Newby to the board: Need some advice

Hi there - Just recently found this board...it is incredible how much information is here & how much support is provided - Wow!
I have a question - perhaps it is a common situation & I am still learning about it.

I had a pap come back in January with ASCUS - HPV+ (& one of the strains likely for cervical cancer). Scheduled and did the Colpo - doctor found many white areas - talked with me about LEEP and likely next steps...I expected unpleasant results...and yet...biopsy came back with NOTHING.

Doc said we should repeat the pap again in 3 months.
Did that 1 1/2 weeks ago...this time pap came back with Glandular unspecific (Not sure if I am using the right term) & same HPV + as before.
I got the impression Doc thought this was a little unusual to have first one and then the other. She said she wanted to see me right away...I'm now scheduled again for another colpo for this Friday where they will do the biopsy up through the cervix and into the lining of the uterus as well.
I've been noticing some pressure and dull pain in my lower abdomin lately...not sure if it is really real or if I am just really nervous and hyper sensitive about every twinge.
Other history: I'm 40 this year...I've gotten regular paps - I've had three other abnormal paps in the past...but the last one was more than 12 years ago. Each time, showed normal the next time around.

If anyone has any thoughts or advice, I would really, really appreciate it!
Thanks

Hi Rebtk, I'm glad to know your doctor is being proactive and having you come back in for another colpo. I hope (and pray) she does an ECC while she is there. It sounds like it, but ask for it by name. ECC stands for endocervical curettage. It is the only nonsurgical way to sample the cells in the cervical canal (where the glandular cells are). Paps do not specifically target glandular cells, but an ECC does.

It isn't uncommon for a woman to have squamous cell and glandular cell problems. Many ob/gyns do not see a lot of glandular results, so they kind of panic when they see it. I figure that is just as well, because the next step is to send you to a gyn/oncologist who is much more familiar with glandular problems. You want an expert handling your case, anyway.

I've been interrupted several times while typing this. I hope I've made some sense.

I'm glad you've found us and I hope we can give you information to help you understand what is going on, some questions you can take to the next appointment, and better understand your treatment options.

Write back and w'ell do the best we can to help!

Hello Pickle - just a wee update (if you recall me ) niece in the UK with advanced cervical adeno C. We visited her at Xmas time- she has done remarkably well up to now with many new chemo treatments along the way,sadly it has now returned in the Liver w/many complications-she still fights on and soon will be a year and a half since diagnosis .I posted a while back and dont come on here as much recently- My best wishes to everyone here . Kt

Thank you for your reply PickleEyes - that helps to know it is not something too strange or "out there" when both types of cells came back.
Appointment is Friday - I'll ask for the ECC by name - helps so much to feel like I at least "have a plan"...this waiting and wondering stuff is just no fun.

One other question if anyone might know...is there any genetic family relationship to choriocarcinoma (cancer of the lining of the uterus, cancer spreading to other areas) and issues with cervical cancer? - more specifically - my Aunt on Mom's side had repeated problems with molar pregnancy that turned into choriocarcinoma - it was really quite bad. She was successfully treated with Methotrexate - happened many, many years ago. I'm curious if there is any family relationship between the two.

Hi there...Had colpo on Friday...Dr had already planned on doing the ECC (still, thanks pickle Eyes for mentioning it) and she did a biopsy inside the uterus. She found some additional spots on the cervix and took those too. The biopsy inside the uterus was quite uncomfortable - felt like they were taking out my tonsils too... It certainly pinched and pulled...Not something I'd want to do everyday certainly, but it was tolerable.

She had some problems stopping the bleeding in some areas...they must use some type of cauterizing material...She's a good humored doc...said not to worry if it feels like I am leaking gravel - ha ha...it's just the cauterizing material.
Has anyone else had that happen?

Sounds like some of the samples did not appear the way she expected from the uterus. She wants to see me back in a week.
It is hard to be patient with this stuff, isn't it?

The "gravel" discharge is from the Monsel's solution. When it mixes with blood the results looks like used coffee grounds: dark, clumpy. That discharge should last about a week. You'll most likely want to wear some sort of protection to catch the discharge. It is difficult to wash out of clothing.

I'm glad you have a quick appointment with the doctor. That gives you less time to wonder about the results. When is your appointment?

How are you feeling right now?

Yup - Coffee grounds is about right
Feeling a little crampy & occational sharp pain on one side - I'm figuring it is just from all the maneuvering they had to do for the testing. Otherwise, doing ok.
My follow up is this Friday.

Take it easy and rest. Your body needs to rest. Are you taking anything for your cramps? I suspect over the counter meds will give you some good relief.

