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Old 02-17-2008, 08:28 PM   #1
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Very worried and confused after biopsy

I have gone in for a pap every year since I was 16 and they have always come back normal. I am 37 now and had my first abnormal result about 3 weeks ago, I really didn't think a thing of it. I was scheduled for a colposcopy and they ended up taking a biopsy. I received a phone call 2 days ago - I have Very High Grade Dysplasia HGSIL, Level 3. I have to go in for a LEEP procedure. I am not scared about having the procedure, but how did this progress so quickly? I went form nothing to the worst case scenario (as far as dysplasia goes) in less than a year. I've done a ton of research on my own, I know that all dysplasia starts with HPV infection. I am recently divorced and have a new sexual partner(within the past year). Why is this being so aggressive in me? They don't know how deep and wide the margins are until after the LEEP. When I came right out and asked if I had cancer they said they could not answer and I will know more after the procedure. To the best of my knowledge, progression takes years - usually starting with an abnormal pap and mild to moderate dysplasia progressing to severe dysplasia over a period of time. I am a lab tech and have some limited knowledge about the disease process, I am terribly concerned that things are moving so quickly, any information or similar stories would be greatly appreciated.

 
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Old 02-17-2008, 10:51 PM   #2
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Thumbs up Re: Very worried and confused after biopsy

Jodi

I am sorry you are dealing with this. My prayers are with you that your biopsy will be benign. Take care and keep us updated.

Nadine

 
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Old 02-18-2008, 10:18 AM   #3
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Re: Very worried and confused after biopsy

Hi Jodi,

I'm sorry you're having to deal with this. It's very scary, isn't it.

Since a Pap test only samples cells in the spot where the doctor scrapes the cells, it's possible that the area where your abnormal cells are was missed. So, they may have been changing for a few years.

I hope everything turns out okay with your LEEP procedure. Please let us know what you find out.

Hugs,

Lisa

 
Old 02-18-2008, 01:06 PM   #4
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Re: Very worried and confused after biopsy

No--dysplasia is usually not a "progressive disease". It usually does not start as a simple HPV infection progressing to mild dysplasia, then moderate, then severe, then in-situ, then cancer. It can, but is not usually the case. If you have a high-grade lesion(s) (and you have been screened regularly) it usually is a result of a high-risk viral strain and a low immune response. Most cases of mild dysplasia DO NOT progress. When it does, there is usually more than one high-risk strain of HPV involved, along with a compromised immune system as a result of smoking, poor dietary habits, lack of excercise.

 
Old 02-18-2008, 02:08 PM   #5
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Re: Very worried and confused after biopsy

Hi Jodi,
I had the same thing happen. I was pregnant at the time though. I went from having completely normal paps since I was 16, (I am now 34), then BAM - also very severe dysplasia. They could do no more than a colposcopy on me since I was pregnant. After the birth of my child, I went in for another colposcopy where it was revealed I had AIS-(adenocarcinoma in situ). I then was told I needed a cone biopsy to make sure it was not invasive. The reports from the cone showed that indeed I had stage 1B cervical cancer. I was like WHAT!? It's not even 1A? I don't mean to scare you. Chances are good your's is not invasive. If it is, it is caught early and that's VERY good.
I think if it's adenocarcinoma, the cells are glandular and are harder to detect on a pap. (that's what my Dr. told me), in other words, adenocarcinomas, which make up about 15 to 20% of all cervical cancers are just "sneaky petes". I'm wondering if that is the case with you.
I have spoken to many women with this type of cc and we all had the same experience with normal paps then all of a sudden, high grade dysplasia. In fact, I remember asking the nurse what happened to the other 2 grades?
Please don't worry and try to stay positive. I'm sure everything will turn out just fine for you.

Last edited by sharona714; 02-18-2008 at 02:09 PM.

 
Old 02-18-2008, 06:54 PM   #6
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Re: Very worried and confused after biopsy

Thank you so much - I couldn't find anyone else out there that had gone through this. I just keep telling myself that everything will be just fine...All I can do is wait. If you don't mind me asking, what did they do for you when you were diagnosed? Did you have to have treatments, hysterectomy, both?

 
Old 02-18-2008, 07:25 PM   #7
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Unhappy Re: Very worried and confused after biopsy

Hi Jodi,
My name is Amy and I am currently going through the same situation as you have described. I am 30 years old. I have always had normal paps (that is until my most recent one back in December 07'). The doctor tested for HPV and the results were positive. She scheduled a colposcopy wich much to my surprise revealed severe dysplaysia. On my follow up appt. I inquired about my possibility of having cancer and the doctor, much like yours, could not give me a definite answer. My next step is to go in for the LEEP procedure which is scheduled for one week from today (2-25-08). I am also scheduled on April 3, 2008 for a vaginal hysterectomy. Personally, I think she knows more than what she is telling me. Why else would she so quickly schedule a hysterectomy? I am terrified of the thought of having cancer....
Have you had any unusual symptoms that led up to your diagnosis? Originally (back in December) I went to the doctor because of severe abdominal and pelvic pain. The pain occured during and after intercourse which the doctor indicated was due to my cervix. That is why the HPV test was done in the first place. In addition, for the last two years or so I have had extremely long, heavy periods. Before that, normal for me was to have a period once every two or three months. Now I bleed 2 - 3 weeks every month. Ughh! Can you relate to any of this?

