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Old 03-28-2006, 11:05 AM   #1
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kitkatD HB User
CIS Prognosis-what's in my future?

Hi all, just wondering if there is anyone else on this board still lingering that is living with Carcinoma in Situ. I got a copy of my biopsy results today & it says the whole thing was filled with the CIS, but that "In so far as can be judged from these sections, the margins of excision encompass this lesion."

Anyway, just wondering if maybe there is someone here with a feel-good story that has had no abnormal paps or colpos/biopsies since being treated. I am getting a bit bummed again.

Could a hysterectomy really be in my future if this comes back? Also, I know this was discussed before, but some sites say CIS is Stage 0 Cancer. Did I have cancer?

 
Old 03-28-2006, 06:28 PM   #2
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ilovesporty HB User
Re: CIS Prognosis-what's in my future?

Hi KitKat! I'm still about 3 months out from my first post cancer followup, but I'll let you know what happens. From what I understand, it is possible (and likely) to have normal paps after CIS. Unfortunately, a hyst is in my near future after trying to have children first.

As far as CIS and the cancer debate... my gyn that dx'd me says it's pre cancer and my gyn-onc says it's cancer. It all depends on who you ask. I don't think there are any clear cut answers.

Take care,
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Old 03-28-2006, 06:50 PM   #3
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Re: CIS Prognosis-what's in my future?

Hi again Sporty, thanks for the response! My BIL, also an OB/GYN, said it was just precancer & nothing to worry about since he says he's pretty sure my GYN got all of it.

All the wishy-washiness of "it is" or "it isn't" is driving me cuckoo, but I guess treatments are the same for early cancers, so maybe it really doesn't make a difference.

I found some very reputable sites (Stanford, American Cancer Society, to name a few) that did say on the FIGO staging that it was a very early cancer, but then you hear GYNs say it isn't, so it is all pretty confusing.

Anyhow, do you still think a GYN/ONC is still a good choice for follow-ups or should I just stick to a regular GYN? I am leaning toward seeing a GYN/ONC just because they are so used to seeing only this. My GYN right now specializes in INFERTILITY, so even though, this is a relatively 'mild' problem, that doesn't make me feel any better.

Ok, thanks for listening! Get off the computer & go make a baby!

 
Old 03-29-2006, 12:44 AM   #4
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freesoul HB User
Re: CIS Prognosis-what's in my future?

Hi KitKat,I just wanted to wish you lot's of luck in whatever decision you make.It may be a good idea to follow up with a gyn/onc,as they are able to know exactly what to watch for and will follow up with you more often.

 
Old 03-29-2006, 04:35 AM   #5
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Re: CIS Prognosis-what's in my future?

Thanks for your input, freesoul! I am already looking into seeing one, just for piece of mind. I know some people may think that is overreacting & that a regular GYN could treat this, but I am neurotic about my health & want only the best. I was thinking it over last night & I just think I could sleep better knowing that I am seeing someone who does this for a living.

 
Old 03-29-2006, 06:23 AM   #6
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Re: CIS Prognosis-what's in my future?

I hope everything goes well for you! I don't think anyone thinks you are overreacting. Better safe then sorry. Good Luck!

 
Old 03-29-2006, 08:35 AM   #7
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Re: CIS Prognosis-what's in my future?

kitkat, you are not overreacting at all. You are doing what you feel you need to do in order to get some peace of mind with this. I went through a year and a half of really bad times because I was only seeing gyn's and I was told that seeing a gyn-onc was unneccesary. It just kept eating away at me, I really felt like I MUST see a gyn-onc, so I took it into my own hands and emailed one. See, up here in Canada it's a bit different system. Technically you need your family doc to first refer you to a gyn (and then that gyn will only see you for the problem you have been referred for, AND the referral is only for a six month period!), then that gyn would refer you on to a gyn-onc. I bypassed that, got my appointment with the gyn-onc, and let me tell you, the peace of mind (and validation!) that I got from that appointment was worth the effort of "being a squeaky wheel". I have to run for now ... I am off to the gyn-onc for a follow up appointment. I will check back in later.

