SDianneB Posted July 30, 2004 Share Posted July 30, 2004 I know this is a somewhat controversial topic, but wanted to share with you what the Radiology Oncologist said to me this morning. First, I'd read an article about this in the JAMA, and several other sources that gave it high marks for increasing long term survival, so I'd really already made up my mind to have it done. When I talked to the doc this morning, he said that if I were his sister or wife, he'd be "jumping up and down on me" to have it done -- he would insist, no question. He said that they knew (meaning he and his colleagues in the Radiation Oncology field) for a long time that the lion's share of recurrence happened in the brain, so it made sense to them that therapy to the brain would potentially head off stray cancer cells. Now, there are studies behind them that prove what they "knew" all along. He said that of the patients he has, those with the longest survival times under their belt had this treatment. He feels very strongly that with limited stage SCLC, this is a no-brainer (no PUN!!!). He also said that we would sit down and have a long detailed discussion before this started, including my family & friends if I want, so that everyone knows what to expect. They also have patients who will talk to me if I want, so I have many resources avaialable to me should I decided to explore further. This isn't anything earth shattering, but I just wanted to share what he said this morning. It made me feel a bit easier about having this down the road. Dianne Quote Link to comment Share on other sites More sharing options...
Donna G Posted July 30, 2004 Share Posted July 30, 2004 In our local lung cancer support group we have several 4 and 5 yr survivors of SCLC that had preventative brain radiation and they are still close buddies with NED. Wishing you the best also. Donna G Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted July 30, 2004 Share Posted July 30, 2004 Dianne, sounds like you've got a great radiation oncologist, to speak to you so openly and honestly about his own personal opinion on the procedure - I also think it's great he's got other patients that are willing to talk to you about this. Dave had PCI last September after successful chemo and radiation to the chest. I won't lie to you, the PCI was harder on him, we believe, then the radiation and chemo which he had simultaneously. He was just starting to feel better after the chemo stuff when he did PCI. It took him another three months to return to work part time and three more months I think to work full time. I think it was mostly fatigue. But he, nor I, regret him doing it. His attitude all along and I agree is to do every treatment possible to get rid of the cancer. Now he's got a recurrence but in his right frontal sinus cavity and surrounding bone, pushing into his brain. But it's not IN his brain. And who knows, if he hadn't had PCI maybe it would be in his brain now, too. I say go for it, but be prepared for months afterwards to be fatigued, etc. Dave also had brain swelling after the very first day of PCI and had to go on decadron (steroid) back then. Steroids make him psycho. So be prepared for that kind of thing, too. But as long as you keep telling yourself you (and your family and friends) can make it through this, you can. Best of luck and keep us posted! Karen C. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted July 30, 2004 Share Posted July 30, 2004 Diane, The way I see it, any and every kind of insurance I can take out to prevent recurrence, I will. If they'd offered me PCI, I'd a grabbed it and said thank you. When it comes to cancer cells, ain't no such thing as "too dead". Good luck to you, dear. XOXOXOXOXOX MaryAnn Prayers, always... Quote Link to comment Share on other sites More sharing options...
SDianneB Posted July 30, 2004 Author Share Posted July 30, 2004 MaryAnn -- ain't it the truth! I'm with you -- whatever gives me reason to hope is good! Speaking of hope -- I hope you will post a lot, because I love looking at that cute little picture you have with your posts!! Dianne Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted July 30, 2004 Share Posted July 30, 2004 Diane, The picture of Happy Dog is a gift from our own Rick B. Truly she bears no real resemblance to me, mayhap just a wee bit of ireverence of attitude... In the face of this beast, something about Happy Dog's ears flapping in the breeze makes me smile. A photo of me wouldn't make me or anybody else smile like that! XOXOXOXOx MaryAnn Prayers,always... Quote Link to comment Share on other sites More sharing options...
Addie Posted July 30, 2004 Share Posted July 30, 2004 When it comes to cancer cells, ain't no such thing as "too dead". Amen, MaryAnn!! I'll be having the PCI too. My onc recommends it....and Dianne, I'm happy to read your doc's comments too. For all the potential side effects even of chemo and chest radiation...so far I've been pretty lucky not to suffer a good many of them. I can only hope that it will be the same with PCI. I asked one of the rad. oncs today how many Gys are given and how many treatments usually....and he said 25 Gys and 10-12 treatments. Doesn't sound too ominous since I'm getting 180 Gys to the chest...but then again, we're talking the brain here. Still...I expect to get a lot more details before I actually go thru the procedure and I rather doubt, if all the risks they told me about before I started the lung radiation didn't deter me....that anything will talk me out of PCI either. I'll take any possible extra assurance that the cancer won't met to my brain....for to quote a very wise woman, "ain't no such thing as 'too dead'." Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 31, 2004 Share Posted July 31, 2004 Dianne, Thank you for your post. I'm sure it has been discussed at length here, but I feel that it is worthy of more discussion. My mom will have to make this very difficult decision. Particulary difficult for an 83 year old woman who lives independently-who may face losing that independence if complications or side effects set in. Her onc is split on the idea, due to her age-typical, won't commit, "no right answer". In his defense he probably is right given her circumstance. Her radiologist won't go near any older person with neurological problems ie Parkinson-like symptoms. This doesn't apply, but I thought it was interesting. I guess studies use age 60 as the no-brainer point according to one opinion we heard. After 60's he said people tend to have more trouble with long term side effects. Just one opinion. Thank you for raising this important issue, as always, I learn so much for all the kind people here. I love your attitude! Nancy Quote Link to comment Share on other sites More sharing options...
