Guest Posted February 12, 2003 Share Posted February 12, 2003 I was diagnosed in May 2002 with Small Cell Lung Cancer, Limited. I have completed 4 months of chemo and 7-1/2 weeks of radiation. My cancer status is now in remission. I thank God every day! Since, as far as we know, the cancer has not spread. My radiologist oncologist has offered me PCI as a preventative measure to help reduce the chances of getting brain metastases. My dilemma is that I am struggling to decide if I should risk taking it, or just put myself in God's hands in the hope that I will not get the brain metastses. My time is running out for a decision. I have to definitely decide by Mon. Feb. 17. Is there anyone out there with the same cancer status who has opted to take the PCI? I desperately need your help. Did you recently have PCI, or has some time passed? I am interested in what side effects you may have experienced. Did you have any dimenished brain functions? Did you loose your hair? Did it grow back the same as before treatment? Was your hair lose permanent? Do you think it has affected your quality of life? Do you think it has helped you? I know I am asking a lot of questions, but this is very scary for me. Also, I have been to other doctors for their opinion and they are all different, and they do not agree. That is why this is so confusing. Thanks and God Bless, Jayne Quote Link to comment Share on other sites More sharing options...
SandyS Posted February 12, 2003 Share Posted February 12, 2003 Jayne - I'm almost at the end of my treatment, and very anxious about PCI. It's a tough choice to make (for me, at least). Let's see what everyone else says! SandyS Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted February 15, 2003 Share Posted February 15, 2003 As of now, most medical sources say that PCI is definitely the way to go with limited stage SCLC in complete remission. With extensive stage or less than complete remission, it's not quite so clear cut. I did it and finished in mid December, 02. Had essentially no side effects except for complete loss of what little head hair I had left after chemo. I'm told to expect at least three months before any regrowth but that it will grow back. Of course you worry about late effects. The studies show a consistent 50% decrease in the risk of future brain mets and aa 5% increase in long term survival. Sam Quote Link to comment Share on other sites More sharing options...
Guest Posted February 15, 2003 Share Posted February 15, 2003 Sam, So glad to hear you are doing so well. Like you have mentioned, God Bless All of Us. You will be in my thoughts and prayers. I was somewhat encouraged to hear that you opted to take the PCI. But I do have some more questions. 1) Do you know what dosage they gave you, and daily dose, over what period of time? 2) Where did you get your info about PCI. From studies, other doctors, etc.? 3) How did you learn about the specific side effects? Hope you don't mind me asking all these questions of you, but this is a very serious and scary decision for me., or for that matter, for anyone facing this. I have been researching this subject for two weeks. I have read so many studies, talked to cancer survivors all over the country, have talked to three doctors in my location and one doctor out of state. One doctor advises to take it, the other three doctors are advising against it. So with all this accmulated information, I had decided against taking the PCI. The reason being I was too scared of what the possible brain dysfunction that could manifest due to this treatment, short and long term. I also was unhappy about the possiblity of my loss of hair being permanent. I could live with the hair problem if I knew there was no brain dysfunction. But the information that I have does not convince me of that. As a matter of fact, I could not find any info that even discussed the side effects. Right now I am feeling good and am able to function. I am concerned that the PCI might affect my quality of life for whatever time I have left. My family is very much against it, but will stand by me in whatever I decide. Before I definitely decided on a decision, I posted my message on the board to see what kind of answers I would get. Anxious to hear from you. God Bless, Jayne Quote Link to comment Share on other sites More sharing options...
Guest Posted February 15, 2003 Share Posted February 15, 2003 SandyS, Glad to hear you are nearing the end of your chemo and radiation. Yes, you might be faced with making the decision of taking the PCI. Ultimately, we have to make our own decision. But, for me, it is better to get as much info as you can get so that you can make an informed decision. Like one of my doctors said to me, once you take the PCI, it is not reversable. Let us see what others have to say. God Bless, Jayne Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted February 15, 2003 Share Posted February 15, 2003 Hi guys, I read, studied, talked and prayed a lot over my PCI decision and believe I made the right one. There were two major questions to be answered. Does it do any good (better survival, whether or not if prevents brain mets)? Does it do any harm (future neurological dysfunction)? The best answer so far on question one seems to come from an article published in the New England Journal in August, 99. They looked at several studies and combined the results statistically (a met analysis) and found that in otherwise similar patients, there was a 15.3% three year survival rate in no-PCI patients and 20.7% in the PCI group. Most experts use this reference when they recommend PCI. Here’s the conclusions – “Results The relative risk of death in the treatment group as compared with the control group was 0.84 (95 percent confidence interval, 0.73 to 0.97; P= 0.01), which corresponds to a 5.4 percent increase in the rate of survival at three years (15.3 percent in the control group vs. 20.7 percent in the treatment group). Prophylactic cranial irradiation also increased the