jstdzy Posted August 14, 2009 Share Posted August 14, 2009 Help!?!?! I just left my appointment with my ONC to discuss my latest CAT. She totally dropped a bomb shell on me. She starts talking about whole brain radiation as a preventative! My first reaction is just "no way", I went through chemo as a preventative. I know that small cell is a very aggressive cancer, but nothing has been showing up on my CATS or MRI's. I'm a year out from my last chemo, I just feel like this is total overkill! The question is: am I being unreasonable? Should I be more open minded to this? I'm finally feeling half way normal, I just can't imagine going through the fatigue, nausea, etc. again. I posted for Dr. West too. I just feel like screaming! Any and all input would be appreciated! Dana Quote Link to comment Share on other sites More sharing options...
michellep Posted August 14, 2009 Share Posted August 14, 2009 I've never heard of WBR as a preventative either. I'm glad you asked Dr. West about it. Let us know what he says please. Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 14, 2009 Author Share Posted August 14, 2009 Michelle, I just think that is plain craziness! Can you believe it? I am sooo freaking out!! Dana Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 14, 2009 Author Share Posted August 14, 2009 I can't stay on line anymore. I'll be back tonight hopefully Dr. West will have something or someone here will have something about this. Thank you! Dana Quote Link to comment Share on other sites More sharing options...
Patti B Posted August 14, 2009 Share Posted August 14, 2009 (((((Dana)))) I have heard of WBR being a preventative measure for small cell but I have always heard to it as referred as PCI. I am not sure since I have non-small cell. I have just finished 15 treatments of WBR and I have to tell you, it went without a hitch and I feel great. A few headaches and earaches but nothing bad at all. I am glad you are contacting Dr. West - maybe he can give you some insight into this. I wish you only the best no matter what decision you make and if you want info on how WBR goes, PM me. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Sheri Posted August 14, 2009 Share Posted August 14, 2009 Dana, I've been watching your journey and find you to be very fortunate. Normally people with small cell, limited or ext. do not have the option of surgery. It is assumed by the medical profession or the insurance companies that once small cell presents itself it is systemic and chemo and radiation are the only options available. Because your tumor could not be reached for a biopsy, you had the option of surgery. If a biopsy would have indicated small cell prior to a treatment plan, more than likely you would not have had the option for the surgical removal of your mass. I wish my Dad had the option for surgery, he may still be here. There are a few small cell survivors here who have had surgery and have been in remission for a long time. My Dad had the Prophylactic Cranial Irradiation (PCI, probably what your onc is referring to.) and he was tired for a while but it didn't adversely affect his cognitive function. It is a standard treatment for small cell. Seeking research and advice makes you a great self-advocate. I'm pulling for you girl, and am confident you will be around for a long time. Here's a good link to start with: http://www.oncolink.org/library/article ... =45&id=577 Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted August 15, 2009 Share Posted August 15, 2009 Dana. I just finished up a second round of PCI (preventative Cranial Irradiation) (I cut my first round short as I was so tired of feeling like a specimen on a slide under a microscope.). In June when my head went all wonky and the neuros said cancer mets and the radiologist and the RADOnc, stated emphatically that they saw nothing to indicate new mets at all (there is the controversy of is it MS or is it Cancer(long story), right now, all I care about is that it does not appear to be cancer.) We decided to do a little extra PCI "just in case." It is called PCI, when done a preventative, and WBR when done for mets. Now, don't get upst by that, just the fact that your Onc, stated to you as a preventative just means that she/he may have used the wrong letters and there is no mets there. It might help you to also know that in the "statistics: PCI cuts the risk of mets to the brain from about 35% to 15% or less. You will loose your hair, you might have some cognitive functioning problems. The biggest problem for me in that area, is that I have to grope for words on occasion which started with chemo anyway, just a little worse now than before. You might have ear or hearing issues, such as ears feeling clogged up, and not hearing quite as well as before. Your Skin around you forehead and ears may get slight sunburned or have the texture of a sunburn starting tp peel. However, no lotion untill after the treatments on treatment day as the lotion itself may cause a bad burn. All of this should eventaully go away It really is a piece of cake. You will see the Radiation Oncologist, so address all your concerns with him about what to expect and such. And remember, you can always call a halt if that is what you want. If you want more information on how they set it up and such , let me know. I have a wonderful RADONC. who spends the time it takes to answer all my questions and relieve any fears I have. The upside to all of it is, the skin on your face and forehead will be as smooth as a teenagers, you will have all new hair (after it grows back of course) and you can join Patti B's and my "Bald is Beautiful Club!" RElax and take a deep breath, it really will be okay. Dawn Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 17, 2009 Author Share Posted August 17, 2009 Thank you all. That makes me feel alot better. I was feeling like a freaking lab rat. I will try and be a little more opened minded. I will keep you posted, thank you all so much. Dana Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 17, 2009 Share Posted August 17, 2009 Hey Dana, Oh Kiddo, it's hard to be opened minded when you don't have a clue on what the heck to expect. I just want to share with you that many people in my In Person Lung Cancer Support Group have done PCI and are very happy they did and to top it all off, they are doing just fine today and this would be 5+ years after having it. One of my dear friends who had PCI works for the school district as an Assnt Teacher. I try to always remember the early days of this journey. To often we (long term survivors) sound like things are NO BIG DEAL, but when we go through them, they are HUGE and should be treated as such. Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 19, 2009 Author Share Posted August 19, 2009 Thank you all very much for your input. It helped to clarify alot of things for me. First as most if not all of you know small cell is fast growing, very fast. I should have had PCI before or immediatly after chemo, not one year after chemo. I believe my surgeon got all of it by removing the ULL and the surrounding lymph nodes. My ONC wanted to follow up with chemo just to be sure as a preventative. It seems to me the only time the cancer cells had a chance at my brain was before surgery, which was Apr. '08 or maybe even after chemo, either way I should have a brain tumor the size of Kansas in my head at this point. I think what happened is my ONC dropped the ball or forgot about my "unusual" circumstances when I saw her on Friday. So at this point the answer to the PCI question is no, to me it's locking the barn door after the horse is gone, it just makes no sense at this late date. Man I am sooooo sick of this cancer crap!!!! Once again thank you ((((everybody)))), Dana Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 20, 2009 Author Share Posted August 20, 2009 Update: The cancer center called and my ONC thinks it would be very "beneficial" for me to have a consultation with the Rad Doc. So being the open minded person I'm trying to be I made the appointment. It's in mid Sept. I want to see what this guy has to say. Thanks for putting up with me! Dana Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 20, 2009 Share Posted August 20, 2009 Hey Dana, After reading over your profile info, I just have to ask, are you sure you have SMALL CELL LUNG CANCER and not Non Small Cell Lung cancer? Chemo is number one treatment in treating small cell , even after sugeries. What you discribe sounds more like non small cell then small cell. All those that I know who did PCI did it maybe a month or two or three maybe even 4 months after completing chemo. Do you get a copy of your reports after you meet with your doc's? It might be worth your while to look into doing this is you don't already. If you don't have a copy of your dx's report, I would ask for one. I would get all my reports from the day you were dx'd. Quote Link to comment Share on other sites More sharing options...
Patti B Posted August 20, 2009 Share Posted August 20, 2009 Dana- Would it be so terrible to just go along with them and get an MRI of your brain???? If nothing shows up, then maybe everyone would feel more comfortable with your decision not to have the WBR. My doc routinely gives me an MRI every 6 - 8 months (and I have NSCLC) and thats how they found the mets. I am so surprised sometimes when I hear that many people with LC never have an MRI - unfortunately, whether you have SCLC or NSCLC, it likes to take up residence in our brains Just an idea................ Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 20, 2009 Author Share Posted August 20, 2009 My first MRI was in June '08, before they started chemo all clear. When I saw my ONC on one of my follow scans in Dec. '08, I asked her about getting anymore MRI's since I hadn't had one. She checked her notes and ordered one for my next set of scans Apr. '09. I have been a very good girl and get all the scans requested. The only thing in my head is my brain! I have proof of that now! According to the surgeon and my ONC it was small cell it was a little smaller then a dime (I don't remember the exact number). Just having the one small tumor I believe is why nobody thought "small cell". When my surgeon opened me up and saw it he just took everything out. I really believe because of him doing that it just didn't have a chance to spread. After surgery I did have chemo. The only thing anybody said about radiation was the rad. doc that walked in my room after surgery and said "I guess you won't be needing me. Congratulations it looks like you are going to be one of the 5%". I will ask about getting a copy of my dx, I have questions every now and again. Thank you (((Everybody))) Dana Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted August 20, 2009 Share Posted August 20, 2009 Dana, I think I can appreciate where you're coming from. These serious treatments with possible long term issues are pretty tough to pull the trigger on when you don't even have symptoms. I did a 125 mile bicycle ride two weeks before my lobectomy, then came home five days after the surgery and couldn't even put on my own socks! When I finally started regaining some strength from that, it was cisplatin that fried my fingers and toes and gemcitabine that gave me horrible headaches. It's not so easy making these "take your best guess" decisions on whether to take your chances on remaining cancer free without any more treatment, or take a chance on what the treatment will bring. Small cell is just so aggressive that I'm thinking every doctor you see will recommend the PCI. I'm going to support whatever you decide. Best wishes! Quote Link to comment Share on other sites More sharing options...
jstdzy Posted August 21, 2009 Author Share Posted August 21, 2009 (((Everybody))) thank you guys so much, for being so understanding. Dana Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.