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Just Diagnosed with Adenocarcenoma In Situ- Just Diagnosed with Adenocarcenoma In Situ-

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Unread 09-12-2002, 08:00 AM
Just Diagnosed with Adenocarcenoma In Situ-

Dear Hyster Sisters,

I am so glad that I found this site. I started nosing around right after I had a D&C on the 6th of September. You know, just in case....

I am a mother of two girls (9 & 11), married to the same man for 17 years and I will be 40 on the 29th of September. I have had no problems whatsoever with my periods, no heavy bleeding, no pelvic pain, nothing. I have been on birth control pills since college.

After 2 years of slightly atypical cells on my paps, I had three culpos, one after each of the last three paps and they showed that I had mild dysplasia. The final culpo also showed one cell, one single cell, that showed Granular Dysplasia. That is when my MD scheduled a D&C. He did not find anything since my uterus was completely clear (he did a hysteroscopy as well), but guess what, the pathology report from the LEEP biopsy of my ectocervix came back with Adenocarcenoma In Situ. No one in my family has ever had cervical cancer. My mother was hysterical (that word certainly fits!) I was livid! Why me! I don't have time for this and I feel fine!

My MD has recommended a hysterectomy TVH or TAH he will be deciding on the 16th when I meet him for pre-op. I am now scheduled for October 2nd to go to the castle. Only thing I am glad about is the castle is only 2 miles from my house and that they caught the cancer early.

I would love to hear from anyone else who has been diagnosed with this type of cervical cancer because it is the rarest form. I have already gotten a second opinion from a friend of mine who is also an MD, so I feel that the Hyst. is the best way to go since the word CANCER was brought into my humble life. There is nothing my doctor could have gotten wrong since it is all pathology.

Your site and the other links you recommend have really helped me understand what is going to happen to me. I especially liked the one called yoursurgery.com which gives you a snip by snip (with full color pics) of what they do with a TAH vs a TVH.

I am always the informed consumer. If anyone has any other links to other sites that helped them, please let me know. Thank you to all of the sisters who have documented their experiences. It has really given me a lot of info on what I need to ask my doctor.


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Unread 09-12-2002, 08:42 AM

Welcome to Hystersisters, Angel Heart, the best woman to woman site on the WEB!! I'm glad you decided to post after lurking for awhile.

I'm sorry to hear about your cancer Dx, but we're here to help anyway we can. Please read some of the stories from women with the same cancer you have and visit us on the cancer Concerns forum (go to HysterSisters Forums and click down to the cancer forum). Lots of sisters in that forum will help you a lot. Also, the pre-op forum is great for pre-surgery jitters! Afterall, we all get the same surgery.

With your Dx, I hope your Gyn has recommended a Gyn/Oncologist. This is very important. Nothing beats the experienced eyes and hands of this special doctor. Believe me, it will save you lots of future worry.

I'm so glad you found us. If you are , :cry:ing, need a or a , we're here for you.
Unread 09-12-2002, 09:19 AM
Just Diagnosed with Adenocarcenoma In Situ-

Hi Angelheart,

Welcome! . Like you said you have some positive things going for you. They are catching this early and your youth. Couple that with a good oncologist, your knowlege and this site...watch out!

One suggestion though, I would do some research on children's authors. There is an author who writes small books for children about their fears, like "why is my uncle so sick," my baby brother can't come home from the hospital, my mommy's surgery.
With your own mother being scared, I can't help but think that your two little girls will pick up on her fears. And as you know, children at that age are all EARS!

Oct. 2 is not too far off. I'm sure you have much to do. Please post with any questions and do check out those ladies on the Cancer Concern Forum...they are awesome.
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Unread 09-12-2002, 07:06 PM
Just Diagnosed with Adenocarcenoma In Situ-

I too was diagnosed with cervical cancer (on August 23). My surgery is scheduled for next Monday the 16th. Cancer is a very scary word, but my GYN/ONC says everything should be OK. But as you will see and be told on this site many times, at least go talk to a gynecologist oncologist. If I would have stayed with the regular GYN, I would have been like so many that I have read about that had surgery after surgery. The GYN was going to do mine vaginally too. The GYN/ONC had a fit. Said when there's cancer involved you need to go in and LOOK around. I'm the type that wants it all over with at once. So I chose to stay with the GYN/ONC and let her nose around inside while she's there. I am having a TAH/BSO because it's obvious that my ovaries have already shut down, which concerned her a little more. I too like you had no troubles. I had never even had an abnormal pap before. Mine started in March I didn't have a period. Went to the doctor in May. Thought I may be pregnant. Didn't feel bad though and after several tests, here I am. So glad I found this site. I have had so many questions answered and just feel like somebody finally understands what I'm thinking and why I ramble on so much! Definitely check out the Cancer Concerns Forum. There's a lot more information there. Good Luck with everything and feel free to drop me a personal message if you need to.
Unread 09-12-2002, 07:49 PM
Just Diagnosed with Adenocarcenoma In Situ-

Hi Sister!

