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Old 10-18-2006, 05:29 AM   #1
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Cervical Carcinoma in Situ

I posted an introduction thread a few minutes ago, but I wanted to ask another question. Has anyone else had cervical carcinoma in situ? Do women get past a CIS diagnosis without hysterectomy?

Can this ever just be OVER, and me with all my body parts? I need assurance.

Thanks.

 
Old 10-18-2006, 01:38 PM   #2
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Re: Cervical Carcinoma in Situ

I had CIS and then had a simple LEEP procedure in June and had a normal Pap last month. CIS is extremely treatable.

 
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Old 10-18-2006, 01:51 PM   #3
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Smile Re: Cervical Carcinoma in Situ

I was diagnosed with CIS also. I had cone surgery 2 weeks ago. Cone surgery is when the doc gets a biopsy and removes the bad places as well. My biopsy came back good the cells were at the stage before cancer but the doc removed them all.

 
Old 10-18-2006, 01:52 PM   #4
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Re: Cervical Carcinoma in Situ

Hi Sippy.

I had CIN II/III with glandular involvement on my biopsy – waiting for LEEP pathology to come any day.
So, I can understand how you feel. Some use CIN III/CIS (your condition) interchangeably.

Timber is 100% right. DO NOT let someone talk you into hysterectomy - esp. not at this point. CIS is very treatable - PLUS, many don't become invasive, even if some dysplastic cells persist (sometimes they become lower grade).

Well, there are a number of women who were cancer-free after CIS after LEEP or Cone, at least for 2-5 years – that I’ve seen on the board. Not too many – however, this can be because once the PAPs are back to normal, they just well, get on with their lives.

There are some studies you can read on the net, however – that give you an excellent idea – as to what is the “cure” and recurrence rate for CIS. Just go to Google or such and search for “recurrence rate of CIS III”, or “progression of CIS III to cancer”, etc.

The thing is, each case is different, so NO ONE (this is the most important thing to remember) can tell what will happen to you (me, anyone else here).
Statistically, however – the 2-5 year “cure” rate is between 67% and 90%, for CIN III and CIS, after 1 LEEP procedure.
I found that THREE risk factors that contribute to future recurrence : the presence of high-risk HPVs (16, 18, 52), involvement of glands (ASGUS), and whether endo-cervical (inner) area is impacted.
The risk factors are especially crucial if all 3 are present.
Some also say margins (clear or not) contribute to risk, some say not important.

I’m a net junkie and I found a myriad of resources which help me learn about cervical dyspasia/cancer and the expectations I may have for myself.
This is a good one: [url]http://screening.iarc.fr[/url]

Check it out! Even includes details on colpo – photos, classification, etc. All and everything.

I URGE you to educate yourself on the subject before you make any decisions. After some careful research, I found that most hysterectomies cause more problems then solutions – in the case of cancer, esp. with small cell or gland types. For periods so heavy that they require blood transfusion – maybe. Cancer – not so much. I was also astonished to find out how many women get this crippling surgery at the drop of a hat.

When I read about personal experiences of cervical cancer/hyster patients, it’s hard to gage the gravity of this cases because often it is a psycho-babble about the greatness of the “good Lawd” and how they are happy just to hang on for their 5 children, etc, etc.

I am not a medical professional, but I know quiet a bit about health. You can not cure cancer by removing a vital organ. If it was meant to spread, it will spread. I followed an alarming number of cases that started with diagnoses with CIN/CIS, went on to LEEP/CONE, to hysterectomy, to rads/chemo, to pelvic exterenomy followed by more chemo… well, that tends to be the end of it.

Personally, I’m NOT getting a hyster. Ever. Even if it turns out that an MD recommend one.

Not because I’m a stubborn ignoramus (though you can’t rule it out , but simply because I see no BENEFIT in it, in this point in life. I’m only 32 – extremely athletic, very active, very healthy, never had anything more then a cold. I am completely asymptomatic for anything – never missed a period, never was late more then 2 days. So if someone offers me a crippling surgery from which some never fully recover, in prospects that it MAY – not will, but MAY, take care of something that MAY be ok on it’s own and only has a 30% chance of a future malignancy, why should I even consider?
If I can have a few years – mostly like decades, of high QUALITY life that I have now, why not take it – over a CERTAIN year or so of suffering with life-long adverse effects?

I’ve learned that taking certain supplements, getting plenty of sleep, cutting out sugar and upping your Ph level may be all you need, and I’m already making changes towards that. Will it work? Not necessarily. Will it help more then taking out my uterus/cervix? You’re freakin’ bet on that.

