daggiesmom Posted October 13, 2004 Share Posted October 13, 2004 Dear Dr. Joe, I was wondering if you could give me your opinion about PCI treatment. In my case I was diagnosed in 4/02 and completed radiation/chem in 6/02. I have had routine CAT scans and 3 month follow up visits since then. I've had a few instances of bronchitis/fever ( maybe 3). I experienced pneumonis (?) infection in 11/02 due to radiation, but that subsided after about a month. Aside from that, I have been basically healthy, no headaches, some neuropathy in feet in hands, but not bad. My doctor, who is wonderful, has been very pleased with my response to treatment. I have brought up the question of PCI to him, and he just doesn't seem to want me to do it. Yet, it seems that that is the standard treatment for follow up SCLC limited diagnosis. Is that so? Why would he not want me to do this? Are the side effects that bad? I'm only 51 years old; would these side effects lessen my quality of life? I totally trust my doctor, but I would like your opinion on this. I believe the poll that was taken on this board concerning PCI was a 50-50 split. What would you go for if you were me? Quote Link to comment Share on other sites More sharing options...
Connie B Posted October 13, 2004 Share Posted October 13, 2004 Hi Joannie, I hope you don't mind my two cents worth on your question here, but I just wanted to share with you that I have two wonderful gal's in my support group with SCLC (one limited the other Extensive) and they were both offered PCI. The one is a 5 year survivor and other a 4 year survivor. One gal is in her late 40's the other in her 60's. Neither one of them has any long term side effects. They had a low dose and were given 15 treatments. They both highly recommend anyone with SCLC to have this done. They were told it's a preventive treatment, not a 100% but they have had good results from patients that have done this. I have also heard that some doc's agree to it, and some just don't. Would you call that a judgement call? Maybe!!! Best wishes and good luck. Con Quote Link to comment Share on other sites More sharing options...
Addie Posted October 13, 2004 Share Posted October 13, 2004 Hi Joanie.... I'm going to be interested in what Doc Joe has to say on this too. I will start my PCI on November 1st. I just finished chemo on Sept. 15th and my last radiation tx was August 11th. From the beginning, my onc has told me he recommends that I have the PCI, following treatment. Now...in your case, you're already two years plus, out from treatment, never mind diagnosis!! So...I would think that if any little micro cells were going to be a problem for you...they'd have shown up by now! Granted...I am NOT a medical professional here ....but it seems logical to me that for PCI to be of any real benefit (and remembering that nobody knows for sure who will get brain mets or not, or who will have micro cells "hiding" or not!) it needs to be done soon after chemo and/or radiation. I'm sure Doc Joe will correct me if I'm wrong about that. The further out you get, Joanie....the more you can figure that in your case, PCI wasn't necessary! At least that is what makes logical sense to me. I know the brain is one place that sclc likes to go....so if it was gonna show up there because a person did NOT have PCI....I figure it would have shown up in 2 plus years time....eh? But at the point where I sit....it seems good "protection" against any micro cells that might be left in me....to have PCI...particularly since most of my cancer was in the lymph nodes. My primary tumor was very small. If I were a couple of years out from dx or the end of tx....I'd be figuring my chemo and radiation took care of things and that I didn't need the PCI. From what I've read (and again these are stats..but ones that sound REAL good, compared to some!!) if you make it to two years from the end of treatment, there is only about a 10% chance that the cancer will recur. If you get to three years out....that drops to only 5%. You have time on your side, sweetie...and you're where I want to be...a couple of years out from treatment with NO recurrence!! Again, I'm not a doctor...but this is what sort of makes sense to me. Still...I understand where your question comes from...and will be watching to see what Doc Joe says...cuz I could be totally wrong on the time thing! Still.....I wanna be where you are...and I'm so glad for you that you're there!! Quote Link to comment Share on other sites More sharing options...
