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infoforme62 06-24-2008 04:39 PM

It is only in the case of invasive cancer of the cervix that hysterectomy may be the treatment of choice. My doc says I don't have cancer? What does this mean? :confused: I was told I had CINIII & needed cone to determine type of hysterectomy to have. Cone on Monday, Hysterectomy on Wed. within 72 hrs. Anyone with info please respond. 45, 2 kids, husband vasectomy.

Pickle Eyes 06-24-2008 09:37 PM

Re: hysterectomy
First of all (((((HUGS to you Infoforme))))) be sure you ask your doctor every question you have. If you don't understand the answer, ask again. Have your questions written down and have him/her help fill in the answers on your paper. If you aren't comfortable with your doctor, get a new one. If you haven't gotten a second opinion, I highly suggest that. Matter of fact, with CINIII, I highly suggest you seek the opinion of a gynecological oncologist.

When are you scheduled for your hysterectomy? How will your doctor do the surgery? what does he/she plan to take during the surgery?

If you don't know, call the office and find out.

Next, it sounds like you have CINIII which is the highest level of precancerous cells. Some people say adnocarcinoma in situ (also called AIS) is the highest level of precancer, others say it is the lowest level of cancer (Stage 0). Sometimes treatment for CINIII/AIS a cone biopsy (or LEEP). Sometimes that doesn't get all of the leisions/atypical cells and the doctor will then do a hysterectomy.

I'm going to quit talking in generals and will just share my story, because it is similar to yours. I apologize now for the length. I tried to break thins up into shorter paragraphs for easier reading.

I am 44, married, never had children (partially by choice, partially by chance). I've ALWAYS had good pap smears.

In December, my doctor did my Pap and did the HPV/DNA test for the first time. Pap came back good, as usual. HPV/DNA came back as positive for high risk HPV. Normally, the doctor waits and rechecks HPV test in 3-6 months. Since hubby and I totally freaked out, the doctor said I should go ahead and go to a gynocologist for a colposcopy and biopsy with a possible ECC (endocervical curettage).

The colposcopy "looked so good" the doctor didn't need to take any biopsies of the exocervix (quotations are the doctor's words). "Just to check" she decided to do the ECC. It scrapes the endocervical canal to check for atypical cells which can't be seen by the colposcope. (think donut or bagel: exocervix is the frosting on a frosted donut; endocervix in the inside of a tiny donut hole, beyond where you can see from the surface).

The ECC came back as "atypical glandular epithelial lesions" and adenocarcinoma in situ (AIS). That means my precancerous cells were glandular, not squamous. Something like like 80% of all abnormal paps show squamous cells. Only 20% show epithelial cells. Epithelial cells are columnar (like a column) and the secrete mucous. Atypical cells are more difficult to see/find/treat. They also grow faster than squamous cells. AND they grow more irratically (my words, not any doctor's description). They "skip" from one lesion across good cells to another location. They do not grow adjacent to other lesions.

Anyway, I was diagnosed with Atypical Glandular cells and AIS. A few weeks later, I had my first cold knife cone biopsy. Some doctors do a LEEP or cryotherapy to take this sample. Other doctors do the cold knife cone (like my doctor did) because it preserves the edges of the tissue sample to see if there are "clear margins", margins without atypical growth at the edge of the sample. LEEP singes the edges so they aren't as easy to read. Well, my cone showed one lesion: 1.6mm across x 1mm deep. This is the thickness of a wooden pencil's lead! My margin was clear, but barely. That lesion gave me the diagnosis of adenocarcinoma Ia1 (cervical cancer, early stage). She sent my records and me to a gyneoclogical oncologist.

The gyn/onco said I was going to have a hysterectomy one way or the other. We just had some choices (and a little bit of time) to decide how to do it.

1- radical hysterectomy to remove cervix, uterus, ovaries, tubes, and the fatty tissue in the abdomen (that is part of the reproductive organs - not my fat tummy! ;) ). Any time in the next 6 months. Preferably sooner than later.

2- Cone biopsy on a Tuesday, hysterectomy the next day (hyst had to happen within 48 hours after the cone, or there would be too much swelling to get in there - or we'd have to wait 6 weeks! NOPE!). Some time in the next 6 months.

