Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

PET Scans

rcscott65
0 Recommendations

Can a PET scan show that you have lung cancer when it is actually a VHL lesion? Is this possible?

Explore topics in this discussion:

Cancer Surgery Lung cancer

6 replies

TinaDiane

Thank you so much Joyce. I appreciate you and all of your support and hard work. You have made a huge difference in my life as well as everyone else in the VHL community.
Tina

joyceg98

The pulmonologist at NCI who operated on a couple of people with VHL is evidently preparing a paper. I'll send you his name to your personal account so your doctor could contact him.

And to everyone out there with VHL spots in the lung -- please share information! If you don't want to post publicly, please send it to me privately at director@vhl.org. We all need to learn more about these things.

And if anyone has something removed and can donate some tissue to the tissue bank, that would be FABULOUS! Eventually we will learn. Please see http://vhl.org/bank for details about donating tissue.

Best wishes,
Joyce

TinaDiane

I just had a second opinion visit with a new pulmonologist. He is bright, intelligent, honest and caring!! (Thank you God). He also does not know anything about VHL but is going to research VHL and lung problems. If you remember, I have many spots on my lungs that they originally found on an abdominal CT so I had a chest CT done Jan 08 and then fall 08. The spots look like hemangiomas to the radiologist, but I live outside of Bend OR and no one knows to much about VHL here. My new pulmonologist said they could be hemangiomas, lung cancer or pockets of infection (BOOP) but I have no symptoms of the last 2. Our concern is that the "spots" have grown 20-30% in the last 8 months and they are spread through out both of my lungs.
He is doing a full (non invasive) lung workup on me and will see me again in 2 weeks. I will end up at a VHL center I'm sure. Does anyone know of a VHL Center that has a Pulmonologist on board?? Joyce??
Best of health to you all.
Tina

joyceg98

There is very little information about these things. If you learn anything you can share with the group, please do. I'm working on it on this end too -- I'd love to have a newsletter article that would help people in this situation figure out what it is -- preferably without surgery.

There is a benign angioma that can occur in the lungs in VHL. AND we are also members of the general population, so as your doctor says, it could be anything. So how can we tell??

Best wishes,
Joyce

TinaDiane

I have several spots on my lungs that the radiologist did not know what they are/were. I have gone to one pulmonologist (who was not very bright) and she said they could be ANYTHING. I am going to another pulmonologist on Friday the 16th for a 2nd opinion. I have also been worried about what they could be because the radiologist said the opacities were 20-30% larger than 8 months ago. Joyce found a study that showed we can get hemangiomas in our lungs and the VHL hand book states that also.
Good Luck to you,
Tina

joyceg98

Good question. I don't know. I'll pass it to a radiologist.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You