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Cancer: Cervical & Ovarian Message Board


Cancer: Cervical & Ovarian Board Index


Hi everyone...i've read a lot of research on cervical cancer and it has been said over and over again that 50% of all newly diagnosed cases of cervical cancer are in women who have never had a pap test and another 10% appears in those who hadn't had a pap in 5 years or more. That means that truly a majority of all cervical cancers are preventable.

I'm trying to get an idea from the members on this board who have been diagnosed with either Carcinoma In Situ (CIS) or early stage cervical cancer how many of you never had a pap until it was diagnosed or hadn't had one in a long time. Also, I know that some of you have been very diligent about getting your paps regularly and unfortunately still ended up having either severe dysplasia or cancer in a very short period of time...i'd like to hear from you as well. Thanks everyone :)
moderate dyplasia had leep the first pap i had was nov 04 i was 24 years old.
Hi Ivana,
No pap in 10 yrs, was diagnosed with svere dysplasia via colp, waiting for the biopsy to come back to tell me if it has gone further. Getting a pelvic ultrasound done on 3rd, to see if there are any other surprises anywhere. Yep, kicking myself about not going for the pap (especially as I have known that I have been an HVP sufferer for 8 years :nono: )
My dr. said regular paps = won't die from cervical cancer
Phaedrus....better late than never! I'm keeping my fingers crossed your diagnosis ends with severe dysplasia only. You seem like an upbeat person which is great :)...thank you for sharing and keep us posted on your results!
[QUOTE=Ivana]Hi everyone...i've read a lot of research on cervical cancer and it has been said over and over again that 50% of all newly diagnosed cases of cervical cancer are in women who have never had a pap test and another 10% appears in those who hadn't had a pap in 5 years or more. That means that truly a majority of all cervical cancers are preventable.

I'm trying to get an idea from the members on this board who have been diagnosed with either Carcinoma In Situ (CIS) or early stage cervical cancer how many of you never had a pap until it was diagnosed or hadn't had one in a long time. Also, I know that some of you have been very diligent about getting your paps regularly and unfortunately still ended up having either severe dysplasia or cancer in a very short period of time...i'd like to hear from you as well. Thanks everyone :)[/QUOTE]


Ivana,
I have gone faithfully for paps every year since 1992. Everything was fine until this past March. My pap came back with abnormal cells and since then it has progressed so that I go back on the 15th of March to discuss a date for a hystorectomy. I am only 33 but I am done with having any more children. At least I did go every year and get tested because if I didnt I may not have known the cancer was even there since there are really no symptoms. It is really hard to believe that so much could happen in just one year. My advice to anyone who is not getting regular checkups is to start going asap. ALWAYS get a copy of your pap results and if you are ever worried or not completely satisfied about a dr's diagnosis, go somewhere else.

Good luck to everyone,
Smiley123
Good advice Smiley123! I know that the doctors say that it could take 10 yrs for cancer to develop but i think that is slightly misleading since there are cases of where it progresses very quickly and the proof is in women like you who have regular pap tests every year. Just goes to show how little we still know about HPV and how it behaves differently from one woman to another...all the more reason to go for regular screening....good luck with your hysterectomy...i'm so glad you got it on time :)
im so sorry you went through that ! i went through 5 yrs of 3 abnormal paps and me ignoring it and ended up at cin 2/3 as well ( just had leep/laser) Im starting to think the VAST majority of dr's are ether misinformed, not up on current info, or just dont care. I mean all those PAPS! One pap , one colpo/biopsy, and anything more than CIN1 needs treatment - its pretty simple :( Its sad but today we need to do our own research. I cancelled a cold cone knife the morning of it b/c I researched and found out it was way too agressive for my type/location of abnormal cells. and was right, and avoided it. its SCARY that my 1st dr just said 'ok its cin1-2 get a cold cone" when im 26 and having kids in the next 5 yrs! Why are they like that - esp the women!

Good luck scared, where are you at this point? just monitoring? i have been told that the freezing can be good for the' leftover' after a procedure...
scaredone,

Thank you for sharing your experience, I am very sorry you had to go through all this. I hope all goes well for you from now on!

I have learned the hard way that I need to do my research and ask questions and make informed decisions. I have had nasty experiences with drs that shouldn't be practising in the first place... Now I am more assertive and try to keep informed and I make sure to have hard copies of everything they do on me. I suspect my file will have a notation calling me "difficult", but... better difficult than under/overtreated or dead.

I am daily grateful to have found these boards and met you all great people, who are so much braver than me. You have helped me enormously these past stressful and painful months.

