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Change of diagnosis


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***Friends, I also posted this on Grace, so apologies in advance.***

Dear Friends,

Three weeks ago, my 59 year old Dad was diagnosed with NSCLC Stage IIIB located in the pleural cavity with no visible metastases acc. to the PET scan. We met with an onco. who was wonderful and he recommended a fairly standard treatment plan. That same day, we met with doctors at one of the NCI centers in our city- Fox Chase Cancer Center. The doctors there were concerned that the pathology had inconsistent markers and demanded a review. We contacted our first onco. again and he told us that it looked like a large cell neuroendocrine tumor stating that... "The tumor does not have the typical markers for non-small cell lung cancer, but is morphologically not consistent with small cell lung cancer. Large cell neuroendocrine tumors may have aberrant expression of various markers, so a tertiary review is certainly reasonable.

The staging of the tumor is based on the CT and PET scan findings. We use a TNM staging system to define the extent of disease. The tumor is invading into the mediastinum (center structure of the chest). This is classified as a T4 tumor. We are giving him the benefit of the doubt that the fluid around his lung is not involved, but that would also be considered T4. There are lymph nodes in the left hilum and mediastinum that are enlarged and abnormal on PET. This would be classified as N2 disease. There was no evidence of distant metastases, which is M0. The final staging is T4 N2 M0, which is stage IIIB."

We have been anxiously awaiting the results of the new pathology run by FCCC and today Dad went in to have fluid around his lung tested (although it was not cancerous acc. to the PET). While there, they drained almost 1 1/2 qts. of fluid, which may have been responsible for his recent breathing difficulties. Finally, this evening, we received a call with the final test results.

It turns out, acc. to the doctors at FCCC and a 15 member consulting panel, that this is not lung cancer at all, but an extremely rare for of cancer called Ewing's Sarcoma and the tumor was classified as a Primitive Neuroectodermal tumor. We were completely blown away and are looking for all possible news on this type of cancer. The incidences are so rare that there is not much available on the computer. Some of the symptoms seem to be consistent with Dad's conditions- swelling in the joints esp. So, I am looking for a few things...

1. Do you know anything about this and the treatments?

2. Should we get another opinion, or is this so rare that it wouldn't be posited if not correct?

3. Should we stay with FCCC or head to Sloan Kettering?

4. Is this something that could be easily confused with lung cancer?

5. Where the heck did all of that fluid come from?

Looking forward to your responses.


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http://sarcomahelp.org/learning_center/ ... rcoma.html

I found these sites that might be helpful. I googled "Ewings Sarcoma Support Group" I think. It looks like this kind of cancer occurs frequently with children and young adults so you may find that a lot of sites are kind of geared toward that, but I would think treatment options and information would still be helpful.

I don't know anything about Ewings Sarcoma, but as for where to get treatment I would say ask lots of questions and go where they have THE MOST experience with this particular disease. Ask the 'How many patients have you seen with this? How did you treat them? How are they doing now?' kinds of questions.

I'm deailng with my own 'out there' diagnosis and I find that I CAN find information, I just have to be persistent and creative with my search terms in search engines. I am also finding that the more I learn, the easier the more technical stuff is to decipher.

Praying for you and your Dad. I know that there is a layer of loneliness that comes with everything else when you find out that you have a rare diagnosis. But I also know there is support out there and you will find it!!!

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Wish I could help. Just want to say I understand. My type of cancer is not rare, just unusual in the sense there is no tumor. It's lonely feeling "odd" in the cancer sense. Good luck to your Dad and hope he finds medical people in whom he feels confident.

Judy in KW

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