I was diagnosed with Carcinoma-In- Situ(Cin III) and severe dysplasia in April. I had a Colposcopy and then a Cold Knife Cone Biopsy in May. My pathology report said I had clear margins but the "bad cells" were throughout the Cone. My recommened a TAH, but I couldn't have that until my cervix healed completely. I had surgery on August 12. For me it was the best decision because I couldn't deal with the possibility of it becoming invasive cancer. Like you I had no symptoms, no pain, nothing! I was really caught off guard and definitley was on the emotional roller coaster. Thank God it is over!! My pathology report came back "good" from surgery so they said I shouldn't have anymore problems. I've got my fingures crossed. I still have to have an annual pap test to make sure it doesn't come back on the vaginal walls.

I typed in dysplasia on the internet and found alot of information and even found a diagram on the different stages of the cell changes. It scared me, but I knew what I was dealing with and it helped me make the decisions I had to make.

I will be thinking of you, keep us posted on how you are doing and if I can answer any questions let me know.

Unread 09-12-2002, 07:50 PM
cervical cancer

Angelheart and Cindy,

I can relate !! In October of 2000 I had my regular physical and pap checkups. When My Dr. called, and said "you'd better find yourself a GOOD gyn" I was shocked --- I picked up the report of my pap with "cervical carsinoma insitu" written across the top. I was floored to say the least ---- I'd never had an abnormal pap, no real problems with periods ( though I had some severe pain and was passing some large clots ..... which is what prompted me to get my yearly early). I also remember, I was having some spotting between periods -- another concern that lead me to my month early check-up.

I found myself a good gyn ( my cardiologists wife !! )
she was blunt and to the point --- which I perfer, but boy did I that afternoon in her office !! To make one longgg story shorter ---- I had a LEEP-- didn't take care of the cancer.... Then had a cold knife Cone surgery----didn't take care of the cancer. Insurance wanted me to have more non-evasive surgeries, but my Dr fought for me. I asked her if this was the only way to go-- if she were me would she have this done? She said definetly !!

I wasn't sure.... discussed with my family, husband, and finally got another opinion form a different Dr. Everyone concured, hysterectomy was my only option. I had absolutely Everything out --- ovaries and all ( don't want ovarian cancer sneaking up on me in the future). I must tell you gals ---- I have never felt so better in my life !! Not to mention I just had my one year Hysterversary 8/21/02 and check-up ! Got my pathology report back just last week --------- totally NORMAL !!!!!!!!!!!! Of course we will always have to have anual paps ( having had the "carsinoma" word engraved on us) ----- but I am here nearly two years after first being diagnosed with the first stages of cervical cancer !!!!!

I'll tell ya a few things I do to try and keep myself healthy: first and far most I exercise ! ----- walk 3 -5 miles a day, 5 days a week; am starting to work with weights for strength training, and do some yoga. Second, I changed my eating habits !--- fish at least 5 days a week, chicken once a week, and the other day is totally veggie. Total low-fat diet, and vit. supplements daily( vit. C, vit. E, fish oil, calcium, B vits. , multi vit/min., and a joint supplement.

Sorry this is a little winded ---- just thought you wanted to hear form someone who has gone the route ya'll might be taking-- I will still get my anual paps every year !! Even though there is nothing left "in there" you still have the possibility of a cancer, vaginal or otherwise......

as if no one is watching -- does a heart good !!

Best wishes ladies's to ya !!
Unread 09-13-2002, 05:49 AM
Just Diagnosed with Adenocarcenoma In Situ-


Thanks everyone for hearing my saga and responding. I will call a gyn/onc and see what they say. I did feel that trying to do a TVH with In Situ was probably a bad idea. However, while they are in there, can't they use a hysteriscope and look around anyway? Once your uterus is gone, your vagina is a canal into your abdomin, until they tie it off. My next thought, which some of you have mentioned is, should I have everything out now? Do you increase your risk of ovarian problems later in life if they leave them in? I guess I still am weighing the risks and advantages of HTR vs keeping the overies. I will be forty soon, so what do I have, probably less than 10 years before I hit menopause anyway. I hear that the HTR patch is great. I have a friend that had an 8 lb tumor (non cancerous) removed from her overies several years ago and they took everything except her cervix. She said they nurse slapped a patch on her hip the day after her surgery and she has not had a single symptom of the change. The thought of later having to go through more surgery for the overies to be removed is daunting.

Good luck on Monday Cindy5148, we will be praying for you and your family, I will look forward to hearing all about your situation when you are well enough to type. Monday I go in for my pre-op.

