After Hyst - CIN VIN VAIN & Displasia Cervix

Hi Sisters,

There is a previous thread on here about "Treatments didn't work...Now what?" but a hostess asked the sisters to not have such a long thread, so I am starting a new thread.

I was diagnosed with HPV and CIN3/Carcinoma in Situ in 1996, at which time my regular gyn did a cone biopsy. I was 23 years old, and like everyone else, I asked, "What is HPV" and "Why haven't I ever heard of it?"

Anyway, I know all about it now. I know that it will be with me forever. I am now 33.

I got a few good paps after the cone was done, much to my relief, and then I stopped following up on my gyn visits like I should have because I was getting scared about it.

I went back to my regular gyn a few months ago, after not going for almost 7 years (trust me, I know this is so dumb, but the fear was overwhelming). He did a pap which came back High Grade SIL and then he did two separate biopsies and a colposcopy. The diagnosis was CIN 3/Carcinoma in Situ again. I was horrified. My regular gyn recommended a hysterectomy and not another cone because removing what was left of the cervix would make it impossible for me to have children anyway.

I never had children - a huge regret. I was always "too busy" or "just not ready".

Regardless of the fertility issue, I wanted to live. That was my first priority of course.

I went to a gyn oncologist for a second opinion. He also recommended a hysterectomy. He performed the hysterectomy on March 26. I kept my ovaries. The path reports came back as Carcinoma in Situ with clear margins.

My gyn/onc informed me that HPV will be with me forever and that he doesn't treat HPV but he treats the SYMPTOMS of HPV.

It is quite clear that frequent follow ups are needed to watch the symptoms. I will go every three months for the first year, and then every six months for the next five years. I WILL NOT MISS ANY APPTS!! I may even go more often than that.

The anxiety has really gotten to me.

What I would like to ask of my fellow sisters who have had Carcinoma in Situ/CIN3 or Cervical Cancer, is how are your follow up visits going? (since having your hysterectomy)

Do you smoke?

Has anyone heard of any therapeutic (curing) studies/remedies that might be possible in the future?

Every single time I hear about the Gardasil vac, I am happy for the young women of today and at the same time I feel sick that I lived about two decades too early to take advantage of this incredible breakthrough.

Joannel and Jeanine - I have been reading many of your posts. You are informed ladies. I hope I hear from you and all the other sisters who are dealing with this.

Thank you to all, in advance.

Alison

hello, alison. i'm sorry to hear you had a recurrance of the cin3/cis and dealing with recurring dysplasia. and, i hope your hysterectomy recovery is going smoothly. was it a tah? remember it's major surgery, and will take time to get back to yourself. be good to yourself as you're recovering!!!

i'm thrilled, too, for the girls and young women who will be able to have the gardasil vaccine to help protect them from what we're going through. and, i'm trying to do whatever i can to promote education and awareness about hpv.

hopefully you won't continue to battle dysplasia, but it's good to know you'll be staying on top of your follow up pap smears and check ups.

and, as for me, in answer to your question, i'm not a smoker.

take care.

Hi Alison. My Dx was the same as yours...found that out after not going to get an annual pap for 10 years, DUH! I had a TAH in March of last year. My follow up is every 6 months for a vault smear. My last pap (March 17) came back ASCUS and I underwent a colposcopy, fortunately, he found no abnormal areas to biopsy, so I will go back in October for my regular 6 month smear. I am 37 and I do smoke, although I am not proud of that .

I hope you are having a smooth recovery, and good luck to you in the future....may all of your checkups be uneventful!

Have a good day and God Bless!

Maybe this isn't the right thread to ask this but Joanne, you've prompted a question. About gardisil, J's doc told her that even with her moderate dysplasia that she (the doc) recommends the shots as soon as she is over her current LEEP procedure. The doc estimated that even with her current situation that she'd have abour a 40% protection rate from additional cervical cancers. I don't know where she got that though. Do any of you?

having the gardasil vaccine after you've already got hpv can prevent you from getting an hpv strain that you don't already have. the vaccine protects against two of the strains that can cause cervical cancer and two strains that can cause genital warts. my doctor, a gyn/onc, told me she would give me the vaccine if i were interested. it's not following the recommended use of the vaccine, but can still offer some protection. as for the 40% number, i don't understand what a 40% protection rate means. as far as i know, there's no known statistics for who will or won't get cervical cancer, regardless of their hpv status.

kelpn - Our stories are almost identical! As for smoking, I smoked for 16 years, quit for the month of surgery but just started up again, due to my nerves. Certainly, I am not proud of this disgusting habit. I know I will have to quit again soon.

Joanne - What level(s) of displasia did you have? Could I ask your age?

Gordonk - I asked my doc if I could get the Gardasil vaccine to protect me from other strains of hpv that I don't necessarily have yet. He said no and then he said I was too old. Gardasil is for 9-26 year olds, I believe. I am 33. My response might not be that helpful but that is all I know about the subject.

To all, I hope your recoveries are going well. Good luck on the upcoming follow up visits. I am recovering well. Thank you for the good wishes.

Does anyone know what the recommended treatments are for VAIN 1,2, or 3 and VIN 1,2 or 3?

Does the gyn swab the vulva for testing in the follow up visits?

How do the follow up visits compare the pre-hyst visits?

Have a nice evening,
Alison

alison, i'm 46 years old.

follow up pap smears are just like paps without having a cervix except that the sampling is done of the vaginal cuff. sometimes a doctor will also take a sampling of the vaginal wall (again, same as with prior to a hysterectomy).

i have vain1, and my gyn/onc has recommended a no treatment plan. if it progresses to vain2/3, then she will treat. i believe there are several different treatment approaches, though laser surgery seems to be the most common next step.

Has anyone had a NORMAL pap/vaginal smear test result (after being diagnosed with Cervical Dysplasia, Carcinoma in Situ of the Cervix, or Cervical Cancer) AFTER they had their hysterectomy?

i had a normal pap result after my hysterectomy which was done for cervical dysplasia. that would be the most common scenario - having a normal pap. when i had a pap 18 months after my tah/bso, it showed dysplasia returned.

i didn't mean to say a normal pap is the most common scenario...especially not when i'm posting on the cancer concerns board. sorry! i meant it would be the expected result if the results of the hysterectomy were that the surgery had removed all of the cervical dysplasia or cancer.