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Old 02-11-2008, 02:46 PM   #1
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High Grade Dysplasia, Possible Cancer

I already had 2 LEEP procedures, just went for a pap test and results came back high grade dysplasia with possible cancer. My doctor informed me it has been very agressive and basically gave me 2 options, perform a very invasive cone biopsy or hysterectomy. I am newly married, 29 and was always looking forward to being able to have my own children. If I do the cone, there is a chance that it could come back worst case and I would need the hysterectomy anyway. I dont know what I should do.... I basically need to make a decision within the next week as my doctor does not want to wait. Has anyone had this happen? Are there any other options? He also mentioned that doing the cone leaves scar tissue and basically pap tests after that become harder and harder to detect abnormalities... I dont want to have my cervix removed and then find out that it was not cancer and have 100% chance not being able to have children, but I dont want to do the cone and possibly be wasting valuable time with my life and cancer spreading to other organs and needing a full blown hysterectomy where they take out ovaries and everything else.... Any advice, help, ANYTHING.

 
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Old 02-11-2008, 04:28 PM   #2
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Re: High Grade Dysplasia, Possible Cancer

I'm so sorry you are experiencing this.

First, is there anything you are doing/taking that could be contributing? Steroids or other immunosuppressants; smoking (even secondhand)? How is your diet, sleep schedule? Are you healthy otherwise? Do you have other health problems that might be aggravating the dysplasia?

Second, even if you are healthy, you need to boost your immune system. You might want to get onto a vitamin/supplement regimen and/or suppository regimen (use search function for stories). I am NOT saying it will reverse severe dysplasia and I would never bank on it to reverse severe dysplasia, but I don't think it can hurt. There are also escharotic treatments that may help for more advanced dysplasias but if you need surgery right away that does not remove cervix, you may have to wait until you're healed afterwards.

Third, get a second opinion and possibly a third from a gyn-onco (not just gyn) if you haven't already. I see you live in NY, so it shouldn't be hard to find a gyn-onco. At this point, a regular gyn may not have as much to offer in the way of opinions or treatments as a gyn-onco.

Is the issue that it keeps returning and going high grade fast, or is the issue your gyn isn't getting clear margins from the leeps?

Last edited by BE 123; 02-11-2008 at 04:42 PM.

 
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Old 02-11-2008, 04:55 PM   #3
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Re: High Grade Dysplasia, Possible Cancer

Thank you so much for your response....
I used to smoke (light/social) maybe 2 cigs a day but have quit. I eat very healthy and usually get 7-8 hours sleep. I have no other pre-existing conditions other than HPV. I had my first LEEP in July 2005 and second in Sept 2007. My original doctor was not very good. I switched doctors in April 2007. My first pap with him came back ASCUS but because of my history he did a colposcopy (spelling) and it came back High Grade Dyplasia. He scheduled me for my LEEP this past September. I recently went for my follow up PAP and it came back "High Grade Squamous Intraepithelial Lesion with Features Suspicious for Invasion". I am going to get a second opinion and will definitely look for GYN/ONC. I am very nervous, I dont want to make the wrong decision in whichever option I choose. I feel terrible for my husband, even though he assures me my health is his main concern, not children. I am trying to be strong on the outside but am an emotional wreck on th inside. I was just hoping to get feedback from anyone else who may have had a similar situation. Once again, thank you for your response.

 
Old 02-11-2008, 05:39 PM   #4
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Re: High Grade Dysplasia, Possible Cancer

You're welcome. I am sorry your first doctor wasn't more aggressive and/or didn't know what he was doing. Your paps say ASCUS (usually not a huge deal) yet your colpos are more than one grade higher = your doctor isn't getting good samples or the dysplasia wasn't entirely removed by leep or it was, but came back quickly.

Get to a gyn-onc and maybe a second gyn-onc asap. I think you need more than one opinion right now and from a specialist too. First, a gyn-onc needs to determine which grade the dysplasia is, and where it is--is it confined to one or two spots on the ectocervix, or is it in more than two quadrants of the ecto, is it in the canal (endocervix), is it confined to cervix, and so forth.

Honestly, it doesn't seem so likely that the occasional 1-2 cigs would push you into severe or CIS or invasive, but every woman's body is different and maybe you are just really sensitive to smoking. And of course, never pick one up again, in fact try not to be even around secondhand.

Are you taking BCPs or other oral hormonal stuff? If you are, stop that now. For a lot of women cervical dysplasia is very hormone-sensitive. In fact lots of lesser-grade dysplasias naturally regress when the woman quits oral contraceptives.

Finally, there is a trachelectomy option which is no longer as "radical" as just 5 years ago. There is at least one woman who had a healthy daughter post-trach, she used to post here some time ago.

In the meantime start vitamins and supplements, I know doctors say it's bs, but my feeling is if it can't hurt, why not try it? It can help you (immune system boost) through recovery of whatever path your and your doctors decide to take. Just look forward, and know things can work out.

You're very lucky to have a great husband, but as a young woman of course I understand what must be going through your mind and how much this stresses and hurts you.

I really wish you all the best.

Last edited by BE 123; 02-11-2008 at 10:30 PM.

 
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