Any info on Pulmonary Blastoma?

hi @mef - I'm sorry that you and your partner are have received this news. especially for rare cancers, your best option for treatment will always be a top NIH designated comprehensive cancer center. and if there's one that has an oncologist with experience treating this specific type of lung cancer, even better. I read that pulmonary blastoma is agressive, so I would reach out to be seen as soon as possible.

@mef , I’m sorry to hear that you and your partner are facing this, especially after your own experience with lung cancer.

Here is the link to start the Mayo Clinic appointment request.
http://mayocl.in/1mtmR63
Knowing the treatment options can certainly make the decision process easier. Is he open to treatment? Has he met with an oncologist yet?

His cancer sounds different, but may be similar to the type of lung cancer that @gprior husband is facing.
https://connect.mayoclinic.org/discussion/anyone-have-knowledge-of-rare-cancer-fetal-adenocarcinoma/

@lls8000 hi thank you for responding. Yes he’s been to an oncologist who said their team meets once a month to recite cases & make a plan. They meet Feb 29. Too far out but gives him time to get into Mayo for appointment. He meets with his pulmonologist Feb 3 which is going to tell him the same thing. My partner said he will decide after Feb 3 whether he will make appointment at Mayo. I do believe his best chance at survival is at Mayo.

@mamajite thank you for your reply. Yes it is an aggressive Cancer & my partner says he wants to think about going to Mayo. I told him not to take too long.

@mef I would call and ask the Mayo team how quickly he can be seen and see if they can go ahead and request his records to get the ball rolling. he's lucky to have your support! when I was unsure if I wanted to proceed with a biopsy, my pulmonologist convinced me by saying it will help the doctors figure out my best options, without pressuring me to choose anything. maybe a similar (finding out what the best options are) framing will help your partner, too.

This was new to me so I had to do a bit of reading. I would be very interested in learning the results of your genomics testing. Please know that when I was diagnosed fifteen years ago I had less than a 1% chance of surviving 5 years. Everyone responds to treatment differently and I hope your friend has an exceptional response to treatment.

@denzie the doctor decided to do surgery asap. My partner refuses to go to Mayo so his surgery will be with existing doctor. He is stage 2 so they will be removing some lymph nodes and probably chemo or radiation post op. So you had Pulmonary Blastomo? How did they treat you? Thank you so much for responding. I want to know what we both are in for.

@mef , I'm hoping that he's doing well, and that you are there to help him. How soon are they getting him in for surgery?

@lls8000 the 16th or 23rd February

@mef no. It was new to me so I went to the NIH website to learn about it.