Facing Hysterectomy

Hi - I am new and hoping to find others faced with this situation. I am age 53, had two children by c-section and went through menopause six years ago. Had some abnormal PAPs (first ASCUS in 12/05 and the repeat "CIN I with HPV effect" in 5/06). Underwent colposcopy with biopsies - there were lesions on cervix as well as vaginal wall - then had LEEP and cone biopsy in July, 2006. The results of the cone biopsy were CIN I with HPV effect, margins of biopsy free of dysplasia. Four months after procedures the follow-up PAP is still ASCUS and the subsequent HPV testing showed positive for low and high risk strains of the virus. At the follow-up exam my gyne said I have "practically no cervix left and she could not biopsy or LEEP again if she had to". With the follow-up PAP still showing abnormal cells and having multiple strains of HPV the doc is recommending hysterectomy. Have to see her this week to discuss further....but I guess since the HPV never really goes away and only minimal improvement in my PAP results maybe we should just remove the offending parts before it progresses to something more serious??!! Has anyone else had a similar experience? This just seems so drastic since I never was one to have big gyne problems before (no unusual bleeding, fibroids, even menopause was pretty uneventful for me!). Any and all input would be appreciated before having to make the big decision! Thanks!

to Hystersisters! We are glad you found us!

First a question--do I understand that you have already had both a LEEP and a cone? You said your doctor stated you had very little cervix left, so I wanted to make sure I understood your situation. It can be challenging to treat this with anything short of a hysterectomy if you really have very little cervix left.

I am somewhat concerned that you mentioned you had lesions on your vaginal wall. Can you provide further information on that? The LEEP or cone would not take care of that, and I'm curious to know if those spots are being monitored as well. If they still exist, they need to be treated as well. I had carcinoma in situ on my vaginal wall near the vaginal entrance, and I had a fair amount of my vaginal wall resected to get rid of that. But those areas can also be treated with laser (if they are still there). My gyn does a yearly colposcopy with vinegar test of my vaginal wall just to make sure nothing new is popping up.

You might like to request a second opinion with a gynecologic oncologist. They are the experts when it comes to female cancers and precancers and they are trained extensively in the most current treatment and surgical techniques. Such an opinion would be highly beneficial as you are deciding what course of action to take.

Good luck! Please let us know how your appointment goes and what you decide to do. I know other ladies will be along to share their experiences and opinions as well. If you have any additional questions, please let us know!

Hi and thank you for your reply. I had a LEEP procedure with cervical cone biopsy on 7/31/06. At that time the gyne also did a cauterization of the proximal portion of the vaginal walls due to the lesions she found there. I was so sure the follow-up pap would be back to normal but it still came back ASCUS.....feel a little like a walking time bomb. When I went for my follow-up she really did not comment at all on the vaginal lesions and I forgot to ask but will do so this week when I meet with her. She has not suggested a gyne-oncologist but I will certainly ask about that also. What I am sure about is she did say there is almost no cervix left additional biopsies or another LEEP would not be possible. So, do I really have any other option other than the hysterectomy, is this being overly aggressive and would it be better to take the "wait and see" approach. I just don't want to have a needless surgery but if there is a high likelihood of this turning to cancer then of course it is a no-brainer.

Well, the thing about ASCUS is that it doesn't really mean anything is abnormal. It translates to "atypical squamous cells of undetermined significance". Atypical is not the same thing as abnormal. It's kind of like saying "hmmmm....not normal, but not abnormal either.....hmmmm". You can have an ASCUS reading for many reasons--infection, sex within the previous 48-72 hours, continued healing from your previous procedure (most of that is usually resolved by 4 months, but some people have ongoing swelling or irritation). That's where the biopsy usually comes in at. It seems odd that if you've only had one LEEP that you wouldn't have much cervix left, so a large section must have been removed. Most women can have at least 2 LEEPs or cones. But she may have felt that your situation required a large LEEP. So, usually, the biopsy helps determine if the ASCUS is really an abnormal or if it's something else. Some docs will simply retest 3 months after an ASCUS. But you've got the HPV thing going and not much cervix left. If you only had low-risk, it probably wouldn't be a big deal to wait it out. But since you have high-risk, it's a tougher call.

You're in a tough spot. Many doctors do not treat CIN 1 anymore because it's been found that many times it will resolve on its own. Usually CIN 1 is associated with the lower risk strains of HPV and they just don't tend to worsen. The high risk strains are more likely to cause the HGSIL readings (CIN 2 or 3). Those are the one's we worry about turning cancerous, and not even all of those will turn.

A second opinion is probably a really good idea. Since you've had vaginal involvement, it just makes it a little more sticky. That doesn't mean the gyn/onc necessarily needs to do your surgery, but it would just be nice to get their take on your situation. It's just nice to have a second set of eyes and a second set of thoughts when making large decisions like this. I think most doctors are pretty understanding when someone requests a second opinion. It is YOUR future that we're talking about here, and you should get as much information as you possibly can.

