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Old 08-15-2008, 11:28 AM   #1
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Anxious waiting after LEEP

I am 47 and after many, many years of normal PAP smears, I had a CIN III or "carcinoma in situ" Interpretation. In addition the PAP had a line that stated: Excessive Inflammation. This "Inflammation" note was also on my previously normal PAP test, last year.
I panicked and asked for an appointment - luckily I had one the same day. The recommendation was for Colpo but after a short in office conversation the DR assured me that LEEP will both diagnose and treat. And I did this at that time - three days ago.
The procedure was far easier than anything else done before: I had polyps removed years before and an Endometrial biopsy that were far more painful than this, even under local anestesia.
After LEEP I tried to ask the DR if he has "seen" anything I should be worried about, but unlike other times , he did not answer directly: "we should wait for results first".
Now I have to wait until next week for the results and I am worried sick over the alternatives. Cannot help but thinking at the worst, so I stumbled upon this forum. Reading and learning from other experiences - from the patient side - helps enormously, so I am asking for any kind word of encouragement and stories about similar experiences on waiting and outcome in similar situations.
Thank you so much for reading this

worried
D

 
Old 08-15-2008, 12:19 PM   #2
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Re: Anxious waiting after LEEP

D,

I just wanted to stop by and welcome you to our little world! I am so glad that you found this great website!! I really can not help you out with this one, as I am new to the 'abnormal PAP' experience. But I wanted to let you know that I will be thinking of you and please do let us know what your test results say.

I am sure that someone more knowledgeable of this will be along shortly to offer help in understanding what is going on.

~Melissa~

 
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Old 08-15-2008, 12:35 PM   #3
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Re: Anxious waiting after LEEP

Hi DHM, I'm sad to hear of your results, but am so glad you have found us! We will do our best to answer your questions and give understanding!

This sort of issue throws us onto wild roller coaster rides. I'm so glad there are sites like this that can offer information and support. I can't imagine what life was like with this type of diagnosis WITHOUT the internet!

You may have already read my story/history, but I'll give a shorted version just in case you haven't. I am 45, I always got my annual paps and they always came back good. In December my doctor did the HPV/dna test for the first time. She had just started offering to women over 30. I was so anxious and confused with that diagnosis, I scheduled another appointment with her so she could re-explain the test, the results, the possibilities. I guess since I was so freaked out she said I could by-pass the wait-and-recheck-in-3-months and go straight for the colposcopy. I went to a gyno who did the colpo and and ECC. She didn't see anything wrong with the colpo, she didn't need to take any biopsies. The ECC came back adenocarcinoma in situ and atypical glandular epithelial lesions. She then ordered a cold knife cone. That came back adenocarcinoma Ia1. I then went to a gynecological oncologist. She had my slides reread and said the diagnosis was accurate. We discussed my surgery options. "All" I needed was a hysterectomy to remove my cervix and uterus. I didn't need chemo or radiation.

While the cancer diagnosis has been like Mr. Toad's Wild Ride, I am so relieved my regular doctor did the HPV/dna test and that the gyn did the ECC.

When it comes to your situation, it is possible that the LEEP will be diagnostic and treatment in one procedure. The pathology on the LEEP will give your doctor a good idea of the extent of the dysplasia.

I know the waiting really is difficult. It helps to have somewhere to talk about everything in the meantime. You know, you could call the doctor's office to see if the results are in yet. Sometimes they come in sooner than expected. In all of this, I never waited for the doctor's office to call me . . . I always called them first! While I didn't get the news I wanted, I felt some control on knowing when I received the information.

Best wishes and check back with us! (((hugs and prayers)))

 
Old 08-15-2008, 03:52 PM   #4
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Re: Anxious waiting after LEEP

Thank you Melissa and Pickle Eyes for your quick replies... it is great to feel one has a support system and this forum does exactly this.
Meanwhile I discussed this with a few good friends (doctors) and all reassured us (me+husband) that even the worst case scenario is curable (not only treatable)... so this eased the burden a little.
I tried to have them answer my other question also: "why me?" because I am the absolute poster for healthy living in a 30 years one-and-only relationship with my husband (met him at 17)... and their answer was: " when you'll find out why you and 1 in 4 women have HPV, tell us and maybe we'll know "... which brings me to my next question:
My Dr did not tell me anything about an HPV test, just said that "this is caused by a virus". Should I ask for a test (DNA?) or just wait and see the results?

