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Old 02-27-2011, 04:34 PM   #1
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just diagnosed with severe cervical dysplasia and terrified!

Hi, I'm new here. My name is Laura, I'm almost 26 and have 3 children.

I was diagnosed friday with severe dysplasia and am so scared. When the nurse called me she left a voice mail that said to call her back for my results and that it was "nothing urgent" so I assumed she was going to tell me what the doctor told me during my colposcopy "it doesn't look bad and I'm guessing it will probably come back as A Typical sells of undetermined significance just like your PAP indicated" So even though we were out with the kids at a museum I stepped outside and called her back.... she told me about the dysplasia and acted like it was no big deal.... she was very short w/ me and when I started asking questions she cut me off and offered to send me a pamphlet! She scheduled me for a LEEP on April 14th and that was it.

I used to work for an internist as a medical assistant and the first piece of advise I always gave patients who were diagnosed w/ an illness was not to start googling it and just wait until they spoke w/ the doctor. So of course the first thing I did was pull out my Iphone right there in the museum and start googling it

I read a lot of horror stories about how painful the LEEP is.... Stories about women having miscarriges and pre term deliveries after LEEP.... and even worse stories of women who have had LEEP and still up either having cancer or getting cancer.

I have a bunch of questions and I know I sound parinoid..... but I am! When I see pre-CANCER it scares me.... I know I should be happy that it was caught early and I am but I'm still terrified.

If any one has a story to share, some advice, or answers to my questions I would greatly appreciate it.

I have read that some times even though the biopsy says severe dysplasia it turns out being cancer any way.... how common is that? would that mean very early stage cancer? or could I have full blown invasive cancer and not know it?

I recently moved and am not super happy with my new gynecologist, I'm thinking about either a. calling my old gynecologist and driving the two hours for an appointment or b. contacting a gyn/oncologoy dr what would you all suggest?

I already have 3 children, we would like one more but I would rather be healthy for the 3 I have.... part of me thinks that a simple hystorectomy would be the best thing to do so that I don't risk the cancer growing back.... am I just being irrational?

I'll stop rambling now.... I'm just scared and figure getting in touch with people in my situation would probably be better for me then googling this and reading all the horror stories.

TIA!

Laura

 
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Old 02-28-2011, 10:28 PM   #2
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Re: just diagnosed with severe cervical dysplasia and terrified!

I think it is normal to be nervous. I have 3 kids also and I am 29. I have HGSIL with moderate dysplasia and I got the results after my LEEP and got me results myself so im waiting for my dr tomorrow before i know what shell recommend. My friends mom, who is a nurse recommended me to have a hysterectomy. I think you are right, it is better to be here for the 3 kids you have than risk your health by not following the dr.'s orders. I am very nervous too. I have my apt. tomorrow so i'll know what she recommends.I cant lie the LEEP was somewhat painful but they use a numbing agent called a cervical block and it is not a very long procedure and it's worth it to get rid of those cells. I think the key thing is to try and not be nervous, and stay positive. Like they say, it's not cancer yet and preventative measures is the best we can do. Take vitamins to keep up your immune system up. I heard echinachea is good and lots of vitamin c. I just started that. Well good luck, and take it one day at a time. I know its hard but at least try.That's what im trying to do.
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Last edited by tanya58; 02-28-2011 at 10:30 PM.

 
Old 02-28-2011, 10:41 PM   #3
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Re: just diagnosed with severe cervical dysplasia and terrified!

Quote:
Originally Posted by katm4110 View Post

I recently moved and am not super happy with my new gynecologist, I'm thinking about either a. calling my old gynecologist and driving the two hours for an appointment or b. contacting a gyn/oncologoy dr what would you all suggest?
I suggest going to a gyn/oncologist 100%. At the very least you get a honest knowledgeable second opinion.

Quote:
Originally Posted by katm4110 View Post
I already have 3 children, we would like one more but I would rather be healthy for the 3 I have.... part of me thinks that a simple hystorectomy would be the best thing to do so that I don't risk the cancer growing back.... am I just being irrational?
Glad you have your three wonderful kids. You are very blessed.
I am in my 20's. I got the LEEP. I got put under for the procedure so it wasn't that bad. You sound rational to be thinking of all your options. Even if I had all the kids we wanted for our marriage I would be hesitant to get a hysterectomy at this age unless absolutely medically needed. Talk to your gyn/oncologist.
Wishing you the best.

Last edited by seavegetables; 02-28-2011 at 10:51 PM.

