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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

First of all I want to say THAT SUCKS and I CAN TOTALLY FEEL YOUR PAIN.

Well, I'm not sure if I can answer your questions completely, but I'll give you my thoughts.

1. With regard to HPV, the test usually only tests for the 4 "high risk" types. So it's quite possible you have a low risk type that is affecting you in an unusual way.

2. This does seem fast. From my own personal experience, I went from normal to adenocarcinoma in situ in about a year. I have no idea the average rate of progression to CIN 3 and whether your case is common. But, from my understanding, the progression from CIN 3 to cancer takes usually about 10 years. So while it may seem scary, the chances you have cancer are down right near impossible.

I had a LEEP . . . I was surprised at how it was absolutely not a big deal.

The LEEP "cures" the dysplasia, I'm blanking on the percentages, but it's very high. Like 90%. And for those were the dysplasia comes back, women will have a 2nd LEEP and that's it. It is very RARE for this to be a recurring problem.

Good luck and you do NOT have cancer so stop worrying!!!
How can you have severe dysplasia without HPV? Answer is, you can't. Actually the it is not that the vaccine is no longer effective after age 26 but rather that this is the age group for which the vaccine has been approved by the FDA. Merck has actually already applied to the FDA to increase the high end age from 26 to 45.

There is only one FDA approved HPV test associated with the PAP and that tests for far more than 3 types. However, there is also another type of test which has been around for decades which is ISH (in situ hybridization) and can determine any of the types of HPV you may have.

Since HPV can affect other areas besides the cervix a negative PAP does not mean you don't have HPV as it could be in cells located in other parts of the genital or anal area. Typically you would not know this unless you developed a lesion there which was then biopsied.

The fact that you have had 3 HPV tests come back negative is confusing to me. Do you have copies of these results? If not I suggest you request them from your doc.

HPV can remain dormant for decades and the first place it shows up is not necessarily the cervix. I had severe recurrent vulvar lesions for over a year before my cervix was affected and then it went straight from being normal to being a CIN3 requring laser ablation. Have had no issues with the cervix since 1988 but have had and continue to deal with actual invasive cancer of the anus, now extending into the rectum. Vulvar lesions have been gone since 1991 when they did a vulvectomy and removed the majority of the skin harboring the virus. Unfortunately, this was after five years of constantly recurring lesions despite laser ablation, cryotherapy, LEEP, and therapeutic biopsies. Finally the vulvectomy was done and lesions have stopped recurring. Many times the initial symptoms are so minor that they are over looked and then it can go dormant.

I do not understand your statement about having to have a hysterectomy. HPV does not typically affect the uterus and the only reason a hys would be recommended is if you had adenocarcinoma of the cervix but even then, a trachelectomy could be done to preserve the uterus. While the trachelectomy can result in miscarriage and preterm delivery because the cervix is compromised by the trachelectomy, they do a cerclage (the stitch in the cervix you talked about) and having another child is not out of the question. Having had several doctors recommend very rash procedures for me, I'd suggest getting a second opinion on that one.

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