I’m hoping someone could offer some insight or even their own thoughts into my dad’s latest dilemma as I think it’s possibly a rare situation. You all have been so helpful in previous posts, thank you so much! I couldn’t do this alongside my dad without this forum. I can’t find much info on my question in my research. My dad is 64, stage IV NSCLC adeno, low volume tumors, dx 2/28/18, started clinical trial of Carbo/alimta/Pirfenidone pills 3/30/18 for 4 cycles, 2 Alimta maintenance so far and 3rd next Friday with scans. He has 4 areas of cancer right now. One tumor in his right lung pressing some on the bronchus, right atrium of the heart causing mild SVC syndrome. Recently developed a 5” blood clot outside the heart and is on lovenox and it is working fairly well so far for the clot. He has a very small portion of his right 4th rib showing cancer on PET scan but it’s minor and small tumor in each adrenal. Chemo has not shrunk his cancer but HAS kept him stable since day 1 so far
My dad’s oncologist isn’t big on radiation or sees a need in it. At my encouragement, I had dad see a radiation oncologist independent of Moffitt, locally here. This radiation oncologist is fantastic and my dad has come to trust him. The radiation oncologist has reached out to his oncologist to discuss my dad’s case but his oncologist will not return his call, stating he does not need to talk to the radiation oncologist. This is leaving my dad to make the decision himself. So here’s the dilemma -
The radiation oncologist has said he doesn’t feel my dad absolutely needs radiation right now for he SVC syndrome, however if he does radiation he would like to radiate ALL tumor sites on my dad. This would be IMRT to the one tumor in his lung between heart and bronchus, and SBRT to the small area right 4th rib, and SBRT to both small adrenal tumors. I realize this is rare (at least I can’t find much on it) to have a radiation oncologist willing to hit all known tumor sites for stage IV. He did say it’s a gamble, one that could work in my dad’s favor or not. There’s also the risk of radiation side effects which he believes esophagitis and possible scarring is the most extreme possibilities. This would take my dad out of the clinical trial - essentially he would stay on Alimta maintenance but have to stop the Pirfenidone pills, which we don’t know if that’s helping as his cancer is just holding stable and Alimta is good for doing that anyways. It would also eliminate any future biopsy sites for mutation tests in future as his left adrenal is the target lesion. We are getting no help from his oncologist except to say radiation will not extend anyone’s life. I disagree with that as I have seen it many times on here where radiation has helped stage IV. My dad is torn and I’m trying to help give him enough information so he can decide what he should do. Stay on chemo and stable or stay on chemo and radiate all 4 tumor sites and gamble that it just may work in his favor for NED in the long run and come off Pirfenidone in clinical trial. Any help would be most appreciated!!!