mjb Posted May 7, 2004 Share Posted May 7, 2004 Hi folks. I've read a lot of different postings regarding radiation (including the poll above) but it gets difficult to find them and check each person's history. Here's our quandary. My husband has responded exceedlingly well to chemo. After 4 rounds of chemo, a petscan shows "minimal residual hypertmetabolism that probably reflects treated disease". OK, that's good news. Now there is disagreement among the doctors whether he should be treated with PCI and we are meeting Monday with our 2nd radiation specialist to discuss. The first didn't think, statistically, that it made sense to treat him with PCI since he had extensive stage when diagnosed. Our oncologist "respectfully disagrees" because he has responded so well so quickly and he doesn't want to see it come back in the brain. Two questions. 1) Any one who was first diagnosed extensive SCLC and had the PCI? IF so, what side effects and would you do it again if you had to do over? 2) Does anyone know where to find most recent studies regarding this? Ones I have found are a bit older and they say there's no advnatage to doing it if initial diagnosis was extensive. OK, that's actually 3 or 4 questions but it's been a long week. Any input appreciated and best to everyone on this board. MJB Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted May 7, 2004 Share Posted May 7, 2004 I had PCI but was first dx'd with limited stage. However, almost as soon as I was done with PCI, I ended up with Mets to the liver and lymph nodes. Would I do it again? If I thought it would give me more time to be with my family I certainly would. Side effects were mainly fatigue and short term memory loss, both have gone away since PCI was completed. Each person has to decide for themselves what they want to do. Prayers of strength and healing being sent your way! God Bless, MO Quote Link to comment Share on other sites More sharing options...
mjb Posted May 8, 2004 Author Share Posted May 8, 2004 Thanks for the reply. I went and reread the PCI poll at the top and it is still confusing to me. Seems like everyone's doctor has different statistics and I guess that's the thing I'm really wondering about. Is there a significant advantage, statistically, to having it done at this point. Our doctor says with chemo only, there is a 25% chance it will show up in the brain - I've seen a lot of other percentages on the boards. I guess it's just everyone's best guess. Quote Link to comment Share on other sites More sharing options...
S. Jane Posted May 9, 2004 Share Posted May 9, 2004 PCI is such a tough decision. My Dad recently decided to go ahead with it after MUCH consideration. Actually, his doctor and the doctor we had a second opinion with both agreed. The doctor's recommendation weighed in heavily with Chick. He had decided against it from all the research, but changed his mind on the doctor's recommendation. I did read that some doctors were trying it with extensive stage so that they would avoid brain mets. If you need more reading material, I can help you with that. The largest study seems to have concluded in 1999 with 987 patients. http://content.nejm.org/cgi/content/short/341/7/476 http://www.guideline.gov/summary/summar ... 9&nbr=2685 http://www.cancercare.on.ca/1175.htm Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 9, 2004 Share Posted May 9, 2004 MJB, I am facing that decision also. They'll be doing another brain scan this Wednesday and am to see rad onc. for results Friday. My medical oncologist and primary seem to think it's safe BUT my radiation oncologist is hesitant. I've had some minor brain damage before from a rare stroke at age 30. So here I am on the net, searching. You might want to search on "radiation induced necrosis" and brain (use quotes for phrase then a comma then the word brain - try google) From what I extrapolated (and don't count this as TRUTH) The justificiation for "no damage" is that cancer cells are growing quickly but not brain cells. However what the patient is generally not told is that the brain swells from the radiation (to differing degrees). This swelling causes damage to the white matter of the brain. There have been cases of blindness, deafness, seizures and dementia. Side effects do not occur until 6 months to 2 years after. 2 years seems the average time for serious effects to display themselves. Also, damage can be done to veins/arteries. The radiation scars them and makes them less likely to carry oxygen. I have read an article or two that indicates that since the serious after effects do not occur until two years after, doctors feel it is acceptable, given the average death rate of this cancer. Now, as to the last, I believe I saw it mainly in personal stories rather than research articles. It's such a hard decision, it has my head spinning. Quote Link to comment Share on other sites More sharing options...
mjb Posted May 9, 2004 Author Share Posted May 9, 2004 Bean Si & S Jane - Thanks for the input from both of you. I will go read the urls that are linked and do a search on the term you mentioned. Yes, it is a hard decision. My thoughts and prayers are with you. Thanks again. Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted May 10, 2004 Share Posted May 10, 2004 This is such a hard decision - and I think the worst case scenario is getting brain mets after PCI. This is a real possibility! My mom is leaning away from PCI for several reasons, one of which is, the stem-cell treatment she is supposed to get soon will use a type of chemo which is believed to cross the brain/blood barrier. The thought of long-term side effects concerns my mom, also. Her mother died of Alzheimer's, so the idea of being mentally "compromised" is scary for us. Also, we live right near a top-notch radiology facility, so we are confident that spot-treatment for brain mets would be handled well. Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 10, 2004 Share Posted May 10, 2004 MJB, I had a difficult time deceiding if I should have PCI. I chose to do it then my MRI showed 2 mets in my brain already so I had 18 rounds of whole head radiation. I am having what I hope are just late side effects at this time. Dizzines, Nausea, bad memory that could be the age LOL!! Started the rad on Feb 2. My med on was not for it & of course my rad onc was. It's a personnel choice. Good luck to you. Rachel Quote Link to comment Share on other sites More sharing options...
mjb Posted May 11, 2004 Author Share Posted May 11, 2004 Thank you all for the input. We visited the radiation doctor today and my husband will start radiation treatment to the lung on Thursday, and he has decided to go ahead with the PCI following that - pending the results of a CT or MRI of the brain following the lung radiation. My husband, the oncologist handling the chemo and this radiation oncologist are all in favor of aggressive treatment because he has responded so fast and cancer has almost disappeared. So we will go with that decision and pray for the best. I really appreciate you all sharing your experience and your concerns with me. Bean Si - best of luck making your decision and let us know how you are doing. To the rest of you, my thoughts are with you. God bless. MJB Quote Link to comment Share on other sites More sharing options...
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