Nancy B Posted October 13, 2004 Share Posted October 13, 2004 Hi Joanie, I, too, am looking at PCI. I finished chemo on Sept. 9th and have been doing all the ct, pet and mri scans and will probably start PCI the end of October. My oncologist said that so many times they get the lungs all squared away and 6 months down the road, its in the brain. I would sure think that being 2 years out everything should be OK for you - I sure hope so. Looking foward to hearing from Dr. Joe too. Like Addie said, I want to be where you are. Take care. Hugs, Nancy B Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 13, 2004 Share Posted October 13, 2004 Hi Joanie, complex question but I would agree with your doctor. I think the point that people miss about PCI is that it is not just to prevent the cancer from recurring in the brain, it is to improve your chances of survival period. The arguement that it is better to wait for it to show up in the brain to do the radiation is understandable but misses this fact: if the brain is the only place for the cancer to show up and you wait for it to show up there, you have missed your chance for a cure. The reason is that once cancer in the brain shows up, it can be treated but by and large will not be cured with radiation. PCI can prevent it from ever showing up in the brain and therefore allow some people to be cured who would have been destined to die due to a brain recurrence. However, in your case the odds of it coming back in the brain are very slim. Congrats! It is for the exact reason that Addie pointed out, you are so far out now that it is very unlikely to recur in the brain. Here are the graphs directly from the study published in the New England Journal: http://content.nejm.org/cgi/content/full/341/7/476/F2 As you can see from these graphs, the vast majority of people who suffer a brain recurrence do so in the first two years. After that the risk is very small. Also if you look at the survival graphs, the majority of people who die of the disease will do so in the first two years and after that the slopes get very flat meaning that the majority of people alive and disease free at two years will be cured. So I am a very big proponent of PCI because of the improvement in survival but it should be done soon after the initial treatment has been completed because brain mets start showing up very fast (nearly 50% of people in that first year) and if you can nip them in the bud, I think you should do so. Another fact I want to point out is that these graphs are based on older studies. The survival with modern chemo and radiation for limited stage small cell is better than these graphs show. But that improvement does not decrease the risk of brain mets. As the treatment of the tumor in the lung improves, the magnitude of the benefit of PCI will increase.[/i] Quote Link to comment Share on other sites More sharing options...
Snowflake Posted October 14, 2004 Share Posted October 14, 2004 Dr. Joe, The site you included requires being a registered user...can you post the article instead of just the URL? Thanks, Becky Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 14, 2004 Share Posted October 14, 2004 Well I give up, won't let me copy and paste the graphs.....sorry. Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted October 14, 2004 Author Share Posted October 14, 2004 Thanks so much for your fast reply - and I really LIKED your reply!!!!!!!!!!!!!!! Also, thanks to all who responded to this question. I feel relieved and happy. I wish that for everyone. Joanie Quote Link to comment Share on other sites More sharing options...
SDianneB Posted October 14, 2004 Share Posted October 14, 2004 Thanks from me as well. I'm going back to the Radiation Oncologist next Monday, and I'm sure we will discuss this. I was back and forth on it for a while, but after doing a lot of independent reading and discussing it with various people in and out of the health care field, I've come down squarely in favor of it, and once they give me the go ahead, I will have it for sure. The last thing that kept me iffy about PCI was the potential for neurologic deficit, specifically short term memory loss. At age 51, I'm sure that's going to happen more and more often anyway, but from what I've gathered, just having lung cancer means there will probably be neurologic manifestations of the disease itself, and then add to that the chemo, and who is to say what is the real cause -- all that, or the PCI? Even so, the benefits from PCI far outweigh those risks, I believe. The first day I ever met the Radiation Oncologist, he said to me that they (at the center where I'm treated) are all on my side, and are all working with me for a cure. Yes, he said that word, "cure." No promises or guarantees other than they will be doing their part and I'll do mine. They are very positive that PCI will be beneficial to me, and since I have much trust in them, that's a major reason why I'm sure I'll agree to it if and when it is recommended. Thanks to all of you chiming in on this -- it's quite controversial! And a special thanks to you, Doc Joe. You're quite a human being to give of your time and expertise to us as you do. Di Quote Link to comment Share on other sites More sharing options...
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