laberl Posted August 4, 2004 Share Posted August 4, 2004 I'm a few days late on this but mom had a doctor's appt today to discuss PCI. Her Onc wants to do one more round of chemo (for good measure I suppose), let her rest for a month, and then do PCI--that is of course if NED has stopped by for a while. So thank you all for posting your thoughts. I know it's always a tough subject. At this point she plans on doing it-but am not really sure she knows of all of the risks/side effects. Quote Link to comment Share on other sites More sharing options...
twodogs Posted August 5, 2004 Share Posted August 5, 2004 SDianneB and Addie, The evidence is overwhelming. I know that some people elect to not have this procedure and I always assume there are other factors at work there. I completed my PCI last December. I believe it was 15 sessions, but it could have been more or less. I had taken a month off from any other treatments following my last chemo session. I felt so good I would have taken more time off, but, my radiation doc was pretty tight on my butt about getting it done. So far, everything is looking good. I'm still fighting fatigue and anemia but that's not too bad considering the process we go through. I got hit when I was 63. Between advanced aging, chemo-brain and PCI I can just about get away with doing anything I want and blaming the mistakes on one of my ailments. Quote Link to comment Share on other sites More sharing options...
john Posted August 5, 2004 Share Posted August 5, 2004 What will be interesting in the future is to see if radiosensitizers (like Gadolinium Texaphyrin) will either increase survivor rates or at least decrease the small chance of neurological problems Also some oncs actually think it is good for Extensive SCLC also and as someone mentioned there are clinical trials with NSCLC Quote Link to comment Share on other sites More sharing options...
Addie Posted August 5, 2004 Share Posted August 5, 2004 Between advanced aging, chemo-brain and PCI I can just about get away with doing anything I want and blaming the mistakes on one of my ailments Omigod...this had me spitting water all over my keyboard!! I figure at nearly 58 I'm supposed to start losing a few of my marbles anyway....but yes, twodogs....'tis nice to have some other excuses...eh? Thanks for your input. It is a big help to hear from someone who's been there/done it already....and who came through it all with her humor still solidly intact! If the funny stuff is still there for me after PCI....I figure I can fake the rest of it! Quote Link to comment Share on other sites More sharing options...
twodogs Posted August 6, 2004 Share Posted August 6, 2004 Addie, I'm glad you found the humor in the post. Here's some more, I'm actually a him and not a her. But, don't let that little faux pas, (sp), on my part detract from the enjoyment. That's part of the beauty of this site. After what we've all been through, the last thing I'm going to have is a sexual identity crisis. My four kids and seven grandkids would never believe it. I should have done a bio when I first joined up, but, didn't. Sorry. Quote Link to comment Share on other sites More sharing options...
Andrewsmom Posted August 10, 2004 Share Posted August 10, 2004 For what it's worth, My onc also said that he would absolutely advise his wife, sister, mother or anybody else to have it. I did and am so relieved to have done it. I was a little creeped out by the mask and the whole experience but I had really nice young (I swear they looked like teenagers) radiation techs who talked to me through the intercom while I was getting treated. It helped alot. The only side effects I've noticed are thinner hair and some forgetfullness. But, I'm a working Mom going through menapause so who knows what is causing the forgetfullness. Good luck! Quote Link to comment Share on other sites More sharing options...
SDianneB Posted August 10, 2004 Author Share Posted August 10, 2004 Thanks for sharing some of your experience, Andrewsmom. The therapists giving me my daily lung/chest treatments are THE greatest, I think. I asked a few days ago if they would be the same ones giving me my PCI, and they will be - YAY! Knowing that I'll see their smiling faces during that time boosted my confidence level a great deal, because I know they care about me as a person and not just a patient. I know this because a week after something happens that I mention, they will ask me about, so I know they pay some attention to what I say! Much of this is scary while it's unknown. So far, I've found out though that nothing has been as bad as what was described to me in advance! For example, before I had bronchoscopy, I was told that the stuff they spray in my mouth was THE most file tasting stuff ever. It didn't taste good, but wasn't bad at all -- nothing like I thought it would be from what they warned me about. I'm less and less concerned about PCI as the days go by and the more I talk to people who have had it done, as well as the docs and other care providers I talk to. If it's ok with you, I'll join you in that menopausal forgetfulless club, as I've been there a while myself!! Thanks again, Dianne Quote Link to comment Share on other sites More sharing options...
MayFrog Posted August 13, 2004 Share Posted August 13, 2004 I'm a little late replying to this.......but wanted to say "thanks" Dianne....I will probably be having PCI down the road. Had already decided I would jump at the chance to kill off as many of these cancer buggers as possible. Your post was just icing on the cake!! And, TwoDogs, I'm right with ya!! I already blame everything on chemo-brain.....having PCI will just give me a better excuse for any lame-brain things I do!! Thanks to all of you who posted with your experiences. This site is awesome! Mary Quote Link to comment Share on other sites More sharing options...
Rachel Posted August 16, 2004 Share Posted August 16, 2004 I didn't have the chance for PCI but was going to do it. I was however disappointed in my Med Onc as he didn't recommend it. I did have brain mets & did 18 brain rads. This was in March & I am finally getting rid of fatigue. Good luck to you. You'll do great. MaryAnn, I just feel good all over when I see that dog. Always think of you when my dog has his head out the window. Quote Link to comment Share on other sites More sharing options...
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