rate of disease-free survival (relative risk of recurrence or death, 0.75; 95 percent confidence interval, 0.65 to 0.86; P<0.001) and decreased the cumulative incidence of brain metastasis (relative risk, 0.46; 95 percent confidence interval, 0.38 to 0.57; P<0.001). Larger doses of radiation led to greater decreases in the risk of brain metastasis, according to an analysis of four total doses (8 Gy, 24 to 25 Gy, 30 Gy, and 36 to 40 Gy) (P for trend=0.02), but the effect on survival did not differ significantly according to the dose. We also identified a trend (P=0.01) toward a decrease in the risk of brain metastasis with earlier administration of cranial irradiation after the initiation of induction chemotherapy. Conclusions Prophylactic cranial irradiation improves both overall survival and disease-free survival among patients with small-cell lung cancer in complete remission. The second question has been best answered so far by a European study published in the spring of 2002. Here’s the text of the abstract. “PURPOSE: Aim of this study was the assessment of neuropsychological changes after whole brain irradiation. PATIENTS AND METHOD: 64 patients were tested before, and 29 after whole brain irradiation, including 28 patients with small cell lung cancer (SCLC) before prophylactic cranial irradiation (PCI) and 36 patients with cerebral metastases before therapeutic cranial irradiation (TCI), as well as 14 patients after PCI and 15 after TCI (Table 1). Intelligence, attention and memory were assessed applying a 90-minute test battery of standardized, neuropsychological tests (Table 3). RESULTS: Patients with SCLC showed test results significantly below average before PCI (n = 28, mean IQ = 83, SD = 17). Neither after PCI, nor after TCI the tested neuropsychological functions decreased significantly (Tables 4, 5). A comparison between SCLC-patients with and without cerebral metastases before whole brain irradiation showed better test-results in patients with cerebral metastases and fewer cycles of preceding chemotherapy (Table 7). CONCLUSION: Neuropsychological capacity in patients with SCLC was impaired even before PCI. Possible reason is the preceding chemotherapy. Whole brain irradiation did not induce a significant decline of cognitive functions in patients with PCI or TCI. A decline in a longer follow-up nevertheless seems possible. The crux of it is that patients treated for SCLC have decreased neuropsychological function compared to “normal” but it was there whether or not they had PCI. Theories blame this on chemotherapy alone, long-term smoking and just the effect of the cancer. Of course it’s a relatively small, short term study and I would like to see more but it’s the best we have right now. My radiation oncologist says that at a big meeting last year, they could not find anyone to argue on a panel, against PCI in LS-SCLC complete responders. My oncologist, my radiation oncologist and a second-opinion radiation oncologist all recommended it without reservation. I can’t say that I found any good information about specific neuropsychological problems. My docs talked about mild attention and memory problems (I had that already). They also talked about fine motor problems and I do seem to have a mild tremor but that developed during chemo. You can find horror stories on the net but that doesn’t prove anything. Bottom line is that there isn’t any really good scientific data on long term problems but short term, two years and less, there’s nothing that says that PCI causes problems. It’s believed that PCI DURING chemo was a problem but that’s not done anymore. How much? After doing this for over 20 years, they still don’t know. Studies are being done. It looks like higher doses are more likely to prevent mets but not necessarily increase survival. The range is 8Gy to 40Gy in 1.5 – 4 Gy fractions. Most people go somewhere in between. My second opinion doc said 36Gy in 18 fractions and my regular doc said 30Gy in 15. I went with 30. I would recommend it to my patients but it is still a tough decision. Sorry to get so wordy. Good luck. God bless us all, Sam Quote Link to comment Share on other sites More sharing options...
Hope Posted February 16, 2003 Share Posted February 16, 2003 Dr. Sam wrote two good posts, and I wanted to add our experience with my mom's decision. She was dx w/ sclc in 0l/02, limited/no mets. She underwent chemo and radiation for 5 months. She is now in complete response (no sign of ca). When she finished radiation, we had meetings with the radiologist and oncologist. I had read much of the information that Dr. Sam quoted on the internet, so we had lots of questions. Initially, the oncologist urged my mom to get the PCI. We talked to the radiologist later that day, and he was very gung-ho about PCI, in fact so gung-ho that it made us leary LOL! He said that my mom would have NO side effects from the PCI (despite what I had read), and that if she had the PCI she would be cured from EVER getting mets to the brain. My mom decided to think about it for a few days, and when she went back to the hospital for some rx a few days later, her oncologist stopped her in the hall and said he had been thinking about her and had changed his mind, he didn't think she should do the PCI. He said she was doing so well with her response to the chemo and radiation and that he had talked to several other doctors and they all had at least one horror story to tell about patients who had the pci (sorry if that is upsetting, I just want to relate what he told us and how we made the decision). So he advised her to NOT get the PCI, and said if brain mets occurred later we would do radiation at that time. My mom is still in complete response, and is doing great. I hope that telling this story helps in some way, and doesn't cloud the issue for you. I think it is good to hear both sides of the story so you can make the best decision for you. Sorry so long. Hope Quote Link to comment Share on other sites More sharing options...