3- Wait 3 months (to heal from the cone), do another ECC. If the ECC was ok, then do the hysterectomy. If the ECC came back with abnormal cells, do another cone, then the hyst. At the end of the 3 months, up to about 6 months.

My doctor said she'd pick option 3 because it had the possibility of fewer sedations. *I* picked option 2 because if I was going to have the hyst any way, I wanted to do it during my summer vacation (I'm a teacher) and be recovered than to wait. Kind of a get-it-over-with mind set.

I made my decision about surgery back in April, and book the surgery for June.

Well. That's what we did. I had my second cone biopsy on Tuesday the 17th and the hyst on Wed the 18th. I returned home on the 20th. I'm sore, but SOOOO glad the cancer is gone! (I don't have the final pathology report, but this is my gut feeling based on some things the doctor said about how the biopsy went <crossing fingers and saying prayers>).

It took me a while to understand how/why they needed to do the second cone if they were going to do the hyst anyway. I think I understand it, now. The second cone determines if there are more cells and how deep they are. This tells the doctor if he/she can do a simple hyst (uterus and cervix) or if he/she needs to do a radical. If any lesions are found and they are less than 1mm deep, then the simple hyst is done. If the lesion is larger than that, then the radical is appropriate.

I know this is INCREDIBLY long, but I hope it helps you. Please feel free to ask any quesitons you can think of. Also, you might check the Cervical Cancer board here at There are so many helpful threads and women over there.

I know you are afraid. I know, personally, the more information I have the calmer I am. So I wish you peace and understanding.

infoforme62 06-25-2008 03:17 PM

Re: hysterectomy
Wow pickles, you sound like you have gone through what I'm going through. You are so well informed & you go girl, you have really helpted me out. You have been sooooooooo helpful, you just won't imagine. Is your recovery going well? My cone is going to be done on Jul 14th & surgery 2 days later on the 16th. Just found out last year that I also have HPV. What a mess. Hope you are having a good recovery. God Bless & my prayers are with you.

Pickle Eyes 06-25-2008 07:33 PM

Re: hysterectomy
I'm so glad all of that typing helped! ;) Seriously. I figured if it didn't help you, it might help someone else.

I'm going to be totally honest. I had almost NO knowledge of HPV prior to January of this year (just 6 months ago). Everything I've learned has been since mid-March when I got my first biopsy back. Please, feel free to ask any questions. I'll do my best to answer them.

I'm glad to know you have a little while before your biopsy and surgery. It gives you a little bit of time to learn about what your biopsy reports say and ask the 5million quesitons I'm sure you have! ;) Have you actually seen your pathology reports yet? If not, ask for them. The doctor's office might be able to fax them to you, or you could go by the office and pick up a copy. You have a right to have a copy of them. I highly suggest you start a folder to keep all of your reports and information in.

Anyway, enough for now. I'm glad you have some information that has helped ease your nerves! (((hugs)))

jamie7805 07-28-2008 06:25 PM

Re: hysterectomy
that was very helpful, I am going thru the same thing right now. I had one leep, and I am going to have another one on the 7th of aug. If I still have the cells, then they will do the hysterectomey. I have 2 children, and my tubes are tied, so I am not worried about it, as long as I am healthy to raise my children. I liked your story, it gives me a lot of hope!

Pickle Eyes 07-28-2008 06:42 PM

Re: hysterectomy
Hi Jamie! I'm glad you've found these boards. If you have any questions, please ask. There are many wonderful women here who will be glad to help as best they can!

jamie7805 08-05-2008 08:06 AM

Re: hysterectomy
Thanks, I am having another leep on thursday, I am a little scared that it won't all be gone, and I will have to have the hysteretomey!

Pickle Eyes 08-05-2008 08:39 AM

Re: hysterectomy
Best wishes on Thursday, Jamie. Check in with us afterwards, ok?

jamie7805 08-11-2008 05:08 AM

Re: hysterectomy
I had my leep, and the doctor said he feels good about it, he thinks he got it all. He is going to give me a call Tuesday (tomorrow) and let me know the results for sure. I am crossing my fingers. How are you?

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