Hugs.
:angel:
I have never missed a pap test. Everything seemed ok that is, until
2002, when it came back as ASCUS. I was told to come back in 6 months for another test. That one came back normal. I had another pap 6 months after that which showed ASCUS again. The doctor didn't do any other examinations and rather told me that because the results also came back positive for Strep-B that was probably why my pap came back abnormal. I was given antibiotics and told to come back in 6 moths for another pap smear (AGAIN!!). I felt really frustrated and decided to go to another doctor.
I think that saved my life!! I told her about my medical history and she
decided to do a HPV dna. That came back positive for a high risk strain. I was schedule for a biopsy the next week which came back as severe dysplasia with a large area of abnormality (from 11 o'clock to 2 o'clock). I am now recuperating from a cold knife cone procedure. It has been a rough month filled with anger and fear.
If there is any advice I can give is to be more proactive in your health. Unfortunately, like it happened to me, sometimes doctors are careless with their patients. A colposcopy back then would've revealed a much less severe abnormality that could've been treated less agressively!
Hi Kra...i'm so sorry you had to be a victim of doctor's incompetence and carelessness. I wonder sometimes if they realize they're dealing with our lives! That said, I'm glad you took matters into your hands and got the proper treatment on time, before it became even more serious. How are you feeling physically? Is your healing process going along well? Keep me posted :)
i am 21 and had my first pap in oct; it came back normal; i had another one about a month ago and it came back as ASCUS; then I had a colposcopy and my Dr said she was "surprised" and there was something "high grade" Does this mean I have cancer??? ... I am having a LEEP soon. I, too, am scared sh*less and really have a hard time talking about with anyone because of the whole HPV associations. HELP.
Hi Naama...try not to be scare...you don't have cancer. It means you have a high grade lesion, which most likely means you have high-risk HPV. High-risk HPVs have a higher rate of progression to cancer if UNTREATED. But since you are having a LEEP (very appropriate treatment) then you shouldn't have to worry. I know this is a confusing, scary time but you will get through this. Remember this: as long as you keep having regular paps (preferablly Thin Prep...they are MUCH MORE ACCURATE) and colposcopy for follow-up you will not get cancer.

What i find peculiar in your case is if your pap was truly normal in oct., how come you had to come back a few months later for another one? I wonder if already in oct. there was something your doctor found but maybe didn't say. Normally, if you have a normal pap you don't have to go back for another year. Make sure to ask your doctor about this. Also, maybe it would be a good idea to do an HPV DNA test just to be absolutely sure you have high-risk HPV...sometimes pathologists overgrade (they did for me and I had 2 LEEPS for nothing...my lesions were only low-grade but the pathologist said high just because he was slightly unsure...not good!)

Also, this whole HPV association...don't worry about it...take comfort in the fact that by age 50, 80% of the poulation will have contracted HPV...we're just some of the unlucky ones for whom the virus manifests itself.

Feel free to write back with any questions or concerns...good luck :)
Hi Ivana,
Thank you so much for your reply. I just got the news this morning and I haven't been able to think about anything else all day. I didn't have health insurance until a couple months ago so I went to a free clinic because I had an infection (also a recurrent BV that I'd never had before in my life) and that's when I got the Pap that came back negative. When I started seeing this doctor after getting the health insurance she recommended a Pap to get me up to date, and looking back maybe that one came back normal because of the infection. But either way it seems like whatever it is is progressing extremely fast and I'm worried about it spreading, or not healing right, or not being able to have kids. I just feel too young for this! Does the fact that my Pap came back as ASCUS mean anything about the seriousness of the dysplasia? :confused:
[QUOTE=naama]Does the fact that my Pap came back as ASCUS mean anything about the seriousness of the dysplasia?[/QUOTE]

ASCUS is the category that can drive us women nuts!!! It is not a diagnosis, just a red flag pointing to the presence of some cells that do not look normal (they are a-typical) and the pathologist could not classify them as either cancerous or non-cancerous.

I am still trapped in the grey area of ASCUS. My follow-up Pap came back worse as LSIL. I then had a colpo and they could not find definite dysplasia, but a pre-pre-cancerous cell activity that needs to be monitored with multiple colpos.

What I am trying to say is that ASCUS can be a false positive or caused by some inflammation or possibly indicate pre-cancerous cells of either low (more common) or high (less common after an ASCUS) grade.

Did your dr take biopsies or was just under the impression that high-grade lesions were seen through the colposcope?

Good luck with your LEEP!!!

Hugs from Elena :)
ASCUS is an acronym for aytypia squamous cells of undetermined significance. ASCUS occurs when squamous cells form on the surface of the cervix. Squamous cells are thin flat cells. ASCUS is considered a mild abnormality. ASCUS is a milder form of abnormality than a Low Grade Lesion (LGSIL). LGSIL is followed by High Grade Lesions (HGSIL) and then you have cancer. Don't forget...before it gets to cancer it takes a long time...up to 10 yrs.