Angel Heart
Unread 09-13-2002, 07:19 AM
Just Diagnosed with Adenocarcenoma In Situ-


Your story sounds very similar to mine. I only wish I had had someone respond to me with such a problem. I have gotten tons of information and most importantly...support from this site.

I too was diagnosed with adenocarcinoma in-situ and severe dysplasia in May. I had had a bad pap smear in college and had laser surgery. I started taking birth control pills in college too. Since all of that I got married, had three children and then boom the bad pap smear in May. I was the one time in all these years I didn't worry about the pap smear being bad.

On June 4th I had the cold knife cone biopsy done. The path. report came back adenocarcinoma in-situ and squamous cell carcinoma. The margins were clear, buy the cells were scattered and the dr. said they couldn't be sure there weren't any more cancerous cells higher up in the cervix. I didn't have invasive cancer thank goodness. My very conservative dr. who doesn't like to prescribe an aspirin said he strongly advised a TVH especially with the squamous cell carcinoma. I knew if he said this he meant business. I was scared, confused, shocked, depressed...you name it. Even though my wonderful DH and I thought we were done having children (we have three: 13, 10, and 4), I thought this was like slamming shut the chapter in a book I wasn't finished with. I had so many doubts...I went to the library, the book store, this site, the internet sites, tried to ask people I knew questions. My relatives were most generally lousy in making me feel better (a story in and of itself). On one of my drs. appointments I just broke down and cried in front of him and told him I really didn't want this surgery, but didn't know what else to do. He told me it was my decision and if I needed more time to think it over we could put the surgery off....I thought he was going to say until next summer, but he said we could wait a month or two.... This really hit me hard. I knew how serious my situation was and that I wanted the cancer cells out for me and my family's sake.

On July 10th I started me last period. This was the birthday of what I now knew would be our last child. It was bittersweet. On July 24th I had my surgery. Everything went well. My dr. left the ovaries. I am very happy about that. I really didn't need or want to deal with all the hormone issues. They found no more cancer. Recovery went pretty well. I didn't have a lot of physical pain. I felt very sad and exhausted. Each day gets better, but it takes awhile. For me I still have not accepted that I had life threatening cancer cells inside me. Several weeks after my surgery I sat up one night frantically visiting sites on the internet to see if there wasn't anything else I could have done, but everything pointed to having a hysterectomy because of the seriousness of the situation. Sometimes the only way I can be comforted is to look at my children and husband and thank God that I caught this cancer in time so that we will have years to plan, dream, do, laugh, and be together.

Best Wishes,
Unread 09-13-2002, 08:29 AM
Just Diagnosed with Adenocarcenoma In Situ-

I asked my doctor about the risks of ovarian cancer, when deciding whether to keep ovaries or not. He told me the tissue of the cervix and vagina are the same. The ovaries are of a totally different tissue and should not be affected. At age 40 I decided to try to keep my ovaries, but left it up to my descretion when he got in. I told him if they looked abnormal at all to take them. I ended up and got to keep only my left ovary and tube, the right one had been damaged from my appendix rupturing when I was 21. At any rate I have had no hormone problems. I know some women say it takes awhile for the ovaries to wake up from surgery, but I have not had any problems. I am Sooooo happy that I don't have to deal with HRT issues at this time. I have just been so stressed by all that has happened that it has been a relief that at least one thing went right.
Keep us posted!

Unread 09-13-2002, 12:33 PM
Thanks Leilah1 and Mypee!!!

You guys have been terrific. Leilah your story is almost the same as mine!!! I however know that I do not want any more kids. My DH said about a year ago, "Maybe we should think about having another baby." My reaction was the opposite of yours. I sat up and said, " Lets get a puppy instead." He agreed and we got the cutiest pug on the planet. He is our baby. We already have two kids, and I finally feel like I am getting my life back since they are a little older now. We spent ten days in Europe traveling over the summer and there is no way we would have been able to do that with a baby. So anyway, I am OK about not being able to have more children.

Leilah1, did you end up having at TVH or did they end up doing a TAH? Were they able to get in there and look around?

Have you seen an oncologist or did they not think it necessary?
I have an appointment with one on Wednesday for a consult. That will be by 4th medical opinion. I guess you can never have too many.

I am feeling better about having the surgery after looking at what they do in mysurgery.com and especially after talking to women like you, but I am now nervous that there is something else lurking out there that they don't know about. I guess it is fear of the unknown, that haunts me at night.

I too am most interested in living on to see my children grown. That is my top concern. My husband could go on with out me, but my children's lives would be terribly altered without me there to guide them. My husband's mother died of an blood clot post hyst when he was 9. I can't help thinking about that since today is my youngests 9th birthday. To die and leave my children makes me cry just thinking about it.

Thanks ladies,


PS Any other tips would be greatly appreciated.

Did you have to have an enema before surgery? That is one thing that I hated about giving birth.

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