I have 100% control over what I do. I have zero control over surgeons, nurses, hospital infections, meds, negligence, etc – do I now?
Am I prepared to even consider a possibility that some bumble***** will cause accidental nerve damage and I’ll end up with urinary incontinence for life??
Are you kidding me.

Taking the uterus out is not a cure for cancer, and I’m kind of ticked off that many MDs led people to believe it is. It’s a cure of a symptom, which are dysplastic or cancerous cells. Does it eliminate the underlying causes for cancer (HPV, low cellular oxygen levels, etc)? NO. Does it weaken your immune system and aggravates the problem? YES.

My biggest issue is that cervical cancers are often under-diagnosed. By the time you’re told to get the hysterectomy, it may be too late anyway. The doctors may or may not stage the case correctly. It often seems to be the case. Yes, there tends to be a higher number of women getting cervical cancer today. Or – is it that because MORE are diagnosed? There are many invasive cervical cancers revealed on forensic pathologies of 70-80 yr old women who were NEVER diagnosed, and die of other causes… so what does that tell us, as far as survival?

Sorry, I’m venting here I am too, frustrated. But I never take anything as a given. It could be too early for me but I like to do my research in advance and make plans accordingly.

I wish all well and best of luck of course, with whatever you chose. My opinion is just that of course; I’m not saying to disregard your doctors. Just don’t trust anyone automatically before you check out the facts or think that’s when then say “it’s your best option”, it really is.

Thoughts anyone? Comments?

 
Old 10-18-2006, 03:37 PM   #5
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Re: Cervical Carcinoma in Situ

I was diagnosed with carcinoma in situ involving the endocervical glands and had a cone biopsy in August. I was told that I had very advanced and agressive disease, so they took out almost the entire cervix. I also had my tubes tied (no cervix - no pregnancy), a D&C, and an endometrial ablation (for the unGodly bleeding I was having). This was all as an alternative to the hysterectomy. My gyne likes to avoid doing them whenever possible, so we tried this little alternative cocktail of treatments. Well, the biopsy came back with moderate dysplasia to the edges. I had a pap, colpo and ECC's done in September and the ECC's came back with atypia (step before dysplasia). We are doing a wait and see approach. Hysterectomy was offered...I am just not ready...and my oncologist respects that and feels this approach is fine right now. And since the REALLY bad stuff is out of me and this fresh batch is at ground zero, I am hoping I have alot of time before I am forced to make that decision. I will see my oncologist every two months for the next two years for pap/colpo/ECC and it is my hope as well as his that this stays under control for many years to come. So, yes, there are lots of us out here who had carcinoma in situ and are still intact!! I actually think I am one of a few who didn't get a clean biopsy after treatment. Hysterectomy is not inevitable. Keep the faith!!

 
Old 10-18-2006, 03:39 PM   #6
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Re: Cervical Carcinoma in Situ

Thank you SO much! Both for the encouragment and for all that information in the above post. I totally agree--I see hysterectomy as an absolute last resort. It's not even about fertility to me; it's about not messing with what is not broken. I tend to feel that if you start removing parts, you're really flirting with exaserbating the problem, not fixing it.

Anyway, the pathology report came back today and the phrase my doctor used was, "they can't guarentee the margins." I guess both margins are in question--the endocervical canal and the width margin. So.... of course he brought up the "H" word, but I said not yet and he is fine with waiting and doing a more extensive LEEP in a few weeks. Hopefully that will get the nasties out. In the meantime, I'm planning to overhaul my diet and my outlook. I'm going to be upping my vitemins and trying to relax more. I HAVE to believe that this is something I can combat without a hyseterectomy. I'm so relieved to have found a place where people can understand what I'm going through and engage in dialogue about it. What a Godsend!

Niarules, I'm going to be exploring those Google searches the first chance I get.

 
Old 10-19-2006, 07:14 AM   #7
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Re: Cervical Carcinoma in Situ

Sharon – good for you! Glad to hear you have a doctor that cares about a patient as oppose to “case management”.

Well, I never gave birth – and probably won’t, esp. after this dysplasia scare, but I’m certainly not giving up my uterus.

Wait and see is a great approach IMO, since you had so much done. “Atypia” means nothing – or actually “benign atypic cells” - unless confirmed otherwise. Atypic cells can be also due to the rapidly growing regeneration post-op. Best of luck.

Can you tell me how your Cone went and how the recovery was after? Or anyone who had a Cone with majority of tissue taken out – recovery?
I’ve also heard of trachelectomy as a hyster alternative (removal of entire cervix) but it’s rarely done in US from what I hear.

