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Cancer: Cervical & Ovarian Message Board


Cancer: Cervical & Ovarian Board Index


[QUOTE=brieaukirsch;3911912]Luvbug, forgive me for not recalling your story and specifics, but why was your AIS discovered accidentally? Was a colpo leading to the CIN diagnosis performed, did your gyn neglect to perform an ECC with your colpo, or was the ECC falsely negative? What grade was your CIN?

Please let us know what happens. Thanks.[/QUOTE]

Pap in Jan -> ASCUS
Colpo w/ biopsy + ECC -> CIS @ 8 o'clock location - no abnormality found on ECC
LEEP -> Clear Margins + AIS

Every step of the way has found yet another diagnosis. Rather frustrating. I know when my Doc called me w/ the pathology from the LEEP he seemed rather surprised he was telling me about AIS as well. But, from what I understand this isn't all THAT unusual or rare. The rate of false negatives is rather disconcerting.

Is it rare for CIS and AIS to show up at the same time?
Falsely negative ECC is so scary. I am sorry, this must be terribly frustrating. I am confused, though. I looked through some of your posts, and at first it was CIN in the canal. CIN in the canal does not automatically equal AIS, as I'm sure you know. Whether something is CIN or AIS depends on the type of cell involved: squamous or glandular--not on the location. It is possible to have squamous dysplasia in the canal; I did. (hopefully did, not do)

You may want to get a copy of the pathology lab. I'd be interested in knowing specifics, or you can PM me. Thanks much for replying.
Elizabeth, I was replying to luvbug, but did the same thing happen to you, that is mixed disease?

Luvbug, does your pathology report clearly state that two types of cells are involved, squamous and glandular? Whoa...ok...I am going to ask for a serious scraping. I had squamous canal involvement difficult to grade, but they also couldn't make sense of the "glandular-like" tissue from the ECC and I'm praying that was normal.
Actually the pathology for the ECC was clear.

It wasn't until my LEEP that AIS was discovered.
I am at a total loss and extremely upset... :dizzy:

When my Dr. showed up for the appt. we chatted a bit. He seemed quite pleased at the clear margins since it was carcinoma in situ. At first I thought my ears were deceiving me. He didn't mention one iota of info regarding adenocarcinoma in situ. Have I been wrong all along and misheard him spoke three weeks ago? I was HOPING I was..

I asked about follow up treatment - his recommendation every 4 months to start. With the first one being scheduled w/ a colpo in July.

I also asked about HPV DNA testing w/ follow up paps. He mentioned it wasn't necessary since I've already been shown to be positive for high risk. - Um OK!!!

Also - said there is no evidence of nutritional supplements of vitamins doing any good AND that my long term use of hormonal birth control had no bearing on it either. - Yeah - ummmm OK!

Anyway - back to the first part of it - with the "carcinoma in situ" diagnosis, I asked for the pathology from the LEEP.

Okay - this is where I've made the following decisions...
1) I'm calling a gyn/onc TOMORROW
2) I'm finding a new ob/gyn TOMORROW

Here is the pathology report (with my own two cents)

[B]Anatomic Source of Specimen[/B]
A. Ectocervical LEEP 12:00 suture
B. Endocervical LEEP

[B]Clinical Diagnosis & History[/B]
ACIS ([I]okay... I was TOLD my original biopsy was CIS - requires more investigation. I actually return to the office in a week ANYWAY for my depo shot. Will aquire colpo/bio pathology then because now I AM curious.[/I])

[B]Type of Procedure[/B]
LEEP procedure

[B]Gross Description[/B]
A. Received labeled "ectocervical LEEP". Specimen consists of a complete LEEP specimen measuring 1.5 x 1.5 x 1 cm. A suture marks the 12 o'clock position according to the requisition slip. The deep margin is marked with india ink. The 12 to 6 o'clock position is submitted in cassette on. The 6 to 12 in cassette two. Also received in the specimen container is a crescent shaped piece of similar-appearing tissue measuring 1.5 x .5 x .5 cm. The deep margin is marked with india ink. The specimen is submitted in cassette three.
[I]Similar appearing tissue? Where else COULD it come from dearies[/I]

B. Received labeled "endocervical lesion." The specimen consists of an irregular fragment of pink-tan tissue measuring 1.2 x .7 x .7 cm. The deep margin is marked with india ink. The specimen is sectioned and entirely submitted in one cassette.

[B]Microscopic Description[/B]
Microscopic evaluation performed.

[B]Final diagnosis[/B]
A. ECTOCERVICAL LEEP, BIOPSY: ADENOCARCINOMA IN-SITU. SURGICAL MARGINS FREE OF IN-SITU CARCINOMA.
Comment : The majority of the adenocarcinoma in-situ is present in section taken from 6-12 o'clock position.

B. ENDOCERVICAL LEEP, BIOPSY : PARTIALLY DENUDED AND CAUTERIZED FRAGMENT OF ENDOCERVICAL GLANDULAR MUCOSA WITH NO EVIDENCE OF ADENOCARCINOMA IN-SITU.
[I]Denuded?[/I]
---------------------------------------------

So - I'm at a loss - an absolute LOSS! While he mentioned adenocarcinoma on the phone when he gave me the biopsy results, he didn't mention it ONCE today!

I'm off to find a new Dr...
Sorry you had such a crappy doctor Love!. Zoe you are so so right. It's like we have to be instant doctors, keep the emotional stuff to a dull roar, work or raise children....Goodness forbid BOTH!, be proactive about our health and making sure our doctors dont omit very careful details about our diagnosis, have people we dont know jabbing this or that into our nether regions or bits cut out of us, read pathology reports, call specialists, go to what could be life changing appointments and carry on after the fact....And in the midst of all these things enjoy life. Easier said than some days eh!....

