Severe Dysplasia / CIN III

Hi! I am new to this board and I apologize if my message appears twice. I wasn't sure if I did it right the first time so I sent it again.

Here's my story: I was recently diagnosed with Severe Dysplasia/CIN III following a colposcopy and biopsies. My doctor has scheduled a cold cone biopsy (conization) on November 20, 2000. Because I am not interested in saving my reproductive organs, my doctor did say that a hysterectomy would have been a viable option EXCEPT for the fact that he was not comfortable with the extent of his diagnosis. During the colposcopy he was unable to do the ECC (curettage) because of excessive bleeding. Therefore, he is unsure if the abnormal cells extend up into the inner canal. He needs to do the conization with pathology to determine that before he proceeds. Has anyone had the conization and then a hysterectomy? Is there a required "waiting period" between procedures? I am worried that the conization may take care of the dysplasia NOW, but I will still have that anxiety every time I go for my Pap. I already had cryosurgery once and then years later had severe dysplasia. I would love to hear other stories. Good or bad, I would like to hear how others fared with these procedures and diagnoses. Thanks for sharing your stories with me.

SARA

Hello, Sara and welcome to the Hystersisters website. You will find so much support and helpful information here as I have since signing on in September. I wanted to respond to your post as I was pretty much in your shoes beginning 9 years ago. In the fall of 1996, I was diagnosed with severe dysplasia while pregnant with my now 8 year old daughter. They were not able to treat me until after her birth in 1997. In 1997, a colposcopy with biopsy confirmed the severe dysplasia and I then underwent a LEEP procedure -which removes a coned section of the diseased cells from the cervix. From that point, I then had Paps every 6 months (insist on this or possibly 3-4 months if that makes you more comfortable emotionally). In 1998, my husband's insurance changed and the new clinic felt I only needed Paps once a year (BIG MISTAKE!). My Paps came back inconclusive as they did not get samplings (twice) of interior cervical cells. In August of this year, they finally took a good Pap - I received a call a week later on a Friday that there was cancer. That following Monday, I had a colposcopy and biopsy - which confirmed invasive cancer of the cervix. I then underwent tests to rule out spread to nodes and other organs - and then was scheduled to meet with an oncologist gynecologist. He recommended I undergo a radical hysterectomy (everything out including my appendix and the upper section of my vagina) as well as lymph node dissection of nodes in my pelvic region and up by my aorta. This was completed 10-11-00. I now await meeting with my surgeon this Wednesday to hear the final pathology report (hopeful that it has not spread to nodes) and to hear about the radiation I will need to undergo to destroy any microscopic cancer cells within the vaginal wall. I feel a lot of this may have been avoided if my clinic had been more proactive with Paps and early detection - especially with my medical history. I can't impress on you enough to be very assertive with your gynecologist to follow you closely so that hopefully you can avoid major surgery. Ask lots of questions and make sure they are completing thorough Paps. You do have cause for concern, but let your voice be you strength in demanding quality care for yourself. I wish you all the best and hope the conization will take care of the dysplasia. If you would like, you can e-mail me at pattiskidsrno1@aol.com for more questions, etc. My prayers are with you for complete healing of the dysplasia and that it will go no further than this!

Hi sara
I had the cone biopsy done on 08/10 and the dr found invasive cancer than I went to see a gyn/onc who performed a radical hysterectomy I had to wait 5 wks after the cone biopsy before they would do the surgery. the worst part is waiting for the results, than waiting for surgery and than waiting for pathology results again it feels like for ever and now I am five wks post op and I am already forgetting about the nightmare I was very lucky my pathology report was good And I needed no radiation. thank God
Debby

Sara

I am in just about the same boat as you are. On 9/3 my pap came back as invasive cervical cancer had the colpscopy and it came back as severe dysplasia but they couldn't find my margins so don't know what stage it is and we still don't know if its dysplasia or cancer. SOO on Nov 12th I go for a leep with conization. Sorry I can't answer any of your questions but I just wanted you to know you are not alone and there are a bunch of really wonderful women out here to help you. So anyone have any answers cause I would really like to know too?

