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Old 02-07-2009, 06:16 AM   #1
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Moderate to Severe Dysplasia - Now What?

I have Mod to Severe Dysplasia - the LEEP procedure didn't work and I'm not being monitored just through PAPs every 3 months. I want children so am not being treated aggressively. I'm worried however that this will get worse and turn cancerous. I'm going to try to get apts with fertility doctors and a obgyn/oncologist to get their opinions. Kids were going to be in the picture in maybe 2 years... I'm scared to wait that long.

Anyone else have a LEEP not work - how do you know how long to wait - who can you see to get an answer... my dr. tells me if I want kids to do it soon, but won't tell me what soon means.

 
Old 02-07-2009, 08:10 AM   #2
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Re: Moderate to Severe Dysplasia - Now What?

I'm sorry to hear about your diagnosis. I think going to a gyn/onc is an excellent suggestion. There is a procedure that will remove the cervix and leave the uterus intact for some women. I think another member will be popping in here to give some information about it.

 
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Old 02-07-2009, 08:26 AM   #3
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Re: Moderate to Severe Dysplasia - Now What?

Hi there --

Pickel is right -- I will give my two cents, but have to dash out the door right now. I will give a more detailed response later this afternoon, but in the meantime, check out some of my previous posts.

I am in the process of setting up surgery to have a procedure called a trachelectomy, which removes the cervix only and leave the uterus so you can still have children. Pregnancies would be monitoried closely, and birth would be by ceasarean section (and yes, women with trachelectomies do have an increased risk of miscarriage and premature birth, but so do women with LEEP/cone procedures, especially those who have had multiple procedures). However, the upside is that it is not as radical surgery as hysterectomy, and leaves a good possibility of a successful pregnancy. I am having a trachelectomy because unfortunately I do have invasive cervical cancer, so this is my only option right now. But I have heard of people having this procedure (as well as a hyst -- which neither you nor I want!) for recurrent problems with dysplasia and recurrence after one or more LEEP/cone procedures.

I promise I will write more later! Feel free to post any questions you may have, and I will try to answer them. I'm no doc, but due to my situation I've obviously been keeping up as much as I can with all the info I can get (from online as well as from my oncologists) regarding this procedure.

More later!!

 
Old 02-07-2009, 01:48 PM   #4
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Re: Moderate to Severe Dysplasia - Now What?

Hi again --

Can you give me a little more info? Do you know if your paps are showing squamous or glandular cell problems (although I suspect it's squamous)? When was your LEEP, and how many abnormal paps have you had since? Have you had a colposcopy showing that you have CIN II/III, or was this diagnosed just from the pap?

I think the term *soon* is a relative term (regarding your doc telling you to have kids), and depends greatly on your age and previous medical history. My onc told me "we are saving your uterus so I can use it" -- and they suggest I do it *soon*, since I'm now 39. His definition of soon was originally wait one year to watch for recurrence, then get going....but at my last visit (last week) we talked about while he was in there removing the cervix and some lymph nodes, also removing some ovarian cysts (which do not pose a health risk, but I figured if he was in there, might as well get rid of the cysts!!), and he told me not to worry about the cysts, since fertility drugs are better at overcoming any anovulation due to cysts, or that he could drill into the ovaries to release more eggs (first time I ever heard of that -- he said it was an "old fashioned" way of doing things) and to see if I would conceive on my own this summer...mind you, I haven't even had my trachelectomy yet, which would put "this summer" at roughly four months post my surgery.

You might also want to consider egg retrieval at this point, depending on your age, as well as potentially freezing embryos. I don't know what your situation is relationship-wise, and what your husband/significant other thinks of this as a possibility, but it's always something to keep in mind. Hopefully though you won't need to worry about any of this, and they can manage your status right now so you can carry your babies and keep your parts as long as you need and want them!!!

Thanks to Pickle for giving me a heads up on this thread -- I usually only check the cervical & ovarian cancer board, and would have missed this thread!

Last edited by Mod-S4; 02-07-2009 at 07:00 PM. Reason: Text removed to avoid possible multiple posting. The cancer board should be used by those with cancer. Thanks.

 
Old 02-08-2009, 07:13 AM   #5
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Re: Moderate to Severe Dysplasia - Now What?

Hi, thanks so much for replying to my post. My PAP in June of 08 was abnormal. I then had a colposcopy, biopsy which showed it was worse than they thought. I was then scheduled for a LEEP, which I had in November 08. That was also worse than initially thought showing CIN II/III of both the exocervix and endocervix. My doctor said he didn't think the LEEP removed all the abnormal cells.

So I just had my first follow up PAP at the end of January and it was confirmed that the LEEP didn't remove the abnormal cells... I was told the results show that things are the same, not better but not worse. I have the paperwork from the LEEP and it says 'chronic cervicitis and squamous metaplasia' so I'm not sure if that's high or low grade.

I am 30, my boyfriend and I were thinking kids in 2 years or so. We have discussed getting my eggs froze...or I have, I don't think he understands all of this, or how greatly I'm effected by all of this.

This week my plans are to talk to my insurance to find out about getting a second opinion and seeing a fertilization doctor as well as if there is a gyn/oncologist. I just don't know if I'm over reacting with all of this or being proactive. Getting all this information in less than a year just makes me think of how quickly things can get worse, and I don't want to lose out on the option to have my own children.

 
Old 02-08-2009, 11:47 AM   #6
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Re: Moderate to Severe Dysplasia - Now What?

Hi there --

I'm glad to hear you are staying on top of this, and that you are being monitored every three months. I don't think you are overreacting at all! It is important to stay on top of your condition, and to think ahead as far as options. I know how you feel about things going bad so quickly. One year ago I didn't even know I had HPV, although part of my problem was putting my trust in an ob/gyn who is not up on her stuff as far as HPV and cervical cancer. I liked her very much, always kept up with my appointments, and trusted that she knew what she was doing, despite her always rude office staff. Now I wish I had changed practices much earlier, because a better doctor should have been able to help me sooner and give me better advice. Botton line: a second opinion is always a good idea! Sounds like you are doing all the right things to make sure you get the best care available -- and that's a good thing!

Best of luck, and do let us know how you are doing!!

 
Old 02-10-2009, 03:25 PM   #7
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Re: Moderate to Severe Dysplasia - Now What?

Thank you. I've been trying to read up on your posts to understand and keep up with what is happening with you as well.

I have my 'second opinion' appointment with another ob/gyn scheduled for Feb. 26. I'm waiting to get all my test results, which I want a copy of anyways, for the 'second opinion' doctor. Part of me hopes she tells me my first doctors opinion is what she recommends also because then at least there are 2 people who agree on something. If I get a different opinion I don't know where to go...I guess for a 3rd opinion!

My boyfriend is not understanding why I am upset about all of this.. and it is making me feel worse. I just think he doesn't get how serious this can be and how much it affects BOTH of our lives... is there any good info out there directed to guys? I have yet to find anything. I don't want to deal with this alone or have him get frustrated that I'm upset.

 
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