SDianneB Posted November 3, 2004 Share Posted November 3, 2004 As I thought, the wonderful Pulmonologist I see just cut through it all and made some sense - finally! Bottom line? I have something -- he thinks scarring -- at the site of the original tumor. That's what's getting everyone so antsy, and why they seem to want more and more PET scans. I told him my fear - that a PET scan would just light up everything, and then they'd want more invasive tests to rule it all out. He totally understood that, so we returned to the discussion of having a PET scan after chest radiation. I'd asked him about seeing a lung cancer specialist for a 2nd opinion, and he says it's always a good idea to get a 2nd opinion, but recommended I do something first. He says that since the Rad. Onc. are the ones who told me a PET scan would be "useless" within 4-5 months of having chest radiation, I should go back to him and talk about this more. It that's true, then the Rad. Onc. needs to call and explain this to the Oncologist. If not, then we just need to get it resolved. I told him that the Onc. gave me the impression that she wants to be the one to intervene with the Rad. Onc., and he said he thought I'd feel better about it if I get the info first hand, and if they are telling me things that don't mesh, then they need to get it together. After that, he says if I'm not satisfied, I should go for the 2nd opinion, and he (Pulmonologist) will do all he can to help. He wants to see me in January after I've had a CT/PET scan then. What happens before then with the possible PCI is between the Oncologist & Rad. Onc. As always, he makes much sense. The one thing I wasn't doing here was going back to the Rad. Onc. to straighten out what I'd been told previously. If everyone gets their knickers all twisted because I do that, so be it. That will be a major clue that I need to go elsewhere. So, as for now ... The Pulmonologist says that he thinks what they are seeing on the CT is scarring. Why? Because since I started treatment, he's seen no test in which conditions did anything but improve - drastically. He said that if the treatment had been a failure, we'd have seen it long ago, so given that SCLC is very susceptible to chemo/radiation, he says it's quite valid to believe that what we are seeing is scarring and not active cancer. Also, I feel good and have felt good for a while now. He says that if there was tumor there, it would probably be doing to me what it was doing before, and it isn't. He said that he couldn't tell me for sure that there was "no cancer" there, but not to run out and tell everyone I still had cancer, because he couldn't say that for sure either. I think he'd like to see a PET scan too, but only if the Rad. Onc. believes that it will do some good, and he will make sure they don't try to run me through the wringer on more invasive (and useless) tests. I can't officially invoke the spirit of NED, but I have every reason to believe that things are looking good. I will make the Rad. Onc. appointment ASAP and see where we go from there. I sure feel better now that I've seen the really good doc!!! Thanks to you all for the good thoughts and prayers - they really help! Di Quote Link to comment Share on other sites More sharing options...
Addie Posted November 3, 2004 Share Posted November 3, 2004 If everyone gets their knickers all twisted because I do that, so be it. That will be a major clue that I need to go elsewhere. Absolutely!! Let 'em get their knickers in a knot! Who cares? This is YOUR LIFE we're talking about here...so I'm not too concerned about some onc's twisted knickers....ya know? Thank goodness for your pulmonary doc. He's a voice of reason. And listen to your body, Dianne. I too, felt good towards the end of my chemo. All they found with my scan was some linear and lingular scarring. But I've read often here, of others who had "something" there, that over time continued to shrink...and it was determined to be scar tissue! It's not always easy to tell....right after chemo and radiation. I'm glad you are going back to your rad. onc. I know you trusted him too...so follow through and then report back to us! Again, this is your health...and you have every right to question what is being done and change docs if you're not satisfied! Go get 'em, girl! Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 4, 2004 Share Posted November 4, 2004 ditto, my thoughts exactly. Cindi o'h ps..NED will come...just give him time to rare his pretty little head Quote Link to comment Share on other sites More sharing options...
Melinda Posted November 4, 2004 Share Posted November 4, 2004 As I thought, the wonderful Pulmonologist I see just cut through it all and made some sense - finally!Bottom line? I have something -- he thinks scarring -- at the site of the original tumor. I can't officially invoke the spirit of NED, but I have every reason to believe that things are looking good. I will make the Rad. Onc. appointment ASAP and see where we go from there. I sure feel better now that I've seen the really good doc!!! Di, Happy to read your post and praying for scarring!!! :) So glad you are feeling better, as well. That makes such a difference. All the best, Melinda (and Geoff) Quote Link to comment Share on other sites More sharing options...
Kaffie Posted November 4, 2004 Share Posted November 4, 2004 Listen to your body and the doctor you liked and trust. That seems to be what puts a smile on your face and that's just what you need. Kathy Quote Link to comment Share on other sites More sharing options...
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