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I would appreciate any advice (long) I would appreciate any advice (long)

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  #1  
Unread 07-03-2002, 02:46 PM
I would appreciate any advice (long)

I posted a few weeks ago about having just had a LEEP for Carcinoma-in-Situ of the cervix. My path came back with unclear margins and endocervical gland involvement. So today I had an appt with an oncologist. I have been looking forward to this appt for weeks, and he is doing nothing. I can't figure out why he agreed to see me. He saw my path report prior to our visit. If he wasn't going to do anything different why bother?
And to make matters worse, I asked him how they knew, since my margins weren't clear, that there wasn't something worse that has not been diagnosed. Do you know what his response was? "We don't". We don't? What kind of answer is that? So I say, well, why wouldn't you repeat the cone then, and he said, "well, research shows in a majority of the cases
repeat cones show nothing and so therefore that is no longer a standard practice". So in other words, if you don't fit neatly into their "majority" category, you are out of luck.

I am thoroughly disgusted and I don't know what to do. I want to give up and just accept what they say but I know I can't. I need some advice. Should I keep going to drs until I find one that will give me a repeat cone or a hysterectomy (which is what I'm leaning toward at the moment)?
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  #2  
Unread 07-03-2002, 06:52 PM
I would appreciate any advice (long)

HI,
SORRY YOUR HAAVING SUCH A BAD TIME.
THE ONLY THING I WOULD SUGGEST IS CONSULT WITH ANOTHER
ONOC/GYNE!!!
THERE HAS TO BE A DOCTOR THAT COULD GIVE YOU STRAIGHT
ANSWERS TO YOUR QUESTIONS.INDEED FIND A NEW DOC, IF YOUR NOT HAPPY , YOU WON'T TRUST HIM NO MATTER
WHAT HE SAYS. FIND SOMEONE THAT YOUR COMFORTABLE WITH.
WHAT ABOUT GIVING THE CANCER SOCIETY IN YOUR AREA A CALL. PERHAPS THEY COULD RECOMMEND A GOOD ONOC/GYNE FOR YOU.

GOOD LUCK , KEEP US INFORMED.
  #3  
Unread 07-03-2002, 07:06 PM
I would appreciate any advice (long)

Hi, Sorry to hear about your appt. I think I would find a second opinion just for reassurance. My doctor went step by step with me, but my cone biopsy came back with a diagnosis of invasive cervical cancer and the recommendation that I have a radical hysterectomy.

's
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  #4  
Unread 07-04-2002, 04:56 AM
I Suggest Another GYN/ONC Opinion

If you are not satisfied with this doctor now, you won't be trusting of him/her in the future and that is not what you want or need--you need someone you can trust and communicate with. The idea of the Cancer Society for a referral is good; your primary care doctor is good. Are you near/at a major cancer center where you could just ask for another doctor to evaluate things? I hung on too long with a doctor I didn't like and believe me, it was hard and really in the long run a mistake. We just weren't a match for each other and it hurt. I have to advise that other opinion. And express your concerns that you've expressed here so he/she knows what is most bothering you and can specifically address that.
  #5  
Unread 07-04-2002, 07:24 AM
I would appreciate any advice (long)

I know what your going through. I had cryos and LEEPs for 7 years before I finally ended up with a hysterectomy. My last Dr. didn't want to do the surgery so I went for a second opinion at Memorial Sloan-Kettering. My Dr. there said I needed the surgery. And am I ever glad I did it. My pathology showed invasive cervical cancer. Before that I had had various stages of CIN and carcinoma-in-situ twice. So I am a big believer in the second opinion.

A friend of mine who is a Dr. also gave be a book called Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner. It really helped me make decisions on how to procede through the jungle of decisions and information. In the back they recommend cancer centers - listed by state. The ones they recommend in PA are Fox Chase Medical Center and University of Pennsylvania Cancer Center in Philly and Pittsburgh Cancer Center. Don't know if they are anywhere near where you live but . .

Just trust your gut and don't let them push you around! This is your body and your health!

Hope it all work out.
  #6  
Unread 07-04-2002, 07:49 AM
Thank you all - I went to Fox Chase

in PA - believe it or not. One of the pioneers in cancer prevention and he did nothing more for me than my regular GYN. I have a gut feeling that I have an invasive situation and at this point I am desperate for a dr that will do a cone or a hysterectomy. I will go to Sloane kettering if thats what it takes. Would you suggest that?
  #7  
Unread 07-04-2002, 08:08 AM
Sloan-Kettering

I can only speak for myself. But I LOVE Sloan. My Dr. is amazing. Very caring, very thorough. Gives me as much time as I need to ask questions. The nurses are the best I have had ANYWHERE.

I was in the hospital for 2 days following my LAVH and everyone was so nice and took such good care of me.

I feel like I am in good hands and am an active participant in my care (which is important to me).

I would recommed them to anyone.

But that's just my opinion.
  #8  
Unread 07-04-2002, 07:37 PM
Gyn-Oncologist listing

Anyone interested in finding a Gynecologic Oncologist in their area, go to www.sgo.org and you can search for one of these specialists by city or state location. (It is the Society of Gynecologic Oncologists.)
  #9  
Unread 07-05-2002, 12:08 PM
I would appreciate any advice (long)

I believe that I had the same diagnosis as you have. I had glandular involvemtent with unclear margins. The recommendation was a hysterectomy as soon as possible. I am glad that I did it because they found 1mm of stage 1 cancer. You should find another oncologist. It sounds like that it what you think. I know many excellent ones in Manhattan. Dr. Abu Rustim at Memorial Sloan Kettering is very good. Dr. Dotino from Mt. Sinai is my gyn/onc. He is wonderful. If you explain the urgency of your situation one of them will probably take you right away. Where do you live in PA?

-Denise
  #10  
Unread 07-05-2002, 12:19 PM
Hi Denise

Hi Denise-
Thank you for posting! Did you have squamous CIS or adeno CIS? I know with adeno thay usually want the hyst. But if you were dx with squamous CIS, I need the name of your dr I live right outside Philadelphia, in Wayne. After doing even more research, especially after reading survivor stories on the National Cervical Cancer Coalition website (http://www.nccc-online.org/) I am certain that I am not going to sit and wait for another 3 months for just a pap smear. Did you have your hyst yet?
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