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

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Unread 10-26-2003, 03:15 AM
Wrong cancer diagnosis...shock

Well just when i was so pleased with how everything was going.
My cancerhead had improved, my sex life is back, doing well on the hormones, feel good etc etc etc. Then i went to meet my gyn/oncologist for the first time. ( I have been under my gyne with the gyn/onc there for opinions etc). My questions were aimed specifically at my follow up appointments where i wanted to be seen by the gyn/onc. I had learnt a lot from this site (for that i thank my hystersisters x) and i knew the follow up procedures that i should have and how often i should have them.
We started to talk and i said that i had read up an awful lot about endometrial cancer and i feel confident. He looked up at me and said....'did you say endometrial cancer??' I replied 'yes, endometrial cancer non agressive'. He looked at me over his glasses and said 'you have been operated on for ovarian cancer, where did you get the idea that you had endmetrial cancer??' I replied thats what i was told repeatedly and i even got my gyne to write it down so when i got home i didnt make any mistakes when telling my family. At that point he came round to where i was sitting and said..im sorry but you have had ovarian cancer. SO AFTER THE SHOCK and lengthy discussions i want to ask all my cancer concern sisters to tell me if logically does this make a difference???? He told me that it is the same percentage 10% possibility of recurrence over a 3 yr period as endo cancer BUT I AM COMPLETELY MESSED UP. Can someone out there tell me is there a difference in treatment as i cant trust anybody over here.
My grade and stage is 1a 1. So again i have been told i dont need any treatment just follow ups. Anyone out there with ovarian cancer with my stage and grade that can tell me whether they had any treatment????? Oh yes and he wants me off the patch. Vaginally twice a week is ok. Waiting to hear from you all.
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Unread 10-26-2003, 06:43 AM
Wrong cancer diagnosis...shock

That must have been a shock. So they removed your uterus as well and that was fine, but you had early stage ovarian cancer? At least they got it really early and your prognosis is excellent. I am glad you are being followed by a gyn/oncologist. There have been women with early stage ovarian cancer. I am sure that they will be along to share their experience. I do know one woman who had stage 1A ovarian. I don't think that she had any further treatment and she is fine. She had it about 15 years ago.
Unread 10-26-2003, 08:09 AM
Pathology and Surgery Reports

This is one of the reasons I always advise women to obtain a copy of their pathology reports, which include information on the type of cancer as well as the stage and grade of the tumor. It is difficult to make informed decisions about treatment and follow up if you are not provided with basic information on the type and extent of the cancer with which you're dealing.

I would suggest, if you haven't already done so, that you obtain a copy of your pathology and surgery reports (two different documents) so that you have information on all of the details of your case.

It sounds like you were extremely fortunate that your cancer, whatever type it is, was caught very early.

Best of health to you!

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Unread 10-26-2003, 10:14 AM
Wrong cancer diagnosis...shock

Thanks for replying Andydenise and Moekay.

Andydenise, .. yes they removed my uterus and it was clear.

Moekay.....I did have my path report. It didnt name the cancer just the type i had. Well differentiated endometrium adencarcinoma and from that my gyne said i had endometrial cancer. I do realise how lucky i am for it being found as the oncologist told me this isnt usually discovered until it is a much higher stage and grade. For that i must be grateful. Im just worried about follow ups and whether i should be having treatment.
Unread 10-26-2003, 10:37 AM
Is Gyn-Onc Saying Pathologist Was Wrong?

If your pathology report states that the pathologist concluded you had endometrial adenocarcinoma, did your gyn-onc say why he believes you had ovarian cancer? Did he think the pathologist's diagnosis was wrong and have another pathologist review all the surgical specimens and find something different than the first pathologist who concluded that you had endometrial cancer?

The conflicting information you have doesn't compute, and if I were you, I would wand to find out from the gyn-onc what the basis for his diagnosis of ovarian cancer is when the pathology report states something entirely different.

Unread 10-26-2003, 11:10 AM
Wrong cancer diagnosis...shock

Thanks very much for replying Moekay.

I think i might have got the spelling wrong. It states..tumour within left ovary a well differentiated (grade1) endometrioid adenocarcinoma. My onc said that this means 'cancerous tumour of the ovary'. Does that make a difference to your way of thinking??

Unread 10-26-2003, 11:22 AM
Now That Makes Sense!

Yes! The language you provided above from your pathology report is consistent with ovarian cancer, not endometrial cancer. Endometrioid adenocarcinoma of the ovary is definitely different than endometrial (or endometrium) adenocarcinoma.

So we solved the mystery at last!

Unread 10-26-2003, 11:32 AM
Wrong cancer diagnosis...shock

s Sheila

Endometrioid in a sub type of epithelial ovarian cancer.
Thankfully your cancer was caught very early.
Was your surgery performed by your gyn/ob doctor?
Did he sample any lymph nodes?
Please make sure that your followups continue with the gyn/onc doc and not your old gyn/ob. And I agree, get off that patch.

Unread 10-26-2003, 01:17 PM
Wrong cancer diagnosis...shock

Thanks Moekay! but the mystery isnt solved because i was told i had endometrial cancer by my gyn and i have it in writing. So why i was told i had endometrial cancer arrrrrrrrrrrrgggggggggggggghhhhhhhhhhhhhhhhhhhhhhhhhhhhh.

Thanks Karenann for replying. My surgery was performed by my gyn. Lymph nodes were sampled. My follow ups are going to be with my gyn/onc but at the time in hospital i didnt even know there were such people. It wasnt until i came to hystersisters that i truly learnt a lot and i am grateful to all of you. Is it right that i am having no treatment?? I know it is for endometrial cancer. xx

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

I believe your gyn told you the wrong diagnosis because he himself confused the two words.
They are similar. endometrial and endometrioid. But the word epithelial should have preceded the word endometrioid. It would be interesting for you to read the original pathology report.
Just goes to prove that gyn/obs are not the experts with gyn cancer surgery.
Some early stages of ovarian cancer are treated with three cycles of taxol and carboplatin. But your stage is the earliest of the early. I am assuming that more biopsies were taken along with the lymph node and all were negative?
But even now, if a doubt exists, get a second opinion from another gyn/onc doctor. I did just check the Johns Hopkins web site, and with a low grade tumor, they suggest no further treatment.
Best wishes.

oxoxxo karenann

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