Guest Posted February 16, 2003 Share Posted February 16, 2003 Dear Hope, Thank you for responding in a frank and honest manner about your Mother's experience. You are right, it is best to get both sides of the story. As you have read, in my previous posts, your Mom's experience is very similar to mine. My radiologist has been gung-ho about me taking the PCI also, which has made me uneasy. I am so glad I posted on this message board, as this is exactly the kind of input I was hoping I would get, not only for myself, but for all the others out there who may be contemplating this decision. Thanks again for sharing your story. You have helped me so much with such a tough decision. After two weeks of great distress, I can finally say, I can make my decision. Sending Best Wishes to your Mother for continued remission. So happy to hear she is doing so well. God Bless, Jayne Quote Link to comment Share on other sites More sharing options...
Guest Posted February 16, 2003 Share Posted February 16, 2003 Hi Dr. Sam, Thanks so much for relaying the studies you have read and your conclusions. The information you have provided is helping very much. I now have enough information to weigh the pros and cons, and to reach a decision that is right for me. I know what a tough decision this was for you too. The torment that you had to endure before you decided. Ultimately, I have discovered, all any of us can do, is to make the decision that we believe is right for us. With no regrets, never say, I should have. Let it go, don't look back, and move forward with our lives. God will take care of us. God Bless, Jayne Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted February 16, 2003 Share Posted February 16, 2003 You're abslutely right Jayne. Each patient needs to get the best information that they can and make their own decision. There is no right or wrong decision that fits all. It's truly a shame that we have to stress over it so much though. I know that your decision will be right for you. Sam Quote Link to comment Share on other sites More sharing options...
Guest Posted February 20, 2003 Share Posted February 20, 2003 Hi Everyone, I talked to my doctor on Tuesday and advised him that I decided not to take the PCI. After reviewing all the information, I decided that the risks outweigh the benefits, and it was not the best procedure for me at this time. Want to thank everyone for your most welcome input and help. God Bless, Jayne Quote Link to comment Share on other sites More sharing options...
Hope Posted February 21, 2003 Share Posted February 21, 2003 Thanks for letting us know about your decision. I hope that my post didn't sway you unduly, but I think it's really true what you said about everyone having to make their own decision. And you made the right one for you. Hugs, Hope Quote Link to comment Share on other sites More sharing options...
john Posted March 5, 2003 Share Posted March 5, 2003 Here is some more info on PCI http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract God bless john Quote Link to comment Share on other sites More sharing options...
SandyS Posted March 6, 2003 Share Posted March 6, 2003 Well you guys make it a tough choice.......but I'm leaning towards having it done in April...........I feel like at the ripe old age of 41 I need to take EVERY little percentage to extend my survivial! Sandy Quote Link to comment Share on other sites More sharing options...
Laurie Posted March 6, 2003 Share Posted March 6, 2003 Hi SandyS! It is funny that you should bring it up today... My Mom is in her consultation appointment for PCI today... right now.. I was just going to call and see if she is home yet. From talking to her i think that she is going to have it done too. She thinks she is going to be around for a very long time too! I am sure that we will talk more about this. Praying that God will lead you and Mom down the path of recovery and happiness. Laurie Quote Link to comment Share on other sites More sharing options...
Laurie Posted March 6, 2003 Share Posted March 6, 2003 Just spoke to Mom, Dad and my brother actually got invovled in this one! She's going to do it.. It is in God's hands from here on in.... Laurie Quote Link to comment Share on other sites More sharing options...
Guest JennyG. Posted April 6, 2003 Share Posted April 6, 2003 I was glad to find this discussion. I was worried about it too and asked my onc who said YES I do need to do that. He thinks the diminished capacity thing is minor and I'm with Sam about already feeling effects. I've felt small signs for awhile now, even before I started chemo, but since just 1 round of chemo it seems a little worse. Of course, ones state of mind in dealing with all of this may have something to do with it. I was really surprised when my brain MRI came back clear, I thought that would explain it. I've read that the risks involve short term memory loss and diminished analytical ability. I also read that the effects may surface in the long term after 2 years. A brain tumor is a pretty frightening thing and I think the odds of that need to be weighed against the risks of the PCI. Pretty tough decision and one that I will be giving a lot of thought. Right now I'm leaning in the direction of having it. I hope more people will continue to post their thoughts on this. Jenny Quote Link to comment Share on other sites More sharing options...
Laurie Posted April 6, 2003 Share Posted April 6, 2003 Jenny, My Mom is undergoing PCI and is a little over half way through she is getting the most agressive amount that she can get 18 trmts. Her cousin is going with her and is having 30 treatments of preventative at the same dose for a brain tumor that was removed. I think we discussed it in more detail in SAM's post.. I'm still here.. the first one. So far my Mom is doing great, her memory seems to be in tact and talking to her one day she was yawning and seemed tired but today she was absolutely upbeat and sounded totally normal and great. As far as the long term, i think you have to look at your family health history and see what strokes, parkinsons etc are running in the family. I've heard that brain radiation can cause them to come out long term. I guess that what the doctor said is that the chemo doesn't penetrate the brain so the PCI is good in case there are cells up there undetected on the PET that can come back later. It is a hard decission but my Mom was all for it so thats what we are doing. Hope this helps you. Laurie Quote Link to comment Share on other sites More sharing options...
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