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Wrong cancer diagnosis...shock Wrong cancer diagnosis...shock

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Unread 10-26-2003, 02:06 PM
Wrong cancer diagnosis...shock

I wondered about your dx when you said that your cancer was found outside of the uterine cavity.....and that it was endometrial cancer.....
A friend of mine had ovarian cancer, stage 1a, low grade.... She only had the effected ovary removed...they concluded that there was no spread and she had a child a year later and is now pregnant with her second child. She will probably have to have a hyst when she is finished having her children....she is doing great and her prognosis is somewhere in the high 90 for cure with ovary removal alone.
I am sure you will be fine..... I think it is good that you are seeing an onc/gyn....
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Unread 10-27-2003, 07:39 AM
Wrong cancer diagnosis...shock

Thanks karenann and Chris 5.

Karenann i had to give the path report back so i dont know whether it said epithelial before endometrioid im afraid. Yes biopsies were taken of everything that were removed including the peritoneal washings and they were negative. Could you give me the web address for the site that you looked at please? Hope everything is going well for you and you must be very proud of your son.

Chris5 when you say low grade does that mean a '1'?? Its all such a worry and i really felt that i had put it all behind me. Still im trying to look at it and say 'well does it really make any difference.......endometrial/ovarian.......theyre all cancers with the same treatment and the same prognosis' sighhh

take care
Unread 10-27-2003, 10:09 AM
Wrong cancer diagnosis...shock

We are fortunate here in the US to be entitled to copies of our medical records - and I think we take it for granted that others have this same privilege. I am the only one of my family in the US - everyone else is in England - and when my dad had cancer, we were not allowed to see any of his reports, much less make copies of them.
Hang in there Sheila. I am glad you are now under an ONC - I did the same thing based on what the ladies here said - and while the info he gave me was much the same as my GYN, I still have a greater comfort level.
Keep asking questions, be persistent.
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Unread 10-27-2003, 10:26 AM
Wrong cancer diagnosis...shock

Sheila, I totally understand how frustrated and confusing this diagnosis is.
I was diagnosed with endometrioid adenocarcinoma of the ovary. I was very confused when I got the diagnosis as I thought it was endometrial cancer. I did get this cleared up by my gyn/onc. It's too bad you had to wait so long.
My gynecological oncologist explained it as endometrial tissue that formed on my ovary and became cancerous. (maybe not even in that order). A cyst formed around it. It could have been any kind of tissue due to the genetic potential of the ovary.
Mine was a stage IC grade I. It was in a cyst, but the cyst opened during the removal. (Of course, it was not thought to be a cancerous cyst until she found the surprise inside).
Best wishes to you and your treatment plan!
Unread 10-27-2003, 03:59 PM
Wrong cancer diagnosis...shock

Hi Sheila

Here is the Johns Hopkins web site.


It is packed with information about ovarian cancer. But while reading, always remind yourself that you had the earliest of the early for your stage and grade.

oxoxox karenann
Unread 10-27-2003, 05:28 PM
Wrong cancer diagnosis...shock

You should ask for a copy of your path report to be sent to you from your doctor. They should provide you with a copy for your records. I had my hyster 8/12/03 for endo and they found low grade ovarian cancer with low malignant potential (atypical serous tumor) and they always had (borderline) following the name of the tumor.

I have gone to 2 GYN/Onc's now and will stay with the 2nd one, a woman. She was much more direct and open about the whole thing. Her opion on the low grade/low malignant potential tumors is they are a pain in the butt becase you have to see the GYN and have blood work (CA125) twice a year for life. She said the CA125 will show the ovarian cancer 6 weeks to 6 months before a CT Scan will. You also have to watch the symptoms and go see the oncogolist if any of the symptoms persist.

A cancer web site you can go to is: http://www.wcn.org/index.cfm
It is the Womens Cancer Network and is put on by GYN/Onc's etc. My doctor gave me a card with the web site on it so I could go and research on that web site. It is specifically for GYN cancers.

Good luck with finding out exactly what type of cancer you have. I noticed a comment about getting off "that patch". My GYN/Onc said that there isn't a problem with taking esterogen for me. She wants to see my dosage cut in half by 1 year post op and should be off by 5 years.

Hope this helps.

Unread 10-27-2003, 06:41 PM
Wrong cancer diagnosis...shock

A loud and squeaky patient is a healthy patient. I ask for and demand information all the time. And everyone just kind of lets me. They know that there are different types of patients. You should be able to get your path reports, even if you have to go through a medical records request process. I believe it is illegal to not provide records, even overseas. You can easily demand waht you want -- especially since your gyn gave you the wrong info, and you could make a big stink about that if you want.

I defer to the others here as to whether or not you need additional treatment for such early stage cancer. A 10% recurrence rate is very low. Many of us are dealing with a recurrence possibility of more like 75%, so you are doing great!

Please don't worry too much. Read as much as you can, and challenge your doctors. Do not be afraid of them. They only know what they were taught in their training. But medical training -- in any country -- only covers one part of the picture. You must be your own advocate, and you must educate yourself.

I'm so sorry for the shock you must've felt when you were given a different diagnosis. You shouldn've have had to go through that.

Sending you s!

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