Hi there -
Got results back of last weeks biopsy today. Overall, I think the news was good - I was prepared for a whole lot worse. I'm not sure about the advice I got today and wondered if anyone had any thoughts about it.
pathology sheet says:
Endometrium biopsy - scant fragments of inactive endometrial surface epithelium

Endocervix curettage - fragments of benign endocervical epithelium

Cervix at 12:00 biopsy:
Squamous intraepithelial lesion, low grade (CIN 1)

7:00 "remote" cervix:
Squamous intraepithelial lesion, low grade (CIN 1)

Cervix at 6:00: Endocervix with chronic cervicitis

Comment listed on pathology report: Recent pap smear from 5/5 contains scattered clusters of glandular cells with features of nuclear enlargement and vesicular chromatin. These could be reactive endocervial cells from the area of chronic cervicitis. No squamous intraepithelial lesion was identified.

Over the last 8 months - 1 pap abnormal squamous cells, Colo coming back normal; repeat pap showing atypical glandualar cells and now this result above.

Doctor wants to take a "wait and see" approach - agrees with pathologist that the glandular cell abnormalities might be just from inflamation. Took a few swabs today to check on any other infections, etc.
Wants to do a pap again in 3 months.
Talked to my mother in law who is a recently retired oncology nurse who thought wait and see was not a great idea - Her comment was "Why? - wait till it gets worse and then catch the problem?"
I'm 40 years old and have no concerns about further fertility.I'm not sure I want to keep going on the merry-go-round of abnormal/normal/wait and see.

Any chance the normal/abnormal stuff is a result of having early cancerous cells but we are just not hitting the right "spot" on the pap or on the biopsies?

I'm so new to this stuff - am I overreacting?
appreciate any advice or thoughts?

I think with those results that the wait-and-recheck is standard results. The chronic cervicitis in the endocervical cells is what makes me glad to see that you have 3 month follow ups, not 6 month ones.

Without more information, I'd say keep the appointment in 3 months. In the mean time, get as much information as you can so you can go to the appointment armed with questions. Have the doctor do another colpo + ECC. Everytime you have a colpo (since you have glandular problems) the ECC should be done (in my opinion). I'd even encourage you to see another doctor's opinion.

Well...I'm back for more help.
Since May, I've gone from CIN 1 to CIN 3.
My results from May are posted earlier. I had a colo again in August...LEEP last week.
Results are as follows - I'd really appreciate any thoughts you have.

Doc says we are hopeful all is gone. Next step pap every 3 months for yr 1 and every 6 months for yr 2. If any come back with issues, recommends hysterectomy. I'm high grade HPV +

Diagnosis sheet from LEEP:
A.Endocervix:
Rare foci of severe squamous dysplasia involving surface epithelium. Negative surgical margin

B. Ectocervix:
Severe squamous dysplasia involving endocervical glands Surgical margin negative.

Microscopic:
A. The cone biopsy has sampled mostly endocervix and extreme cautery artifact destroys much of the surface epithelium making evaluation problematic. A small focus of surface epithelium is intact and is of squamous type with severe squamous dysplasia. Parts of the surfact nearby are also denuded.

B. The cone biopsy has sampled cervical tranformation zone and sites of prior biopsy are identifiable by the presence of hemosiderin. In a few areas, the squamous portion has changes of condyloma and rarely a focus of severe squamous dysplasia is found filling an endocervical gland. Surgical margins are negative.

Comment:
Previous pap smears have demonstrated atypical squamous cells and atypical glandual cells. The current cone biopsies show severe squamous dysplasic with most found inside endocervical glands with only small amounts onf surfact involvement higher up in the endocervix.

Since May, I've gone from CIN 1 to CIN 3.
My results from May are posted earlier. I had a colo again in August...LEEP last week.
Results are as follows - I'd really appreciate any thoughts you have.

Doc says we are hopeful all is gone. Next step pap every 3 months for yr 1 and every 6 months for yr 2. If any come back with issues, recommends hysterectomy. I'm high grade HPV +

Diagnosis sheet from LEEP:
A.Endocervix:
Rare foci of severe squamous dysplasia involving surface epithelium. Negative surgical margin

B. Ectocervix:
Severe squamous dysplasia involving endocervical glands Surgical margin negative.

Microscopic:
A. The cone biopsy has sampled mostly endocervix and extreme cautery artifact destroys much of the surface epithelium making evaluation problematic. A small focus of surface epithelium is intact and is of squamous type with severe squamous dysplasia. Parts of the surfact nearby are also denuded.

B. The cone biopsy has sampled cervical tranformation zone and sites of prior biopsy are identifiable by the presence of hemosiderin. In a few areas, the squamous portion has changes of condyloma and rarely a focus of severe squamous dysplasia is found filling an endocervical gland. Surgical margins are negative.

Comment:
Previous pap smears have demonstrated atypical squamous cells and atypical glandual cells. The current cone biopsies show severe squamous dysplasic with most found inside endocervical glands with only small amounts onf surfact involvement higher up in the endocervix.