Diagnosed w/ Adenocarcinoma in Situ, 2nd opinion?

MsStevious · New User Joined: 16 Oct 2009 Posts: 5

My LEEP results came back saying that I had adenocarcinoma in situ, doctor said that it was the severest of severe dysplasia, almost invasive cancer. First off, I have always had a funny feeling about my doctor... he just seems careless and unprofessional. I asked when my next pap would be and he said he wasn't going to do the next one for another 6 MONTHS to check if its still there or not. Does that seem bazerk to you? And being that it was that severe you would think that it would be alot sooner. I just don't get it! Should I consult an Oncologist for further testing? Should I just see a new GYN? Does 6 months seem that he's stretching it too far? I need some advice. What do you think I should do?

rockstar

Hi MsStevious,

I for one try to play doctor's advocate a little too much sometimes because I know both ends of the doctor-patient relationship (not that I'm a doctor, but from my experience in the health care industry).

But from what you have told us, I would absolutely recommend getting a new gyno.

Yes, it is typical for a doctor to recommend a patient to come back in 6 months after an abnormal pap, but a doctor can also see a patient in 3 months time if they want. I don't know what is in your medical history, but you can either A)stick with this doctor and ask for a 3 month pap or B)get a second opinion from another doctor.

You should trust and feel comfortable with your doctor. After all, it is your health in their hands.

And I wouldn't necessarily recommend going to an oncologist just set at you are in situ meaning the abnormal cells are just on the surface of your cervix. A precautious gyno would be who I recommend.

Hope this helps you!
_________________
Stage 1B1 Adenosquamous Carcinoma of the Cervix.
Diagnosed 5.7.09 @ age 20
Radical hysterectomy on 5.15.09
Wedding date: July 23, 2010

Shellmybell · New User Joined: 11 Nov 2009 Posts: 4

Hi MsStevious-

I was also just diagnosed with adenocarcinoma in situ. I don't know how much you know about it but I have done as much reading online as I can (unfortunately I don't feel like there is a wealth of information) but AIS is Stage 0 cancer- some people refer to it as "precancerous" but the fact is that the cells are cancer and they just aren't spreading (that's what in situ means-- "in waiting"). My doctor explained to me that if the cells went untreated that they would, eventually, become invasive cancer. Obviously, I am no doctor and I know nothing about your individual case but from the little that I know a cone biopsy is usually the course of treatment. You can definitely not just NOT treat it. Get a second opinion. Hope this helps!

MsStevious · New User Joined: 16 Oct 2009 Posts: 5

Thank you girls, for your advice and support.

My previous post was actually wrong. I was actually diagnosed with Adenocarcinoma in Situ AND CIN 3. For some reason, I thought they were the same thing for quite sometime, but I now know the difference. I still can't believe that I had to find out the difference between the two online and not through my doctor. That was quite upsetting, but none the less... I know. I've done my research and you are right, there is not alot of information about it. I was trying to see what the reoccurance rate for AIS was, but couldn't find anything.

I had a LEEP done to remove the spots... should I have had a cone biopsy done instead? What is the difference? Which is better?

I have my follow up appointment from my LEEP coming up this Friday. Could you give me any advice or questions I should be asking him. I will definitely be asking him if he could see me in 3 months time instead of 6 cause if he doesn't I will for sure be getting a second opinion, but I really don't know what else to ask him. And it never fails, I always think of a ton of questions to ask him AFTER my initial appointment. Which is very frustrating.. so I was hoping you girls could help me prepare myself this time around. Surprised

rockstar

Hi MsStevious,

I am sorry your doctor isn't living up to his duties. The right doctor makes all the difference during this time.

I know if you google adenocarcinoma there isn't a lot of information, but think about it as being a super specific word. Adenocarcinoma is actually a more common type of cervical cancer and reacts exactly the same as squamous carcinoma. So when you look up information on cervical cancer, you can basically assume they are talking about adenocarcinoma even if they do not mention it by full name. So for example, if you are trying to look up re-occurrence rates, just look up regular cervical cancer re-occurrence rates.

A cone biopsy is basically a biopsy of a bigger sample of your cervix in a cone shape. It is used to get a better idea of how invasive the cells are into the cervix. A LEEP actually refers to the tool they use, Loop Electro-surgical Excision Procedure. Normally with a LEEP they basically scrape the surface of your cervix. However, I recently learned they they can now use a LEEP (the tool) to preform a cone biopsy, but that is only sometimes. Generally a cone biopsy will not be preformed unless the results from the LEEP indicate it is needed.

For your appointment, ask why the 6 months vs. 3 month follow-up, ask anything you don't know about the disease already, ask treatment options, results of LEEP. and bring a note pad, that is very helpful. As far as writing down what he says and remembering questions.

Good luck at your appointment
_________________
Stage 1B1 Adenosquamous Carcinoma of the Cervix.
Diagnosed 5.7.09 @ age 20
Radical hysterectomy on 5.15.09
Wedding date: July 23, 2010

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