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Recurrent Severe Cervical Dysplasia/Cancer Concern Recurrent Severe Cervical Dysplasia/Cancer Concern

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Unread 12-22-2001, 06:14 AM
Recurrent Severe Cervical Dysplasia/Cancer Concern

This is an awesome site! I'm scheduled for TAH/BSO (do I have the abbreviations correct?!) on 1/10/02 due to recurrent severe cervical dysplasia after 2 LEEP's over the past two years. I'm 45 years old. It keeps coming back fast and as severe each time. I'm going to an oncologist/gynecologist now who will do the surgery. After the MOST thorough exam I've had in my life, there's no sign of anything that is causing the recurrent condition in the vagina or elsewhere that can be seen with instrument enhanced visual observation. A biopsy higher up in the cervical canal (maybe the uterus?) came back CIN II. They can't due a vaginal hysterectomy due to so much (most) of my cervical canal being gone due to the LEEP's. My concern is the possibility of cancer higher up beyond the cervix. Has anyone had these procedures done as a result of recurrent severe cervical dysplasia and was cancer found beyond the cervix? THANKS!!!
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Unread 12-22-2001, 08:43 AM
Recurrent Severe Cervical Dysplasia/Cancer Concern

Hi Peg,
This is indeed a great site. I'm so glad you found us while going through this. We of course don't offer medical advice, but we have all been through some type of pre-cancer or cancer diagnosis, and unless you have been through it, its really hard to relate to the things and feelings one goes through, so this site has been a God send to me for sure and its a wonderful place for support and hugs when we need them too.

I am sorry I can't answer your questions as I had ovarian, but I am sure others will be along shortly who have been through CIN , however I did want to welcome you , and wish you well with your surgery on the 10th!!

I will keep you in my thoughts and prayers, that all goes well, and that the surgery will rid you of all the bad cells so that no further treatment will be required.

Check back often as I say there will be others along I am sure to share their experiences with this with you.

Holiday Hugs Peg!!
Unread 12-22-2001, 05:51 PM
Recurrent Severe Cervical Dysplasia/Cancer Concern

Hi Peg,

I had my TAH/BSO after a couple of bouts with cervical dysplasia. I never had a leep, but did have two Cone Biopsies. The path report after the hyst came back showing a high-grade lesion (CIS) high in the endocervical canal. The dr told me we probably would not have found it without the hyst.

I'm not sure I understand your question, but I've never heard or read of someone going in for a cervical condition and having them find a uterine cancer. There are a few ladies on this board who have dealt with cervical cancers who may have some better information.

Good luck.
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Unread 12-23-2001, 05:14 AM
Recurrent Severe Cervical Dysplasia/Cancer Concern

Hi, Peg! Welcome!

Sorry to hear you are having these recurrent problems, but it looks like you'll be having your TAH soon, and that should take care of the problem! I had a cone 15 years ago, 2 freezings a few years ago, then a LEEP one year ago before my TAH. I've done a lot of reading about all of this, and my guess is that if a woman's lesion is high enough in the cervix that it might grow into the lower end of her uterus if left unattended. When I had my cone and LEEP the doc also did a D&C just to make sure there was nothing there. So, it's probably possible, but most likely unusual.

Good luck with your surgery! I hope all goes well. Remember to be a good princess and rest afterward.
Unread 12-23-2001, 11:34 AM
Recurrent Severe Cervical Dysplasia/Cancer Concern

I wanted to welcome you to the site and let you know that we are all here to help and give support. I was diagnosed with cervical cancer, but mine was contained to the cervix. There is a possibility that your problems could be in the lower uterus, but you would need to speak to your doctor to be sure. We can share our experiences with you but your own doctor would be able to tell you best since he is aware of the full results of your testing.
Unread 12-23-2001, 05:54 PM
Recurrent Severe Cervical Dysplasia/Cancer Concern

Hi Peg, sorry its been a while till I could answer but I am on holidays and can only access computers at certain places.

So as for the cervical abnormalities moving further up... I think it usually goes deeper into the tissue rather than travelling further into the uterus. It usually takes awhile to progress to cancer from CIN 2. You have caught it in early stages

I hope it all goes well for your surgery, please email me if you wish. Dont forget we are here for you always . Lots of love x x
Unread 12-26-2001, 06:10 PM
severe dysplasia

I have been diagnosed with severe dysplasia (CIN III) and after a cone biopsy that showed the abnormal cells having moved deep into the tissue of my cervix, a hysterectomy has been recommended. I have been on this website several times (THANK YOU FOR YOUR VERY EXISTENCE!!!) and have found some great information. One thing that I've read concerns me though....I have seen that several women have been diagnosed post-op with abnormal cells on the vaginal wall. My doctor has never mentioned anything about testing any where other than the cervix. Is this something that I should be requesting or should it be standard operating procedure???? As for now, I am procrastinating badly.... During my research, I was sent some info from a national organization for women who have had or will have hysterectomies. The info was frightening to say the least.... I don't want to mention the organization by name at this time, but I could really use a reply from someone who has had the surgery and is NOT experiencing problems!!! I know I cannot wait long to schedule this surgery so..... Thanks soooooo much!!!
Unread 12-26-2001, 07:18 PM
Severe Dysplasia

My personal experience only! I am NOT an expert or even very well versed! I had severe cervical dysplasia found with a routine PAP, then a LEEP to take a part of the cervix with the abnormal cells. The margins came back clear (clean?), so thought everything was okay.