 
Old 10-19-2006, 09:49 AM   #8
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Re: Cervical Carcinoma in Situ

I agree that hysterectomy is a last result, but if the cancer cells are confined to the uterus then removing them is a cure for cancer because it removes all cells and keeps them from spreading. I'm not sure Niarules understands what cancer is.

 
Old 10-19-2006, 01:09 PM   #9
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Re: Cervical Carcinoma in Situ

“if the cancer cells are confined to the uterus then removing them is a cure for cancer because it removes all cells and keeps them from spreading, because it removes all cells and keeps them from spreading”.

Timber, it’s hardly a cure. A “standard of care treatment option”, but not a cure. This is the biggest misconception about hysterectomy or any surgery.

Yes – if a cancer WAS confined to ANY organ, you could cure it by removing that organ. But, often times, while it appears to be in place, it’s not – which is sometimes discovered during hyster/laprascopy. So by removing it little is accomplished then?

Also, even if provided that cancer was or seemed “confined” to uterus, there are many instances of it recurring in vaginal cuff or other pelvic areas. Is that not true?

I think I have a descent understanding of cervical cancers and their prognosis, some of which is unknown and in the case of adenocarcinomas - most of it is unknown.

I do however think that MDs over-simplify the info they provide to patients.

"You'll get a hysterectomy and your cancer will be removed" is not correct. It may be removed, is more like it.

 
Old 10-19-2006, 01:18 PM   #10
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Smile Re: Cervical Carcinoma in Situ

On oct 3rd I went to the hospital at 7:30 the surgery started at 9:30 I had a general anesthetic. When I woke I had bad cramps the nurse give me two lortab. They helped.I was out of the hospital by 12:00. I had cramping that day and the next. After that I was fine. I started bleeding 4 days after that that lasted 8 days now I have a little discharge. But the doc said he got all of the bad places out so I think it was worth it.I didn't have to take anymore lortab after I left the hospital so the cramping wasn't anything I couldn't handle. My sister had a leep done and the margins weren't clear so they did a cone then the biopsy came back and the margins were clear.If you have anymore questions just ask.

 
Old 10-19-2006, 02:16 PM   #11
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Re: Cervical Carcinoma in Situ

I'm glad to see the info on the cone. Today I told my doctor that that should be the next step. I hope I can have it done within in the next few weeks and HOPEFULLY the margins on that will be clear. God, I hope so. I wasn't sure if it was a procedure that would have you in the hospital over night, so I'm glad to see it is not.

 
Old 10-19-2006, 03:37 PM   #12
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Re: Cervical Carcinoma in Situ

My cone was surgery...that's what you need to remember!!! I had horrible cramps for a few hours afterwards, but they subsided. I also had many other things done, so the laproscopic was the one that caused the most problems...between being sore and the referred pain from all of the gas they pump into you, I was VERY uncomfortable for a few days. Other than that, I felt good and then I got myself into a jackpot!! I did not heed the no driving, no lifting, no walking other than what is absolutely necessary rules and I ended up in the ER hemorraging. Just take it easy like they tell you. It will hurt immediately after and probably for a few hours, but they give you good drugs and all is well (LOL)!

I did want to clarify that I would have a hysterectomy in a minute if that is what my doctor recommended. I would not do radiation - EVER! I will take my chances before I let them destroy the rest of my organs. I have two children and no longer have a use for my uterus other than delaying the menopause symptoms (the not having children because of dysplasia comment baffled me, by the way). I would not feel like less of a woman...my uterus does not define me. I am beautiful, and all woman...uterus or not!! I fully understand that the dysplasia can come back in the vagina...there is no 100%guarantee for any of us. But, given the statistics on that, and the fact that I am HPV negative, I would rather take my chances on that before I let cancer invade beyond my cervix. My atypical cells are more than likely not normal healing. I was a mess and it all happened in under a year...that is why I am being watched so closely, but even if it comes back, we'll kick it's butt...no worries!!

 
Old 10-21-2006, 08:47 AM   #13
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Re: Cervical Carcinoma in Situ

Quote:
Originally Posted by niarules
Also, even if provided that cancer was or seemed “confined” to uterus, there are many instances of it recurring in vaginal cuff or other pelvic areas. Is that not true?

I think I have a descent understanding of cervical cancers and their prognosis, some of which is unknown and in the case of adenocarcinomas - most of it is unknown.

I do however think that MDs over-simplify the info they provide to patients.

