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My final diagnosis 1 yr later is stage 1a grade 1 My final diagnosis 1 yr later is stage 1a grade 1

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Unread 01-21-2004, 10:46 AM
My final diagnosis 1 yr later is stage 1a grade 1

Today i received the news that my PET/CAT Scan was a NED! i not only know what NED now means but i have an excuse to do the dance!!! !! This has been a total hell for me...knowing that my lymph glands should have been analysed and know that this wasnt done. I have had a very long letter from my gyn/ob trying to make me understand why she chose...... 1. not to do it and..... 2. chose not to tell me. I need to think how to proceed on this point. For the moment i have decided to channel my energies in hopefully making sure this doesnt happen to anyone else and with the help of a Professor of Ovarian Cancer i will be writing to all the private health insurances saying that they should make sure that all gyn cancer patients are referred to a gyn/onc other wise no payment made. If any of you, especially in the have any advice,on this point, that they can give me i would be grateful.

take care

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Unread 01-21-2004, 12:18 PM
My final diagnosis 1 yr later is stage 1a grade 1

s Sheila

I am pleased that everything has worked out so well for you.
Congrats!!! Enjoy that dance forever with NED.
I admire your desire to educate other docs.
Even though you live in the UK, I have enclosed a link to help you. It is from Johns Hopkins, and I believe they are well known worldwide.

Click on the area titled:
Two biggest choices to make when facing surgery for possible ovarian cancer.

Unread 01-21-2004, 01:07 PM
My final diagnosis 1 yr later is stage 1a grade 1

Awesome news!!! I am so happy for you!!
I assume that your surgeon was a gyn/oncologist. And she never said anything about lymph glands? So you have no clue why they weren't sampled? Perhaps she felt it was not needed because your cancer was small and low grade? What did she say about it at your follow up?

I love it that you are going to help other women by making sure they are informed! Yudos to you dear! It's a wonderful thing to do.

I didn't know that you had private insurance in the UK. I thought the government provided all of your medical care. Why do people us private insurance if the government provides free care? Just curious.

Thanks and many hugs,
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Unread 01-21-2004, 02:11 PM

Thanks so much for your link Karenann. I shall look it up tomorrow. Hope you are continuing to do well. How is your son Jeff getting on??

Denton56. No my surgeon was a gyn/ob. She told me she was going to sample 8 lymph nodes but, it appears, when she got in there my kidney ureter was in the way so she didnt do it and more importantly she never told me she didnt do it. My gyn/onc has told me that he would have known about the ureter problem beforehand and he would have gone ahead. At my follow up appointments she always evaded my question about lymph nodes and therefore made me very suspicious. In the UK we can pay for private health care which basically means you get to see the consultant very quickly and will be operated on pretty much within 2 weeks of seeing your consultant. On the National Health Service you can wait many months for an initial consultation. Although i have to say for cancer there are new guidelines that means you have to been seen quickly.

Take care

Unread 01-21-2004, 02:21 PM
My final diagnosis 1 yr later is stage 1a grade 1

Thanks for the explanation. I didn't realize that there were two systems in the UK. Are the new guidelines working there? Did the government hire more doctors so that women can be seen more quickly? I hope so.

What happened to you is amazing! I can't believe that she lied to you like this! I guess is the lesson here is that if cancer is even suspected we should have a gyn/onc do the surgery. I was fortunate in that my ob/gyn sends any patient, with ANY chance of cancer, to an oncologist. I wish all doctors did that. Then what happened to you would not happen to anyone else.

love and hugs,
Unread 01-21-2004, 03:04 PM
My final diagnosis 1 yr later is stage 1a grade 1

Congratulations!! May NED last forever.

Ruth S
Unread 01-21-2004, 03:08 PM
Sheila, You Have Inspired Me!

I did not get a gyn/omc to do my ovarian cancer surgery. Here I am in a city with a National Cancer Institute hospital which is he** to even reach much less to park at and get around in. The gynecologist to whom I was referred NEVER EVER used the words gyn/onc and I NEVER EVER had heard of such a doctor. My whole pre-op conference with him was that the ultrasound showed masses that were solid and fluid and I needed the hysterectomy and his nurse would call later that day with a surgery date. Well, I have no family, live alone, had work to think about, was told he was "excellent" and even after the CA125 came back at 161 no one told me AND the CT scan showed mets no one said--no one mentioned cancer (the Dr. said at my age shouldn't be--he** I was prime age--57)--so no gyn/onc. AND...get this--the doctor I went to is affiliated with those at the NCI hospital here--they are ALL part of ONE medical group--practice at other locations. He KNEW I had gyn/onc referral. Well, if you can write to the health plan and about referrals to gyn/oncs--by gosh, SO CAN I. It has been in the back of my mind for some time--I am going to do it! His reply to me when I questioned him was "I would'nt do it if I didn't think I were as good as a gyn/onc." But HE IS NOT ONE! The letter will be in the works for a while but it WILL be done to this whole medical group--thanks to you!
Unread 01-21-2004, 03:34 PM
My final diagnosis 1 yr later is stage 1a grade 1

Sheila, great news re the ned call!
I would be very upset too if my gyn lied or was evasive about whether lymph nodes were sampled. Fyi, sometime even when cancer is found the nodes are not sampled. There is controversy whether to do this or not and according to my oncologist it most often is/has to be done; he indicated that it depends upon many medical factors including the location of the cancer, the size, the specific type of cells found, etc.
I wish you luck in bringing your situation to the attention of appropriate doctors and/or women in your country. It is bad enough to learn one has cancer; however, to find out that perhaps not all measures were taken to correctly stage and or control the disease is inexcusable.
Blessings, peggiesue
Unread 01-21-2004, 03:58 PM

I am SO sorry this happened to you!! I must admit that my ob/gyn not insisted that I see a gyn/oncologist I would not have known such doctors existed nor would I have known that I needed to see one!

What arrogance your doctor showed! What a fool to think that he was a cancer expert! This kind of thing just infuriates me! The nerve of him to risk YOUR life so that he could pretend to know more than he really knew. Some expert! If he isn't an oncologist then he isn't 'just as good' as an oncologist! He doesn't have the training OR experience that an oncologist has! Duh. Sorry, it just makes me so angry when arrogant doctors have to pretend they are experts on all things medical simply to support their overinflated egos.

I am sorry this happened to you, it shouldn't have. You have right and reason to be angry about it. It is wonderful that you will try to help another woman who might be in this unfortunate circumstance.

Hang in there and keep us posted on your treament.

Much love and support,
Unread 01-21-2004, 04:15 PM
My final diagnosis 1 yr later is stage 1a grade 1

Sheila, I'm so sorry you had gone through this mess. It's hard enough having to go through a cancer diagnosis. You should not have had to deal with this puzzle regarding your diagnosis.

Congratualations on your dance with NED!!

Glad to hear about your educating folks about the importance of a gyn oncologist for oncology matters!!

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