Thanks again
D

 
Old 08-15-2008, 05:20 PM   #5
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Re: Anxious waiting after LEEP

I've read that some women's doctor's aren't giving the HPV test if there is a cancer (or precancerous) diagnosis. I think it is assumed to be caused by HPV since something like 99.6% of cervical cancer is caused by HPV.

My doctor just started offering the HPV test less than a year ago; just a few months before I went in for my pap. If she hadn't offered it, the cancer would still be in me and no one would be the wiser . . . AND . . . I'd have a worse case by the time it was caught on the next pap, if then.

I think the numbers are higher for women who have HPV. Eighty percent of women over 50 have been exposed to HPV at some point in their lives. Fortunately most of those women are able to fight the virus and not have problems from it.

 
Old 08-16-2008, 10:36 AM   #6
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Re: Anxious waiting after LEEP

Hi dhm88. Yours is a story that unfortunately, all too frequently pops up in this forum. Long monogamous relationship, suddenly high grade cervical dysplasia reading. I totally agree with Pickle Eyes about the HPV testing. It has saved a lot of women.

The current thinking on HPV, especially the invisible (not overtly visible) high risk (oncogenic) strains, is that it can lay dormant, waiting to activate at the first sign of immunocompromise. ANY immunocompromise, it does not have to be something truly dire like HIV. Also, hormonal changes greatly influence HPV activation and dormancy. Personally, I believe HPV clearance simply means dormancy or latency. The DNA will always be there, but is it active or not? "Clearance" is a very misleading term.

At your age, nearing if not at menopause, I would push for HPV testing. Commonly done with the Digene Hybrid Capture II test, which includes all high and (I think) some intermediate risk strains. There is also the Roche Amplicor test which tells you the specific STRAIN you have. Whoa! Too much info for me, I'm too scared to ask for it. I have high risk (probably multiple strains) and possibly low risk. The low risk I don't care about as long as I don't have condyloma (warts) anywhere. It's the high risk we women are concerned about. Anyway, if your doctor is affiliated with a teaching hospital then you can ask him about the superior Roche test. All high risk strains are not created equal. 16 is by far the most virulent and most persistent, and other common findings in cancer include strain 18, 31, 33. But it's impossible to tell how a certain strain will affect you.

Your doctor is right in that a LEEP is both diagnostic and therapeutic. Usually a colposcopy with biopsy follows an abnormal pap, but my guess is he did this because he didn't want to sit on a high grade reading.

The flippant attitude that most gyns have regarding HPV really bothers me. YES, the vast majority of the 80% of women who are exposed to HPV in their lifetimes never develop lesions from it. And, prior to Gardasil, NO public awareness. But if you happen to develop problems from HPV, it sucks in a major way, who cares that HPV is "innocuous" for most other women when it's affecting you. However, with close monitoring you can be pretty sure this will never turn into full blown cancer. Good luck!

Last edited by BE 123; 08-16-2008 at 10:44 AM.

 
Old 08-17-2008, 04:55 AM   #7
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Re: Anxious waiting after LEEP

dhm,

I'm going through the same thing you are right now. I'm also 47 and have had a lifetime of normal paps. My leep results came back CIN 3 with positive margins. My gyn suggests waiting six months and repeating the pap. (((HUGS))) to you. I know how upsetting this is.

Question -- Is CIN 3 the same thing as carcinoma in situ? The reason I ask is because my ECC came back CIN 3 AND Carcinoma in situ. I've read differing opinions on different websites.

 
Old 08-17-2008, 07:52 AM   #8
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Re: Anxious waiting after LEEP

Thank you so much Brieaukirsch - this is by far the most info that relates to my case... I wonder why Dr do not share this with patients. I specifically asked if there is a connection between this CIN3 and the fact that I am approaching menopause and he answered "no" which now I believe it is not true. I also asked if the "excessive inflamation" and my previous history of cervicitis and polyps (benign) are a possible cause and again he answered "no".
What truly throws me off is the fact that he is connected with an internship program at a major hospital and I know for a fact that he is involved in teaching... and cannot stop wondering how can someone like this miss the signs at my regular check-up when the PAP was done. He even said that all is okay and reassured me that the PAP will come back negative... how is this possible???
He never proposed an HPV testing nor a DNA or hormone type of test - none were even mentioned. The info I am getting from You is more related to my case than the Dr info in the office!!!
What actually kills me is the waiting for the results of this LEEP - and the fact that now I completelly lost faith in this Dr: I was with this specific office for almost a decade!!! What would be - in your opinion - the best way to go now: to go directly to an OBGY - ONC and have a second (complete) opinion???
Thank You so much for your replies - as said these are by far the most informative for me.
D