"You'll get a hysterectomy and your cancer will be removed" is not correct. It may be removed, is more like it.
I have to jump in. A bit of background. I had a hysterectomy. I chose to have a hysterectomy. I had a stage 1a1 removed by a LEEP, I consulted with two gynecologists who told me hysterectomy was too radical while dismissing all the emotions I was feeling that came along with recieving a sudden out of the blue cancer diagnosis. 9 months after the LEEP I had another smear come back with high grade changes. As I was in the stirrups the gynecologist doing the colpo said I would have to have at a minimum another cone or else hysterectomy. All that was recommended on the final report was a re-pap in six months. There was no explanation. I consulted with a gynecologist oncologist who was surprised that my case had not been reviewed and recommendations made when the cancer was first discovered. This doctor sat down with me and allowed me to talk about my personal situation, about my concerns. This doctor told me what my options were (watch and wait or surgery). This doctor treated me with so much respect compared to the other docs. She also arranged for counseling to assist with the diagnosis shock - she said that just because it was a little cancer does not eliminate the shock that comes with such a diagnosis. And we also discussed in detail that it could recur in other areas of the lower genital tract.

I researched hysterectomy for MONTHS. It was not a decision I made lightly, it was not a decision I was ill informed about. I know what the risks are for recurrence, I know that removing my cervix and uterus do not eliminate the possibilities of it coming back, but I do know that it reduces them to a level that I can cope with. I am curious to know where you found the research saying that many women go on to have recurrences on the vaginal cuff or other pelvic areas, because I've read alot as well and I have not found this sort of information. Is it possible for recurrence on the vaginal cuff, vulva, perineum and anus? yes indeed. No dispute, but I would like to see the numbers that consitute the use of the word "many".

The thing that influenced my decision was my personal situation and my ability to emotionally cope with watch and wait protocol, knowing I had never had an abnormal smear in my life then all of a sudden I had cancer. Yes it was tiny, but it had an enormous impact. Hysterectomy is an option I chose, but it does not have to be an option for all women. Some women are more comfortable watching and waiting. That's great for them. I wish I had half their strength.

I don't advocate hysterectomy as the best option for anyone. When I talk about it here, I always say "it was [I]the right choice for me[I]". I agree, you should read all you can about the surgery and make an informed choice about whether that is something you want to do or not. But know that if a woman does decide to go the surgery route that it is not a dirty word. And it doesn't make her any less of a person. Cause honestly, that's what I felt like when I read the first message about hysterectomy. and that's why I had to respond.

 
Old 10-22-2006, 02:56 PM   #14
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Re: Cervical Carcinoma in Situ

Karen -

Good for you!! I know you and I have discussed this before and you were actually the one who pushed me to get to the gyne/oncologist and thank you for that!! I feel so much better now that I am dealing with the pro. And if he says it's time, I will have the hysterectomy, regardless of what anyone else thinks. I find it strange that someone [I]without] cancer can so easily pass on advice as to what someone with it should do. It bothered me as well...which is why I clarilfied that I would have a hysterectomy. If my appendix became infected, should I tell them to leave it? My gall bladder ...leave that, too?? They take cancerous portions of people's livers out, their colons, intestines, testicles, breasts, etc....and save their lives. But we should leave a cancerous uterus in our bodies???? What is different about that organ??? Would we be making some women's libber statement..."I am woman, watch me die" ??? I can find 10 articles right now on the internet that would dispute every point nia quoted in her posts...that's the thing about opinions...

 
Old 10-23-2006, 10:37 AM   #15
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Re: Cervical Carcinoma in Situ

MY apology – Karen32 is right, this is not entirely correct:

“Also, even if provided that cancer was or seemed “confined” to uterus, there are many instances of it recurring in vaginal cuff or other pelvic areas. Is that not true?”

I meant that the recurrence of *advanced* invasive cancer outside of the uterus, is relatively high post, hysterectomy/rads/chemo.

With *very early* stage like 1A it’s only 4-7%, which I agree is miniscule. Good catch Karen. You should make a complete recovery soon, which is awesome.

I guess sometimes hysterectomy *is* the only choice.

I can’t quite articulate this, but I guess my worst fear with hysterectomy is that it seems that cervical cancer is often under-staged (even at LEEP/Cone). So, I’d terrified that while I’m getting a hyster, they’d discover advanced caner, at which point hysterectomy would take away the good few and healthy years that I may otherwise have, and I resent that.

But I guess no one can guarantee anything. I should look on the positive side of things more often

 
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