 
Old 02-28-2011, 10:50 PM   #4
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Re: just diagnosed with severe cervical dysplasia and terrified!

Thank you all so much! I'm just glad I'm not alone, when I express my fears to someone who has never been through it they look at me like I'm a paranoid mess.

Called the OB that did my colposcopy and biopsy and asked some more questions (thanks to all of the wonderful info on this board!) and she said that I have CIN 2 to CIN 3 which I'm guessing is moderate to severe? She also said that during the colposcopy she only saw one area of abnormal cells.... she told me that my ECC was fine.... not sure what that means.
I'm still looking for a gyn/onco that will sees so far the two I called said they only see patients who have been diagnosed with cancer... so is it hard to get in to one to be treated for dysplasia?

 
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Old 02-28-2011, 10:56 PM   #5
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Re: just diagnosed with severe cervical dysplasia and terrified!

Quote:
Originally Posted by tanya58 View Post
I think it is normal to be nervous. I have 3 kids also and I am 29. I have HGSIL with moderate dysplasia and I got the results after my LEEP and got me results myself so im waiting for my dr tomorrow before i know what shell recommend. My friends mom, who is a nurse recommended me to have a hysterectomy. I think you are right, it is better to be here for the 3 kids you have than risk your health by not following the dr.'s orders. I am very nervous too. I have my apt. tomorrow so i'll know what she recommends.I cant lie the LEEP was somewhat painful but they use a numbing agent called a cervical block and it is not a very long procedure and it's worth it to get rid of those cells. I think the key thing is to try and not be nervous, and stay positive. Like they say, it's not cancer yet and preventative measures is the best we can do. Take vitamins to keep up your immune system up. I heard echinachea is good and lots of vitamin c. I just started that. Well good luck, and take it one day at a time. I know its hard but at least try.That's what im trying to do.
I had my GP call me in some Xanax to take before the procedure he said that should help me relax.

Thanks for your reply.... I just needed to get it all out... my poor husband has to be tired of hearing me go over this... let ms know how your follow up goes!

 
Old 02-28-2011, 10:57 PM   #6
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Re: just diagnosed with severe cervical dysplasia and terrified!

The ecc is an endometrial curretage to test the cells higher up in the cervix. That being negative is a good thing.The cells have not invaded the upper cervix.From what I understand you can see a gyn/oncologist even for pre-cancer. Which is what dysplasia is. oncologists also see patients for high risk, which is what we are.I hope that helps!
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Last edited by tanya58; 02-28-2011 at 10:58 PM.

 
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Old 02-28-2011, 11:04 PM   #7
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Re: just diagnosed with severe cervical dysplasia and terrified!

Thank you I know and Xanax a good idea I should have gotten some. I know it sounds scary but my MD said not to jump. The Xanax should help you to relax. If someone can be there with you thats great. my boyfriend was with me. I think he squeezed my hand more than I did his. Sometimes thinking about it can be worse than acually doing it. At lease that's what i have noticed. Thank you. I appreciate it, it's hard talking to people that don't know anything about it. And I have not told my family, I dont want them to worry. I will let you know what happens tomorrow. Keep me updated.Stay strong and try and take it day by day. I am working on that too.
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Last edited by tanya58; 02-28-2011 at 11:05 PM.

 
Old 03-03-2011, 03:11 PM   #8
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Re: just diagnosed with severe cervical dysplasia and terrified!

Hello,
I am also new here, I was diagnosed with mild stage 1 dysplasia Sept2009. I went for a Colposcopy and was told my immune system would probably take care of it by itself, and to come back in 6 months. When I returned I had spread to stage 5 severe dysplasia. It was the scariest moment I have yet to have. With in 4 days - before my biopsy results had returned, I was in for a LEEP procedure. Good news was I didnt even have time to psych myself out.
The LEEP was painless, but I did start to bleed heavily on the exam table, and they had to get a second machine out to cauterize me..while I was AWAKE!
The Dr. was great, and removed the entire surface of the cervix as well as all the surrounding tissue, to make 100% sure it didnt spread. I have already had my 6 month post follow up and it came back perfect. I go back in 3 months for another check up, and every 6 months for aprox 3 years.

I fully understand your fears!

 
Old 03-06-2011, 01:09 AM   #9
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Re: just diagnosed with severe cervical dysplasia and terrified!