 
Old 08-17-2008, 07:59 AM   #9
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Re: Anxious waiting after LEEP

Hi Kell1960 - I do not know what to say : I am still waiting for my results and it is so painfully difficult. The info from Brieaukirsh below is probably the best I got so far and I see how it relates to women in our situation. Hugs back to you and - as much as you can stay strong... I know for me this is close to impossible given the terms that are typed on the results and the scare asociated with them... no matter how much I am told that they do not mean the worst, the question still lingers in my mind...
Thank you for your reply
D

 
Old 08-17-2008, 09:00 AM   #10
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Re: Anxious waiting after LEEP

CIN3 is not the same thing as carcinoma (or adenocarcinoma) in situ. The In Situ is one step beyond, the way I understand it. Some doctors (and websites) describe AIS/CIS as the highest level of dysplasia (like CIN), other sites describe it as Stage 0 cancer. For that reason (stage 0), with either diagnosis (AIS/CIS), I say call a gyn/onc to see what you need to do to be seen by that doctor.

 
Old 08-17-2008, 01:19 PM   #11
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Re: Anxious waiting after LEEP

I'm sorry I wasn't more clear in my first reply. I don't mean to give the impression that your doctor dropped the ball by not testing you for hrHPV because the reasoning is, if you have CIN 3 (assuming it was read correctly by the pathologist) then you automatically have hrHPV. HPV causes virtually all cervical dysplasias and in the absence of immunocompromise, only the high risk strains cause high grade lesions. Only a very minute fraction of high grade cervical dysplasias are caused by another agent which the pathologist should be able to determine. Your pap would have read "clear cell" something or other.

Since your doctor is affiliated with a teaching institution, you may want to ask him for the Roche Amplicor test. It will tell you which specific strain you have. None of the high risk ones are not good to have, but 16 is worse than all the others. So my reasoning is I'd be more "comfortable" knowing I have something other than 16, even though they are all classified as high risk (meaning they're found in cancers).

Are you on HRT? Synthetic hormones absolutely affect HPV and dysplasia but the degree varies from woman to woman. We're all different. A common supplement for dysplasia is indole-3-carbinol, found in cruciferous vegetables with the capability of metabolizing "bad" estrogen into "good" estrogen. It's popular among perimenopausal women when too much estrogen is harmful (not as much for younger women because we are still menstruating and our bodies are supposed to go through high estrogen states). You can try searches on pubmed for more info. But beware, just because it's a peer-reviewed study doesn't mean it's gospel. Nothing's perfect!

Also, age is important because as the older we are the weaker our immune systems get. But it's not a perfect guideline. I know women in their 30s who cleared HPV and some women in their 20s with cancer from HPV.

Mostly it's down to genes (how your genes respond to antigens, HLA types, whether you have certain oncogenes, inflammatory factors, etc).

The one thing I DON'T agree with your doc about is the guarantee that the next pap will be negative. First, you want to know that you had clear margins, that's the best leep result. The leep as you know removes the effect...not the cause! I have high risk HPV and two paps have come back normal while others not. Also...I hate to say this, paps are subject to waaaay bigger margins of error and HPV testing, while nowhere near perfect (it often misses infections that are there) is far superior.

At this point, since you don't have cancer and you just had leep which removed most or all bad tissue, you have time to get other opinions. But be careful about "too many cooks in the kitchen." I wouldn't go in to a new doctor saying "I'm unhappy with my old one." Doctors hate patients who ask a bunch of questions. They also don't like or believe in alternative therapies, they stay faithful to what they learned in med school whether it was 5 years ago or 35 years ago.

 
Old 08-17-2008, 01:30 PM   #12
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Re: Anxious waiting after LEEP

I would see a gyn-onc if you can. Not all gyn-oncs are great, but they're supposed to have more training. I forgot to mention that the geography of the cervix changes as we age. The TZ which is where most squamous abnormalities occur inverts into the ECC after menopause. Was your doctor able to fully visualize yours?

Inflammation is not dysplasia, but often times women have "inflammation" readings on paps immediately prior to developing low grade lesions. I don't know about polyps.

