I'm not sure if this helped any, I just wanted you to know that I kind of understand the position you are in and your concerns. I know it is hard, and I think it is good that you are here asking questions and getting as much information as you can.

Take care.

Karen

Jeanine,

Thanks for your thorough answer! My severe dysplasia is epithelial not glandular. My abnormal pap did show abnormal glandular cells, but since that time, we have only found atypical epithelial cells, high grade intraepithelial neoplasia, aka CIN III.

My cone pathology says: "sections through both the cone biopsy and the endocervical curettings show a focal high grade squamous intraepithelial lesion with severe dysplasia along areas of the endocervical canal. In some areas, there is extension of the HSIL down into the underlying glands. The HSIL comes very close to the inner margin of the cone correlating with the fragments found in the ECC. No invasive tumor is seen."

Based on this, I thought I would have to have a hysterectomy because of the potentially involved margins. Part of me doesn't want to have lots of procedures (Leeps, cones, colpos) to ensure it goes away -- my thinking goes to "just get the hysterectomy and it will all go away." I am finished having children and don't have to worry about that.

Something stops me from going this far though. Thanks for sharing your story with me. It was very helpful to see that path you've taken. You did develop scar tissue so it is a very real concern. I don't know why my third doctor doesn't think it is a problem for me.

In the end, it seems like a lot of people get a recurrance of the dysplasia after a period of time. I am concerned about recurrance in 10 years because I will be 50 -- at this age it more easily becomes cancer (so the statistics say). Also, it's harder to have a major surgery as you age -- at 41 it wouldn't be as difficult as at 50. Oh the choices!

Thanks again Jeanine. I have a lot ot think about.

Laura

Hi Karen,

Thanks for your concern -- it's hard when our support goes away! The phone is not a good replacement, but sometimes it's all we get. I am fortunate that John will be around for the surgery which is next week.

Thanks for sharing your story with me. It is very helpful to know about the choices others make.

Why are you thinking about another cone vs hysterectomy? Is there something that really concerns you about hysterectomy?

I wonder if there is anyone out there that has had a cone, or 2, and then was dysplasia free for more than 10 years? All the studies I have read point to recurrence. With hysterectomy it looks like it almost 100 percent curative.

I like the odds on the hysterectomy but am torn because of the "chance" we might get it all on the second cone. I guess I want to get it right on the first guess and that may not be possible.

Now I am babbling, but thanks so much for your help.

I will let you know what I decide. I am going over to the hospital today for pre-op and do need to decide which surgeries I want.

Take care,
Laura