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You are NOT going to believe this/possible Cancer misdiagnos


Guest Mrsmanny

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Guest Mrsmanny

I have looked into that but not asked directly.

Aspergillis does come up on PET's and does have caseating granulomas.

They did test for fungi and said "negative"

But I'll explore that further!

Thanks!

Oh, and melanie, thank you!

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Thinking back to my time of diagnosis and the uncertainty of it all, I was told by the surgeon that the only way to make a definitive diagnosis is with a tissue sample.

PET scans light up for three reasons--infection, inflamation, malignancy. There is no way to tell which one of the three causes a positive reaction other than getting tissue.

My surgeon would not do a biopsy. He said that the nodule had to come out of there, and a biopsy has too many undesireable side effects. Also, if the biopsy said negative, they would really consider it inconclusive because there is always a question that they did not reach any cancerous tissue when they took the sample. So, if the only biopsy result they trust is a positive for cancer, then why not take the thing out of there and not mess around with the potential of bleeding, collapsed lung, chest tubes, etc. for a biopsy?

Somehow you need to get a diagnosis, and if it is cancerous, get it out of there if surgery is appropriate. It's a tough surgery, but I was so happy to know that that thing was out of there once it was over.

Please get to the bottom of this and keep us informed.

Good luck,

Cindy

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Ditto for me. Although my doc's were sure my mass was cancer, the only way to confirm was by tissue sample. My surgeon also said that the mass had to come out either way. I wanted it out too.

Make them get on the ball and find out what it is.

In the meantime you have my prayers.

God Bless you both,

Barb

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Wow you certainly have been on a roller coaster ride. You first posted on the 4th, last you posted today. They aught to get on the ball and find out what this is. Your poor guys, this is crazy, Why don't they just take an biospy to find out if it is malignant of not.

I have a feeling this is all going to come out fine. Just have faith and believe it will.

Good luck, keep us posted.

Maryanne

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First, I am sorry you have had to go through all of this. It's mind boggling and I am sure that it is hard on you both,

I dont really understand though how they can be sure it's not TB or fungus if they haven't done a tissue biopsy. What are they basing that on?

I hope you get some answers sooner rather than later.

love and fortitude

elaine

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I am so sorry you have to go through this uncertainty. My father had the same thing. No definitive biopsy on the spot. We even considered a specific type of ultrasound biopsy of the lung that is only done it certain hospitals but my father finally decided to go with the doctors almost certainty that it was cancer and have six weeks of radiation and chemo. It is agonizing to go through that for something that may or not be cancer but so far our experience has been that if they are almost certain, they are the experts, therefore lets be proactive. My father's decision was that he would rather fight it while he was healthier and he didn't want to second guess not getting treatment. I just hope it helps to know that you are not alone and we understand how extremely frustrating this is. Hang tough!

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Guest Mrsmanny
First, I am sorry you have had to go through all of this. It's mind boggling and I am sure that it is hard on you both,

I dont really understand though how they can be sure it's not TB or fungus if they haven't done a tissue biopsy. What are they basing that on?

I hope you get some answers sooner rather than later.

love and fortitude

elaine

They've ruled out TB and Fungal infection on the Biopsy of the Lymph nodes (in the neck area)...no one has taken a sample from his lung.

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