i have been told by my doctor yesterday that i have adenocarcinoma in situ again. ihad it five years ago and was treated with diathermy and then a cone biopsy. apparently there are 2 forms of severe dyplasia-squamous(which is the surface or outside of your cervix) and adenocarcinoma in situ (which is below the surface and into the canal of the cervix).adenocarcinoma is apparently more rare and very hard to detect even with a colposcope. i, of course, have the rare case. you start to ask why and how can my body take over like this? my doctor has suggested a hysterectomy as a preventative measure i am sure. he is worried that maybe one day it will develop quickly into something more sinister. i was shocked but am willing to trust him to do the best thing as he sees fit. i am meeting him next week to discuss the surgery and to organise it. what i am really worried about is that when he does the surgery he will find some other area with the big "C"or that my uterus will show cancer after it has been to pathology. does anyone else have these fears? i know i am probably being totally irrational but cannot shake that fear.

hello everyone, in May 2000 I was diagnosed with CIN3 or carcinoma in situ. I had a leep procedure and the results said I had an aggressive type of pre cancerous cells. The recommended treatment was either a cone biopsy or hysterectomy. I chose a hysterectomy because I had no plans for anymore children and I wanted to make sure it was all gone. My operation was on 28th August and I am still waiting to have my first pap at end of Nov. My dr. is confident that it won't return . CIN 3 is still in the pre cancerous stage . I feel better that my uterus and cervix have gone. Good luck to all you girls who wait for pathology tests. I know what waiting for them is like. Just remember there are lots of us here to support you. Love always and please email me if you wish

Hi. I am new here also. I am 29 years old, and was diagnosed with severe dysplasia while pregnant with my now 3 month old daughter. I had a cone biopsy done about a month ago, which showed that I now have carcinoma in situ. The pathology report was wishy-washy. They THINK they got it all but the cancer went to within 1mm of the margins, and one spot was suspicious of microinvasion, but there is no definite evidence to support that. I decided to have the hysterectomy since I am not planning more children and don't want to have to worry about recurrence. I had to wait 6 weeks after the laser surgery, giving me lots of time for second thoughts. How am I going to feel if the pathology report after the surgery reveals that all abnormal cells really were removed the first time? Will I think I made a mistake? Does anyone know what the chances of recurrence actually are?

Hi...I'm new here also, & I put my post in the wrong
topic a bit ago. <I posted accidentally in the bladder topic.> I had a TAH/BSO on Oct. 31st due to extremely heavy
bleeding, lengthy periods, fibroids, polyps, & ovarian cysts, & a pap result which showed severe dysplaysia.
All of my biopsies after surgery came back ok...except for
the cervical one, which states that I had carcinoma in situ. I have been told, & also checked a few internet sites
as well, that they call severe dysplasia carcinoma in situ as well. So..I am just confused, was it cancer or not?? Has anyone else experienced this type of situation?
I don't know what to think, & it scares me to think that it was actually cancer.

Robyn..now that I read your post more closely, I see
that you were told about the same thing that I was.
They call it "pre-cancerous" CIN 3 severe dysplasia, but
then they also call it carcinoma in situ....carcinoma
means cancer as far as I am aware. So, it is cancer, or
is it not? That's what I'm concerned about. I also
had a TAH/BSO 10 days ago, because I wanted to be sure
it was all out of there, whatever kind of cells they were.
When I asked about my path report, I was told that everything came out "fine", & that I was "fine"...which
of course was a huge relief..but I later called back to
ask a question that I had forgotten to ask during the earlier conversation, & as the person was reading me part
of the actual report, I heard "carcinoma in situ of the cervix". My question is..if it was cancer, how could I be
"fine"? Cancer is cancer to me, no matter where it is, & is
always a threat. I, like you, can only hope that there is
no recurrence.

Kaylynn
I had invasive cervical cancer, I had a radical hysterectomy on 09/21 this is the same as TAH/BSO except they remove a small top part of your vagina, pelvic lymph nodes and tissue surrounding your uteris and cervix that they would not normally remove unless they think you have invasive cervical cancer. I am not a doctor but from what I learned carcinoma insutu is cancer cells that have not yet invaded your cervix therefore no risk of it having spread to your lymphnodes or any other parts of your body thru your lymph system or blood stream. That is why you dont need the radical hysterectomy or any other treatments. And I also learned from more than one source that if you have carcinoma in sutu you also have a 100% cure rate so you really have no reason to worry about it.
Debby
TAH/BSO 09/21