Went for six month repeat PAP - severe cervical dysplasia was back. My regular gyne said that only happened in 1% of women who had a LEEP for cervical dysplasia (my sister in law's gyne said probably come back in 3 - 4% of women who have a LEEP for this). Had another LEEP, about a year after the first. Margins were clear/clean, so they thought it was history.

Another six month follow up PAP - surprise - right back to severe cervical dysplasia. My gyne said this does not come back very often at all after a second LEEP. He said probably due to a virus I have [HPV (NOT HIV)] that you can never get rid of, you have it forever, and that the type I had was an especially strong type. He was SO supportive, said many women have the virus, in all social levels, classes, (or something like that). Definitely making me feel better! He referred me to an oncologist/gynecologist for exam/recommendations.

I did a search on the Internet for recurrent severe cervical dysplasia and kept finding articles on this happening with women with HIV!!! None of my doctors had even referenced this as being a possibility, but the search results scared me so much I did one of those at home anonymous HIV tests that thank God came back negative. Talk about an agonizing waiting period!!!!

The oncologist/gyne did the most thorough exam I've ever had in my life - a vaginal colposcopy. I had had cervical colposcopies prior to the LEEP's, but this one every centimeter of my vagina was poked, prodded, and examined. He swabbed everwhere first with a vinegar based solution that he said would identify any abnormal cells along the vaginal walls and everywhere internally and externally in that area that he could see with instrument assisted examination. Maybe this is the type of exam that first identifies abnormal cells in the vaginal walls?

In my case he could find no abnormal cells where he examined that might be the cause of the dysplasia. Plus he did a biopsy way high up in the cervical canal (did you know there is a speculum for your cervix!!!!) that came back CIN II. This was part of the reason to opt for a total hysterectomy. He said a CONE excision(?) was an option, but so much of the cervical canal was already gone from the two LEEP's, he thought it best to take everything out to prevent progression to cancer, or just in case there might be cancer or pre-cancerous conditions higher up (though an uterine biopsy after the first LEEP came back okay). Plus I have fibroids that have really been no big deal to me - nothing I couldn't manage every month, but it will be nice to not have to manage with them anymore! The oncologist/gyne will be doing the surgery, though he said I could have had the regular gyne do it. Having a specialist do it is a bit reassuring, plus he seems so into little details - also a comfort!

I have to have it done abdominal because not enough cervical canal left to do it vaginally. He gave me the choice of having ovaries out. My personal feeling is he's in there, take it all to avoid any future potential problems/surgeries. I'm forty five, have three kids and think I'd rather do controlled menopause with HRT than wait and see what might or might not pop up over the next few years and guess where I'm at with hormone levels, etc.

Whew. Surgery is scheduled for January 10th. This site has been outrageously supportive and informative - a true God send for me!!!!! Hope this helps anyone going through similar things! Plus share back if you are! Thanks!

Unread 12-26-2001, 07:27 PM
Recurrent Severe Cervical Dysplasia/Cancer Concern

Hi Cntycop,

I'm almost a year post-op with a dx of CIN3/CIS. If you opt for surgery, you will have to have to continue with pap smears to check the vaginal walls. Most dr's have them done every 3 months for a year or so, then every 6 months. My dr never mentioned it prior to my hyst, but I presume he took tissue samples from the vaginal walls prior to surgery. I presume it's SOP, but certainly you should ask your dr.

Vaginal cancer is supposed to be pretty rare, but there are a few ladies on this board who have had problems after their hysts. Remember, though, that most people who do OK eventually just move on. I'm still close enough to my surgery that I hold my breath after every pap smear (now called a vault smear).

My first abnormal pap came back in Nov, 99. It took until Sept, 00 (after cones, paps) for my dr to recommend the hyst. I asked him if I could wait until after the holidays and he said OK. In hindsight, I think it was kind of stupid of me to wait and I wouldn't recommend it. If, after you do your research, you decide on the hyst......... I say, just do it!

Good luck.
Unread 12-27-2001, 07:56 AM
Recurrent Severe Cervical Dysplasia/Cancer Concern

Hi Peg,
Just had a TVH (kept ovaries (I'm 35). I did have a leep which indicated adenocarcenoma in situ. Had the hyster and they found that it was adenocarcenoma stage 1A. It was confined to the cervix and the margins were clear. Your doctors sound amazing! It sounds like your making a good decision and are in excellent hands.

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