***Hugs***

Jess
I'm sorry this was such a useless appointment. You are right: most doctors are completely hasty in their so-called "evaluation" and not thorough at all. You will probably also discover that every doctor follows a different protocol when it comes to dysplasia. I have doctors saying no laser for canal disease, but I went to a doctor who lasered canal disease up to CIN 2 (we'll see how that turned out when my repap w/ hpv test comes back). My gyn, who I used to trust, refused to do anything about canal disease when everything I have read including the ASCCP guidelines require some sort of surgical management of canal disease.

Now for the good news. Your pathology report indicates glandular lesion "only." I think this is good news, because mixed disease is (supposedly) very rare. Not only is it glandular lesion "only," the glandular lesion does not extend into the canal. That's excellent news. Canal involvement is bad and not to be messed with. I am not sure why he told you you had a squamous lesion/CIN 3. Perhaps he saw the "in situ" and automatically assumed it was CIN3/CIS. Perhaps because he took it from the ectocervix, he got confused thinking it must be squamous by default because only squamous cells line the face of the cervix. No, that's not correct; glandular lesions can appear on the face of the cervix and CAN be visible on colposcopy although not often. It depends upon the woman and the location and extent of the disease.

In reality, there is no squamous dysplasia identified, assuming your path was correctly interpreted of course. I hope the report clarifies matters for you.

It does not hurt to get second opinions, but learn all you can so you can make the final INFORMED decision as it is your body, because you will likely get a different opinion from each doctor you seek.
Well, you are right to be concerned about skip lesions, and I always think that whenever repeated high grade or in situ is found on cytology or histology, a gyn-onc consult is prudent...although I was not the slightest bit impressed by the gyn-onc I saw. He was more knowledgeable about genital herpes than he was about genital hpv.

False negatives are extremely common--at least 20%.

Edit: Oh, wait, the skip lesion thing would be much more alarming if your disease involved the canal but it doesn't. Your ECC ACTUALLY DOES comport with the LEEP pathology. I am not sure why your doc told you otherwise...he is confused or did not read the report carefully.

I would follow up with colpo and demand the hpv test at my next appointment whoever it was with.
I vote "yes" to seeking the advice of a gyn/onc since you have the AIS on your pathology report.
[QUOTE=Pickle Eyes;3915960]I vote "yes" to seeking the advice of a gyn/onc since you have the AIS on your pathology report.[/QUOTE]

I second that! :bouncing:
I couldn't wait so I called the Dr. this morning and ran down to get the rest of the pathology reports...

All I can say is I am more upset now than before...

PAP results:
Determination : PAP w/ hpv on ASCUS
Description : Epithelial cell abnormality.
Atypical squamous cells of undetermined significance.
Atypical glandular cells

Recommendation : Colposcopy w/ tissue studies suggested.

So onto my colpo/biopsy results...

Final diagnosis:
A. ECC: Detached strips of endocervical glandular epithelium exhibiting adenocarcinoma in situ admixed with squamous epithelium with focal koilocytic atypia.

B. At 11:00 biopsy: Extensive adenocarcinoma in situ involving endocervical glandular mucosa. No definitive invasion seen.
Well poo.... Oncologist appt. on Thursday morning...

List of question - check
Copies of pathology - check
Insurance info - check
Stern lecture typed of because of the failure of my ob/gyn - check

Contemplating printing up a t-shirt "All I want is a happy cervix" ... I'm sure that will get a few stares...

So is that everything or am I missing something?
Should I try and arrange that proactively? When I called and made the appt. I was only asked about my pathology reports.
Scoped that out already and found a shortcut to the site (means I don't have to drive through the hospital parking lot).:bouncing:

Still waiting on the "new patient" packet in the mail - so I may have to scurry to get slides to them. They DID ask who my ob/gyn was - so maybe they are trying to get them that way - since all of the pathology work was done at the local hospital.
I lived. The ECC was repeated since it was inconclusive.

On the endometrial biopsy, my Dr thinks I did really well but she made me stay lying down a bit because of how much I ended up shaking. As the day goes on the cramps seem to be getting a little worse - I think the Advil is wearing off.

Since my cervix bled again when it was held in place, some silver nitrate was placed on it stop the bleeding. It's only slightly worse right now than a really bad menstrual cramp - but its constant. Cramps at least ease up for me after a few minutes...

Let the waiting begin - back in 2 weeks for the pathology :dizzy:
[QUOTE=luvbug412;4746268]I lived. The ECC was repeated since it was inconclusive.

On the endometrial biopsy, my Dr thinks I did really well but she made me stay lying down a bit because of how much I ended up shaking. As the day goes on the cramps seem to be getting a little worse - I think the Advil is wearing off.

Since my cervix bled again when it was held in place, some silver nitrate was placed on it stop the bleeding. It's only slightly worse right now than a really bad menstrual cramp - but its constant. Cramps at least ease up for me after a few minutes...

Let the waiting begin - back in 2 weeks for the pathology :dizzy:[/QUOTE]

I was supposed to have an endometrial biopsy back in December.
I read up on it and was so, so, SO scared! I read that it's horribly painful.
At the last minute, my doctor changed her mind and decided to do a D&C instead, for which I was unconscious, and which didn't hurt a bit.
The wait for results was hard, but it turned out there was nothing wrong with me except a benign polyp, which was removed during the procedure.
I'll bet you'll be fine. It may not even take two weeks for results- I had the results of my D&C back in less than a week.
Stay strong! Congrats on enduring that horrible procedure. I bet you'll never face anything worse (because for anything more painful than that, they put you to sleep!).

Best of luck!





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