No hormone test would tell you what's going on with the cervix. It's just that peri is a time of wild hormone fluctuations. I would not be taking any synthetic hormones until this is resolved though, if ever.

 
Old 08-18-2008, 07:54 AM   #13
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Re: Anxious waiting after LEEP

[QUOTE=brieaukirsch;3692726]I would see a gyn-onc if you can. Not all gyn-oncs are great, but they're supposed to have more training. I forgot to mention that the geography of the cervix changes as we age. The TZ which is where most squamous abnormalities occur inverts into the ECC after menopause. Was your doctor able to fully visualize yours?

Inflammation is not dysplasia, but often times women have "inflammation" readings on paps immediately prior to developing low grade lesions. I don't know about polyps.
QUOTE]
Yes, the Dr was able to look at the cervix when the PAP test was done and that was the time he mentioned that he expects the results to come back negative. At that time he also did an Endometrial biopsy to make sure that the occasional bleeding (spotting actually) between periods are not a problematic issue. At that time I assume he was able to have a good visual on the TZ since the PAP was done also, and see if there were visible signs of "excessive inflammation" or "lesions" as the PAP results read. This is the reason I am seriously in doubt: if these results (as I understand now) are accompanied by a certain "look" of the TZ, is it possible that a trained eye can miss them???
I have a history of cervicitis, polups and mild infections but this is the first time he actually said that I am okay (after the PAP) - so the results came as a total shock, hence my doubt in his abilitty or willingness to care.

In answer to your other question: No, I am not taking hormones or any therapy based on them. I was given only once the pill but after one week the side effects were impossible to manage (I never felt so ill my entire life). I have ESSURE since '04 (permanent sterilization with implants) that worked just fine with absolutelly nothing to complain about. I was also offered to start a HRT but I think I can manage the effects of peri by exercise and diet .. and conversations with my husband and friends.
I understand that now the absolute only thing is to wait for the results, but cannot stop wondering how such a thing can happen so sudden to a not-high-risk person. This is why your info (with the HPV testing) came as an explanation that I felt my Dr should have given me instead the typical "it's a virus and it just happened - that's why you do the PAP test". I totally agree with you on the fact that most if not all doctors do not subscribe to alternative options of therapy and the reasons can be debated.
Thank you so much for the info - you are so thorough in explanations and involved in the cure. I am still trying to overcome the shock , absorb and make sense of the situation.

D

 
Old 08-18-2008, 04:38 PM   #14
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Re: Anxious waiting after LEEP

It is definitely possible to miss lesions, especially if they are low grade. If they are high grade, especially CIN3/CIS, a trained eye SHOULD be able to see them with the naked eye and absolutely with the vinegar wash. It's the vinegar wash that directs the colposcopist to the affected areas.

I think I know where your doctor was coming from when he said the pap would be negative. He probably did the vinegar wash, which didn't show any white. If there was white, he would have (or should have) taken a biopsy. Since he did a pap, there was probably no white. No white means there shouldn't be any abnormalities.

Inflammation does not equal lesions. The specific type of lesion that HPV causes is intraepithelial or glandular indicative of precancerous or cancerous cervix. Other agents can cause cervical lesions that, occuring alone (i.e. in the absence of coexisting hrHPV) have nothing to do with cancer: e.g. HSV-2 lesions.

 
Old 08-18-2008, 05:53 PM   #15
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Re: Anxious waiting after LEEP

Quote:
Originally Posted by dhm88 View Post
I understand that now the absolute only thing is to wait for the results, but cannot stop wondering how such a thing can happen so sudden to a not-high-risk person.
You and me both! My cancer diagnosis was a total and utter SHOCK! I'm so thankful I live in a day and age when we have the technology to detect the virus that causes cervical cancer. Anyway (((hugs))) to you!

Quote:
Originally Posted by brieaukirsch View Post
It is definitely possible to miss lesions, especially if they are low grade. If they are high grade, especially CIN3/CIS, a trained eye SHOULD be able to see them with the naked eye and absolutely with the vinegar wash. It's the vinegar wash that directs the colposcopist to the affected areas.
Right, and then AIS (adenocarcinoma in situ) can not necessarily been seen even with a colposcopy and the vinegar wash. The endocervical canal needs to be scraped (ECC) to check it. I'm sooooo thankful my doctor did that!

 
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