Roseymac Posted February 10, 2004 Share Posted February 10, 2004 My Husband had an appointment today to start the PCI treatments, we met with the Radiation Onc first and she seemed quite surprised that our Med Onc had sent us because my husband has extensive small cell and she said they usually only do it for limited. He had sat down with us and explained how important it was and to think of the alternative if he did not. The Radiation Onc did almost all she could to talk him out of it because her feeling is radiation is unforgiving and doing the PCI now will not guarantee he will not get brain mets. But because it is small cell there is a 1 in 2 chance it will. She said if she does it now and he developes it later it will be twice as hard to treat. But my husband still said okay and signed the papers and went off to make the mask. About 15 minutes later she came out and brought me in and said she had called the Med onc and he had forgot he had extensive (we have had this Dr. for 6 months) so no PCI for him now, maybe sometime in may. Unbeleivable he really debated about this for the last 3 weeks and after reading many of the post here decided it was the best thing to do. We were called by Sloan Kettering in NY to participate in a clinical trial and gave that up because of this. Just don't know what to make of all of this. Has anyone ever heard this all before? Rosemary Quote Link to comment Share on other sites More sharing options...
berisa Posted February 11, 2004 Share Posted February 11, 2004 Hi my dad is one of the rare case that who is limited stage and still had brain mets after PCI. He is lucky to have the craniotomy done but normally, the whole brain radiation is followed. But because my dad had PCI previously that now he cannot do the whole brain radiation. So his brain will be monitored regularly. So, I suggest you to talk and think seriously before PCI. My dad had no brain mets right before PCI treatment. I do not mean to stop your husband from doing PCI. But you have to think about the pros and cons. Quote Link to comment Share on other sites More sharing options...
Elaine Posted February 11, 2004 Share Posted February 11, 2004 According to what Berrissa says and what the Rad onc said, it is probably wise to wait for the PCI. The problem here, however, is the other Doctor. maybe someone should "forget" to pay him or her since he or she just wasted your time and your thoughts and decision making energy. I hope you let him know what you think about what happened and how much it may have cost you. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted February 11, 2004 Share Posted February 11, 2004 Rosemary, the Onc forgot?!?!?!?!?!?!?!?!? I think I would forget this Onc and go get another one. That was unacceptable. My thoughts and prayers are with you. David C Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted February 12, 2004 Share Posted February 12, 2004 I also have extensive and discussed the PCI with the oncologist. After studying some about it I opted not to have it done either. If I end up with mets to the brain then I will of course go ahead. For right now, I am doing well. Quote Link to comment Share on other sites More sharing options...
paddy Posted February 12, 2004 Share Posted February 12, 2004 I agree with the other's Rosemary, there is no room for "forgetting" with this disease! Get a New One, Good Luck to you, Paddy Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 12, 2004 Share Posted February 12, 2004 In researching some of the SCLC literature, I came to the conclusion that PCI was not only done to cure, but to improve the quality of the life remaining. The argument was that mets to the brain caused so much debility that they should be inhibited even if mets in other parts of the body were progressing. The papers I recall suggested that PCI was not all that effective, cutting brain mets from 59 % to 33% at THREE YEARS. That’s the kicker, if you survive a long time, you are more likely to have brain mets. A Jan. 22, 03 review paper in the New England J. of Med. said PCI increased the number two year survivors of limited SCLC in remission by 5.4% . It states that PCI is usually recommended “ mainly because of its potential to increase the quality of life as well as a small survival benefit.” My radiation onc has apparently not heard of this concept of PCI as a palliative treatment from what he tells me. I am not too surprised that your Doc can’t remember what you have. They need not be good, because they have no real competition and there are way too many sick people, and by design, too few MDs Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 12, 2004 Share Posted February 12, 2004 That NEJ Med Review 2004;350, Multidicilpnary Managment of Lung Cancer was published this Jan. not last Jan Quote Link to comment Share on other sites More sharing options...
Roseymac Posted February 12, 2004 Author Share Posted February 12, 2004 I totally agree about the onc, we have had a problem with him from day one.(With Diagnosis) We were told by him they were not able get the biopsy from the bronc,so he would have to have a surgary biospy the next day well that night the Radiation Onc shows up to take him for radiation, here they had gotten it the first time after all. I'm telling her we don't even know he has cancer yet. poor thing, she had to go and get the lab report to show me. Our pulomary Dr. set us up with the chief onc at the hospital, well as luck would have it he retired that week and this is the new chief, and if it wasn't for his chemo nurses there we would be gone. He even looked forward to going to Chemo because of them. They are the best they treat my husband just like a member of thier family, anything and I mean anything we need we get immediately and have learned more from them than the Doc, thankfully we only see him once a month, and now he's done with chemo maybe less. When he was first told they weren't going to do the PCI I kinda felt slighted, as if they were saying why waste the time on extensive, we thought this was a good thing we were moving on up. But now I realize it is for the better to wait, like Fred says why fix it if it isn't broke. He has another CT scan on Monday hopefully it will be as good or better than the last. Rosemary Quote Link to comment Share on other sites More sharing options...
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