One more note. Having the hysterectomy will not necessarily end your problems, but it will hopefully minimize your chances of recurrence. Even though the cervix is removed, there can be stray cells left behind that can grow again on the vaginal wall. You've already had this happen. It's going to be very important for you to continue to have regularly-scheduled PAP's to watch for any recurrence. Addtiionally, adopt the healthiest lifestyle you can with lots of good food, vitamins (include folic acid and the carotenoids), moderate exercise and prayer/meditation/yoga/quiet time. These are all believed to contribute to an improved immune response which might help you fight this virus a little more successfully.

Good luck!

Thanks for taking the time to reply again. I'm so confused by all of this right now and hope things will be clearer after I meet with the doc on Wednesday morning....poor thing won't know what hit her after I get done with all of the questions and what ifs and whys. And this HPV thing is really messing with my head....I hate all men right now (good thing the only males around here are the dog and cats) and regret the day I ever got involved with ANY of them!! When I was younger and first became sexually active this virus was NEVER spoken of, you weren't warned about it causing such problems later in life....who knew??!! Well, at least I have found a place to vent and ramble on......

I'm sorry this has happened to you. There are many here who are dealing with cancers that have struck them out of the blue with no rhyme or reason. Don't spend your energy exhuming the past. You will need all your health for your body to fight and recover. I celebrated 50 attached to my chemo machine last year, no generational history or health history of my own would have signalled anything even remotely developing. I hope this will be quickly resolved for you and you will soon be on your way to new adventures and enjoying your family.

There is much more media attention to these diseases and their causes, but I truly doubt many teenagers are paying any attention to what MAY happen a few decades from now. It is all the more reason for us to tell all those we know and love. Personal attention and wisdom will have a much greater affect.

hello, cin-sister. as jeanine wrote, having ascus on your pap doesn't necessarily mean there's a serious problem.....often it's indicative of inflammation for one reason or another and will go away with time. often a gyn will just wait and re-test after an ascus result. if the pap is coming back with dysplasia, then colposcopy is often the next step, and biopsies are taken as needed.
for me, i had recurring cervical dysplasia....had 2 leeps (with normal paps in between...then dysplasia returned)....and after the 2 leeps didn't have enough cervix left to do another, so i had a hysterectomy. when i originally had hpv problems, about 10 years ago, i had lesions on my cervix and vaginal walls, and at the time, it was treated with cryotherapy and 5fu (topical chemo). since then, i 'just' had dysplasia on the cervix. now, even after the hysterectomy, after having 'good' paps, i now have vain1...i'm in that small group, like jeanine that has the dysplasia return even after the hysterectomy.
and, i know what you mean about hating men! i hesitate to even have sex again (though i have...with a guy i'd had sex with before the hyster), both because of what i have, and because of what's out there....especially because condoms don't fully prevent transmission. it's certainly an awful virus.
i hope some of what i've shared is helpful for you. best wishes.

joanne

Well, I wish we could blame the men, but they had to get it somewhere, too , and I'm guessing that women were involved in that in probably most/many of the cases. But I do understand your feelings about that. It's a very frustrating situation. Reemmber, this is a very common virus. The majority of people who are or have been sexually active have been exposed to it--most just fight it off without ever having had any symptoms.

Really, it wasn't known that HPV was the cause of cervical cancer and dysplasia until about 20 years ago--at least that's when some of the research was coming out. It was another 10-15 years before it was spoken about very often. Even 5 years ago, many women had never heard of HPV because their doctors weren't talking about it. So really, no one could have warned you about it as a young woman because no one knew then. But even knowing that doesn't really help the aggravation of it now, does it? Keep venting. I think it helps.

Do yourself a favor and write down all of these thoughts and questions you're having so that when you get to the doctor you'll get everything answered. What I find happens to me is that I'll ask a question, and then when I get the answer I have a question about that, and then maybe another question about the follow-up answer. Eventually I get so off the original course that 2 or 3 of my original questions didn't get answered because I got sidetracked by the others. Sometimes our docs are a little taken aback by the lists we bring in with us, but it ultimately ends up keeping the conversation on the right track and keeps us from calling back later. And it lets our docs know that we realize this is serious business and that we're trying to get as much information as possible. Give it a try!

you're so logical, jeanine...yep, the men we were with had to get it somewhere too. argh!!! and, yes, when i first discovered i had hpv, it was something i'd never heard about....and the doctors at the time weren't all that up to speed on everything either....i think the information just wasn't out there yet. it's such a different situation now....so much more awareness and knowledge.

All of you have been very helpful and I appreciate the time you took to send your replies. It sounds as though it should be possible to take more than one biopsy or do more than one LEEP - why then after only one time is there practically no cervix left on me to do that and we are talking hysterectomy? I went through menopause six years ago - does anyone know if the cervix would atrophy so much after menopause that a single procedure would leave practically nothing? Another question for the doctor, I guess! I do realize that having the hysterectomy will not remove all the possibillities of something turning into cancer and that is part of the reason I strongly question if surgery is even the right thing to do. My feeling is the doctor thinks this dysplasia is just going to be a recurring problem so let's get things over with now.....and maybe she is right, who knows. I am just not ready to have to make that decision.

My sexual relationship days are over....it hasn't been a bit enjoyable anyway since menopause (vaginal dryness, pain, lack of libido in general) and this just reinforces my belief that it isn't worth the effort. On a positive note, though, I do have my two kids to show for it but that is about all. I am getting weepy now....maybe it is time to go to bed.