 
Old 02-18-2008, 07:28 PM   #8
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Re: Very worried and confused after biopsy

Piper:
Thank you, but you didn't give me any information I could use. I absolutely do not have a weakened immune system, I excersize regularly, my diet is very good, I don't smoke.
I don't know how a person would know if they have a high risk viral strain, in fact, what did you mean by high risk viral strain? High risk viral strain of what... HPV?
Dysplasia is a changing of cells, the definition in the Webster's Dictionary is simple and true; : abnormal growth or development (as of organs or cells); broadly : abnormal anatomical structure due to such growth..... It is progressive in some people depending on different scenario's.
I was asking, had anyone else ever had the same scenario as me, this quickly. I'm sorry if you misunderstood my message.

 
Old 02-18-2008, 07:42 PM   #9
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Re: Very worried and confused after biopsy

Hi Amy,
I can absolutely relate to you. After the birth of my youngest, he's 8 now - I started having heavy periods which became the norm for me. Then all of a sudden this last September, I don't get a period hardly at all - I spot a couple of days about once every 3 months. I do not have pain with intercourse, but I have light bleeding after intercourse that stops within a couple of hours. I don't feel good about what either one of us is going through, but I don't feel so alone. I have a whole handful of friends that have had this or know someone who did. Nobody had it happen this fast, It scared the bejeebers out of me, for real. Thank you so much for responding. PLEASE let me know how your procedure goes - good luck to you.

 
Old 02-19-2008, 10:50 AM   #10
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Re: Very worried and confused after biopsy

Jodi3, I think what piperpilot is referring to is a low local immune response, not so much your overall health/immunity, although obviously if your overall health is poor it would be harder to clear the hpv. Every woman's response to hpv is different. This is why some light smokers can clear hpv without knowing they ever had it, whereas other women who do everything right and who are otherwise very healthy, can't. I learned that it is not just about your overall health. I corresponded with an hpv researcher and apparently one's HLA type really matters. Certain HLA types do not present the hpv infection to the immune system for it to produce antigens to attack it. There's even evidence pointing to racial differences in clearance. Therefore, given your clean lifestyle & half a lifetime of regular screening, it is not something you are doing or are not doing--in a way, your genetic makeup sets the stage for how you react to the hpv and lifestyle factors are "merely" contributory. This was hard for me to accept as well, and I remember thinking, "given my lifestyle why am I not one of the 80% majority of women in whom hpv causes no problems, symptoms, or bad paps and who never know they had it and cleared it?"

High-risk viral strains or high-oncogenic strains of hpv are the ones which cause dysplasia and cancer. The low-risk strains do not and sometimes cause warts. In the absence of immunocompromise, a low-risk strain would never be responsible for a moderate or high grade dysplasia. Your gyn may have done "hpv reflex testing" or Digene hybrid capture test to check for hrhpv--although many gyns and gyn-oncos dispense with this test, because dysplasias are always caused by hpv and so the test wouldn't offer anymore information as it doesn't tell you which type of hr you have (16 & 18 being the most virulent and the types most often studied). I guess reflex testing is most helpful for ASCUS paps, where it's not clear whether the cells are truly abnormal.

Piperpilot, if you are still here, can you tell us how/where you found the information that most high-grade lesions skip I and II and go straight to III? I'm not saying it's wrong because I think the medical establishment is mostly not up to speed on hpv, but it runs contrary to everything I've read and what the hpv researchers have told me. Also, doctors just don't entertain the idea that a lesion can go directly to high grade without first being low or moderate grade. It is just helpful to get a different take because the self-clearance within a year does not happen for some and there have been a lot of ladies who had high grade lesions appear out of the blue after years of clear paps.

I've read that if koilocytes are present esp. in low grade lesions it supposedly means greater chance of regression--is this because the hpv hasn't yet integrated into the host DNA, even though there is active infection? Thanks!

Last edited by BE 123; 02-19-2008 at 11:50 AM.

 
Old 02-20-2008, 10:08 AM   #11
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Re: Very worried and confused after biopsy

My best to everyone. My best advise is to gain copies of your lab results, read them an understand them before allowing surgery. Search the web regarding HPV hoax.
Gynecologists have frightened patients into believing they WILL get cervical cancer if they have HPV or dysplasia. God bless everyone.

 
Old 02-20-2008, 10:18 AM   #12
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Re: Very worried and confused after biopsy

Lesion are graded (I, II, III) based upon how deep the dysplastic cells are found in then epithelium. Any high grade lesion (II or III by definition), can begin with a dysplastic cell at surface, at midpoint and and at base almost instantaneously. It does not have to start with a low grade lesion (cin I) then progress to a high grade lesion. High-grade simply means the bad cells make up more than 1/2 depth of the epithelium, it doesn't mean they are "more like cancer". I would discuss your biopsy report prior to surgery. In your case being on the pill may have contibuted to dysplasia due to estrogen dominance. This can be reversed without surgery but docs are in business to making money and they love sell surgery.

 
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