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Cancer: Cervical & Ovarian Message Board

Cancer: Cervical & Ovarian Board Index

Hi, I'm new to this board. After years of normal annual paps, I had a pap smear with ASCUS two years ago(with an HPV negative test). Due to my having exposure to DES (synthetic hormone given to pregnant women in 70's to prevent miscarriage, linked to cancer, infertility and defects in offspring), my doctor performed a Colposcopy and ECC. Results were fine. I returned 6 months later with a normal pap result.

I went for my annual pap two weeks ago (1 year since my last pap) and received a pap report last week of Atypical Glandular Cells (undetermined significance) . Again, HPV testing was negative. My Doctor performed a Colposcopy, ECC and Endometrial Biopsy yesterday. She said the Colposcopy looked good but still wants me to see a Gynecological Oncologist, regardless of my biopsy results! She communicated that even if the results are all normal, I am not in the clear due to the nature of AGC cells. She explained that aggressive follow up will be needed, as serious disease often presents within 1.5 years following an initial AGC pap result.

Having read up on AGC and the statistics, I am freaked out. I have not had children yet and am frightened by the thought of my fertility being at stake. I feel that my fear may be irrational. However, hearing the word Oncologist would alarm anyone, no? Is my Dr. being a bit alarmist? The reality of having had no prior precancer/cancer & being HPV negative to suddenly having a doctor mention Oncologist seems a bit over the top! I'm a bit of a nervous Nelly and am doing my best to not be irrational but don't want to be in denial either! Has anyone on here had a AGC without it being a major ordeal? Any advice? Opinions? anything would be appreciated!

All that I have read from you ladies has been unbelievable! You've all had some serious obstacles, sadness, second chances, grace, tough decisions and serious learning occur in your lives. And you're all so helpful to one another. What an amazing place I've found!
I am so sorry that you are having to deal with this! ((((((hugs)))))))

I think going to the gyn/onc is prudent for two main reasons: the glandular involvement, and the DES factor.

Most gyns aren't sure how to handle glandular involvement. They don't see if very often. I say "fine." Get me to a doctor who knows the disease process and what to look for, how to treat it, given my personal situation (age, desire/lack of fertility, etc).

It is possible that you might be able to have a CKC or a trachelectomy to spare your fertility, at least for a time. I'm sure Zoe and some other ladies will jump in and share their trach information with you.

I was 44 when I was diagnosed with adenocarcinoma Ia1. I had a history of 25+ years of annual paps that always came back good. My doctor (a GP) did the HPV test with my pap that year. The pap was normal, but the HPV test was positive for high risk HPV. Long story short, I ended up with a gyn who did a colpo (didn't need to take a biopsy - nothing was wrong) and an ECC (thank God!). The ECC came back adenocarcinoma in situ. Two weeks later, I had the CKC. Two weeks later I was sitting in the gyn/onc's office. Two months later (I was allowed to wait a few months to get my life in order before needing the recovery) I had a total LAVH (uterus and cervix only). I didn't need chemo or radiation. My one year post-op is next month, but June 18th is my hysterversary and my first official "no evidence of residual tumor" date.

I hated hearing the words "biopsy" and "oncologist" for the first time. I wept when I went to the cancer center for my first appointment. I was told to go see the "financial counselor" before seeing the doctor. I disolved into a puddle of tears thinking I'd need a finanial counselor to pay for "this". It ended up, she offered me hugs, and tissue, and water, and then told me I was responsible for my regular ol' $30 co-pay each time I saw the doctor. WHEW!!! I now kind of laugh about me being that worked up, but I also tear up typing this remembering the panic I felt.

Anyway, all of that to say that I think going to the gyn/onc is prudent.

Write back. It is getting late and I'm losing focus on what I'm writing. I know there will be many more ladies who jump in and share their stories, and offer words of encouragement, and insight for you.

I'll check back tomorrow. Until then, you are in my prayers!
[QUOTE=7588;4008686]Yes, Lily21 it does suck! You're so young! So unfair! Please tell me about your experience. I am relieved by the thought of fertility saving options! Thanks for the kind words![/QUOTE]

Well, I had my first pap smear ever at 26. Not having one wasn't really that risky for because I don't have the DES issue and I didn't have sex until I was 25!!! That's right. I'm lame. ;)

Anyway, my pap result was ASC-H which basically means they can't rule out high grade abnormalities. They didn't do an HPV test. So then I had a colposcopy. She took 2 biopsies. One came back CIN 1, and one came back CIN 2. Because of the CIN 2, my gyno recommended a LEEP. I seriously contemplated not having it done, but my gyno said she would be as conservative as possible and remove only about the size of a dime.

The LEEP went fine, but when they did the pathology on it they discovered adenocarcinoma in situ. BUMMER. I thought I was done. So then I had a cold knife cone biopsy to remove a much larger piece of my cervix. The surgery wasn't really a big deal. I got the good news of "clear margins" meaning they think they got it all!

So now the plan is for me to go in every 3 months for a colposcopy, pap smear, biopsy if needed, and ECC. I just got my 3 month follow up results and everything was good. :)

My gyno and one gyn/onc I saw basically told me to hurry up and have kids and then get a hysterectomy ASAP. The other 2 doctors I saw seemed to think there was no reason to rush. I tend to agree with no rush opinion because those were the 2 good docs I saw. The other two were CRAP.

I've also had 3 doctors (my intial gyno and 2 others) give the opinion that my cervix still looks good and that they don't think I'll have any problems during pregnancy! Woo hoo!

So things for me are looking good. :) Though I seriously would be completely crazy by now if not for the wonderful ladies on this board.

I am so glad you are seeing the gyn/onc. I suggest at least 2 gyn/oncs. I've seen quite a few doctors as you can tell. ;)

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