Karen

 
Old 03-29-2006, 05:25 PM   #8
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Re: CIS Prognosis-what's in my future?

Thanks for all the wonderful replies! It makes me feel so much better & less neurotic.

Karen, good luck with your gyn/onc appt.! I will be thinking of you & hoping your appt. goes well. What kind of follow-up is your gyn/onc doing? Is this for a pap? Sorry, not trying to be nosy. Just trying to see what kind of follow-up you have to go through! Take care!

 
Old 03-29-2006, 05:44 PM   #9
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Re: CIS Prognosis-what's in my future?

thanks for the well wishes. My appointment went well. The gyn-onc was unable to make the appointment, so I saw a resident instead. I am okay with that, as I figure because they are still "learning", they are extra patient, extra inquisitive and more likely to explore things. And I was right The follow up was basically to see how I was recovering from the hysterectomy in September, discuss any issues I was having, and a vault smear. I was given a referral for an ultrasound due to some right side pain, and she said she could feel my right ovary was prominent and a bit enlarged. I'm not too concerned though.

I will go back to my family doc for my remaining follow up smears, every six months for the next few years, then back to a yearly schedule. If anything comes back abnormal at any of these smears, I will then go back to the gyn-onc.

Glad you're feeling better. Remember this is all a process you have to go through, and expect that somedays you are going to feel really positive, others not so much, and most days, generally very inquisitive as to what has happened with your body. thanks again for the good luck wishes!

Karen

 
Old 03-29-2006, 05:46 PM   #10
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ilovesporty HB User
Re: CIS Prognosis-what's in my future?

KitKat,
Definitely followup with a gyn-onc (IMHO!). Mine is going to follow me for at least the next 5 years, which is what he says he does for all of his patients. I definitely don't think you're acting crazy. I'm sure no one does!
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Old 03-29-2006, 06:11 PM   #11
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Re: CIS Prognosis-what's in my future?

Karen, sorry you are having problems with your ovary. I wonder if it's a cyst? Hopefully, that will resolve on its own. Goodness, we all know you don't need more to worry about! Please keep us updated on the upcoming ultrasound!

Sporty, thanks for giving me your personal long-term follow up plan. I know I shouldn't feel crazy, but it is hard when you hear people, particularly family members (ahem, sister & BIL-who is an OB/GYN) say that all this worrying is unnecessary & that everything will be fine. They're SO sure all of it was taken & that no other treatments will be necessary. They have flat-out told me that I shouldn't read too much into my condition. Their attitudes in particular are what makes me 2nd guess myself & make me think I am blowing this out of proportion. My sister has said, "Stop thinking you might have cancer! It's benign & PRECANCEROUS!" Gosh, she talks to me like I'm a bad little child who asks too many questions!

I KNOW it could be worse. My GYN has made that clear, so I count myself extremely lucky, but on the other hand I really do want the best care out there! Who wouldn't?

So basically, my support system IS this board. No one really understands how I feel except for all of you who are going through the same thing--wondering, worrying, just trying to live a normal life, you know? I am just thankful all of you are here for me! I would feel so alone without being able to talk this through.

THANKS TO EVERYONE WHO HAS HELPED ME GET THROUGH THIS!

Seriously, sometimes I have felt like crawling under a rock because I feel so embarrassed by other people's reactions. I know it's stupid, but that's when I pop onto this board!

 
Old 04-01-2006, 06:20 AM   #12
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Re: CIS Prognosis-what's in my future?

KitKat,
No problem! That's what we are here for - to support each other. Many of us have *issues* with support from friends and family at home. It's definitely not that they don't care, but they just don't get it. That's why *talking* with people who do get it is so important. My DH doesn't understand why I'm still going to many of the cancer boards now that I'm NED, but it's still so helpful if I have any followup questions or want to help anyone else. Karen32 and I are members of another group where the support is just amazing! There are women there who are many years post-dx and still just want to help others dealing with similar situations. Keep doing what YOU feel is right and try to not worry what others think. It is your body afterall!

Take care!
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