Thats very good,im glad it worked out good for you.It gives me hope my hematologist that i used to work for said get the cone biopsy to make sure the margins are clear, and now idk if i should trust my gyn,cause my specialist is saying i need a 2nd opinion and for it to be a gyn/oncologist.I am going to see one the 21st,just not really excited about surgery. But i trust her and i would rather have surgery than cancer.Sooo, i hope i could help someone in some way...and i appreciate everyones help.It's nice to talk to people about this that truly do understand.
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Old 03-06-2011, 05:52 PM   #10
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Re: just diagnosed with severe cervical dysplasia and terrified!

Quote:
Originally Posted by katm4110 View Post
Hi, I'm new here. My name is Laura, I'm almost 26 and have 3 children.

I was diagnosed friday with severe dysplasia and am so scared. When the nurse called me she left a voice mail that said to call her back for my results and that it was "nothing urgent" so I assumed she was going to tell me what the doctor told me during my colposcopy "it doesn't look bad and I'm guessing it will probably come back as A Typical sells of undetermined significance just like your PAP indicated" So even though we were out with the kids at a museum I stepped outside and called her back.... she told me about the dysplasia and acted like it was no big deal.... she was very short w/ me and when I started asking questions she cut me off and offered to send me a pamphlet! She scheduled me for a LEEP on April 14th and that was it.

I used to work for an internist as a medical assistant and the first piece of advise I always gave patients who were diagnosed w/ an illness was not to start googling it and just wait until they spoke w/ the doctor. So of course the first thing I did was pull out my Iphone right there in the museum and start googling it

I read a lot of horror stories about how painful the LEEP is.... Stories about women having miscarriges and pre term deliveries after LEEP.... and even worse stories of women who have had LEEP and still up either having cancer or getting cancer.

I have a bunch of questions and I know I sound parinoid..... but I am! When I see pre-CANCER it scares me.... I know I should be happy that it was caught early and I am but I'm still terrified.

If any one has a story to share, some advice, or answers to my questions I would greatly appreciate it.

I have read that some times even though the biopsy says severe dysplasia it turns out being cancer any way.... how common is that? would that mean very early stage cancer? or could I have full blown invasive cancer and not know it?

I recently moved and am not super happy with my new gynecologist, I'm thinking about either a. calling my old gynecologist and driving the two hours for an appointment or b. contacting a gyn/oncologoy dr what would you all suggest?

I already have 3 children, we would like one more but I would rather be healthy for the 3 I have.... part of me thinks that a simple hystorectomy would be the best thing to do so that I don't risk the cancer growing back.... am I just being irrational?

I'll stop rambling now.... I'm just scared and figure getting in touch with people in my situation would probably be better for me then googling this and reading all the horror stories.

TIA!

Laura

I know it's scary. The unknown is always scary.
I've never had LEEP, but I had cervical dysplasia when I was sixteen (over 20 years ago), and it was treated with cryotherapy, which was the standard treatment for mild dysplasia at that time (cone biopsies were done for more severe cases).
I was scared to death by all of it, but I got through it.
All you really have to do is go in, lay there, and let them do stuff to you.
It's not very difficult, in the end.
Trust your doctor. Remember, your doctor understands what's going on, even if you don't, and has performed this procedure countless times. It's not always imperative that we do understand every last detail of our medical treatment, I don't think... although some would disagree. Some people find it empowering to learn as much as they can. I would've found that overwhelming and frightening, at least at that time.

My treatment worked, and the dysplasia has never returned, not once in all these years.
I've had two healthy children and zero miscarriages, so the treatment did not compromise my ability to have children.

I think your treatment will work too. I think, in a way, you just have to surrender control in these situations and let the doctor do what's necessary.
I know that LEEP is an incredibly common procedure, and while I can't give you a firsthand account of how uncomfortable it is, I don't think I've ever read or heard that it's terribly painful. I think you'll be completely numbed during the procedure and won't feel anything, and I haven't read that the recovery is long or painful, either. In fact, a number of women here have said that they went back to work the following day and were fine.

So please don't be too scared. As far as I know, LEEP is extremely effective as both a diagnostic tool and a cure, in most instances.
For many women, one LEEP is all it takes, and their troubles are over.
But even if that's not true in your case, the LEEP will give your doctor a clearer picture of how bad your dysplasia is, and what further steps need to be taken to resolve it.

Dysplasia is super-common, but cervical cancer is rare (here in the US), and that is entirely thanks to PAPs and treatments such as LEEP, which remove abnormal cells before they have a chance to turn into cancer.
So don't look at it as something scary. Look at it like, "I'm being proactive, doing what I need to do in order to protect myself from cancer in the future."

Good luck!

Last edited by Kali333; 03-06-2011 at 05:54 PM.

 
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