As for the "fast progression" i don't think it's truly fast. Lesions take a long time before they become high-grade. What happens often is that paps are notoriously known for producing unprecise grading, that is why you are referred to colposcopy for a biopsy which confirms with almost certainty the grade of the lesion. Meaning, the pap may have come back ASCUS but in fact it may have already been a low-grade lesion with spots of high-grade as well. So it's not so much a progression but rather an accuracy in diagnosis based on the type of test used (pap vs biopsy).

As for having kids....you will just fine! I had 2 LEEPS and got pregnant with no problem! The onlytreatment that MAY have a negative impact on fertility is a cold knife cone biopsy which is much more extensive than LEEP. And even then it's very treatable (cervical dilators to open up the cervix, and lubricant if the glands were affected).

Hope this helps...
Well, just got a call from the dr's office after my pos-op visit. My strep B infection came back. I'm so scared. It is supposed to be very dangerous if it gets into your blood stream and I just had a cold knife biopsy 3 weeks ago!

What's more frustrating about dealing with this is that I haven't been able to find
anything online about it that doesn't pertain to pregnancy. Is there anyone out there who has gone through this? Suffering from this has been a nightmare. I couldn't have my punch biopsy done until the infection was cleared out of my system. The same
for the cone surgery. Now is back and my cervix is not fully healed!
Hi Everyone,
Unfortunately, not all cervical cancer is preventable with regular paps. I am only 30 years old and living (thankfully) proof. I have always had yearly pap smears without any hint that there may be a problem. In February I went for my annual pap, returned for a colposcopy for moderate dysplasia, returned again for biopsies, and finally for a LEEP. My doctors famous last words were "I can tell that I got it all." He was refering to the dysplasia that is visable due to vinegar put on your cervix. I left the doctors office, went home and thought nothing more about it. Ten days later I receive the heart breaking call and referral to a oncologist. Two weeks later I was scheduled for a radical hysterectomy and removal of my ovaries and lymph nodes. Not only did I have multiple tumors in my cervix the cancer had spread to my lymph vascular channels which required the major surgery. After 10 days in the hospital I learned that my cancer was removed and I would need no chemo/radiation.

Although the statistics for annual paps and slow progression to cancer did not work for me I still feel very blessed. Six weeks ago we were trying to get pregnant and now we are happy that I will be okay. My cancer has definately changed my life. Every morning I get up and thank God that I will be here to watch my two beautiful children grow up. I know it seems hard when you are waiting and thinking worst case senario, but I promise that there is a reason for everything even if it is not your plan. I walk this earth (although hunched over like i am 80 because of this 10 inch cut) happy to be here, and will definately take more time to enjoy the important things in life.
Newberry...i'm so sorry you had to go through this, and at such a young age!...but i'm so glad you're going to be ok :) Having cancer really does change one's perspective on life. Unfortunately, Pap tests are not more than 50% reliable....especially if cancer is deep inside the cervix and abnormal cells do not appear on the exocervix...and even then sometime a simple pap test misses it completely. The new ThinPrep Pap technology, combined with the HPV DNA test at 95% accurate. I wish more doctors would switch over since the technology has been available in North America for 4 yrs...it may cost more but it sure will save a lot more lives. I wish you a speedy recovery although i know it'll take a few months...keep up the positive attitude...you're an inspiration to many!
Hi everyone,

This is my first visit to these boards, and I came here in hopes of finding others with my similar problems. I too thought that all of those statistic you hear about cervical cancer were those people who do not keep up with their regular paps. But having read the other posts to this thread, I realize this is not true in all cases. Having just read Newberry's post, I am now terrified.

Here's my story:
I am soon to be 23 years old. I found out I had HPV about 2.5 years ago when I had a visible wart. The wart was removed, and I haven't had one since. I had a normal pap (from Gen.Pract.) 6 months or so after that incident, and it was normal. (I am very strict about getting my yearly pap.) My pap a year after that, which was last winter, came back abnormal. My retest six months after that was abnormal as well, so they sent me to GYN. She did a colpo about a month ago. She took two samples. The results from the colpo (and the other abnormal paps) showed low-grade abnormalities. I am scheduled to have another pap done in July/Aug, which would be almost a year since the first abnormal pap test result.

To be perfectly honest with you all, I am pretty much terrified. I've read that low-grade abnormalities usually fix themselves. However, since it's been almost a year, and i still have abnormalities, I am worried this will not be the case for me. I've also read that if the abnormalities progress to moderate or severe, that a leep will be done to remove those pieces. I've also read that it takes several years for this to progress into cancer. However, after reading Newberry's story, I can't really tell myself that anymore.

My biggest fear right now is that I am about to get married to a wonderful man, with whom I despirately want to start a family. If I have the leep done too many times, won't that weaken my cervix and make that difficult? It is all just too scary to be this young, and not know if you will be able to start a family one day. I think if this was happening ten years down the road, and i already had children, I would be a little less scared. If this was then, and I did develop cancer that could be removed by a hystorectory, at least I would already have a family.

I'm very sorry if i have offended anyone with my post. I wish you all the best.





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