kimd Posted November 25, 2003 Share Posted November 25, 2003 My dad had a scare this past week, but he's okay. He's been doing so well w/chemo and left neck area lymph node has really gone down. Late last week, new swelling appeared on right side of neck and his mid-back area seemed to have swelling. We were all very anxious to see what onc would say yesterday when he went for chemo. Doc checked out both places and satisfied not new cancer growth. My question is when do they do the PET scan? He had CAT scan and nuclear bone scan which found the place in his left shoulderblade. From my reading of posts, sounds like PET scan shows other areas. Will the onc do this at the end of his 1st 4 cycles of chemo which is 12/17 or when? I just want to make sure that doc isn't missing something! Thanks for any info and when my dad should have this done? Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted November 25, 2003 Share Posted November 25, 2003 Hi, PET scans are unfortunately not "standard" care in SCLC. There are extensive studies that show its usefullness with staging and follow-up of NSCLC and it is pretty much standard care with NSCLC. Most oncologists know that it is just as good with SCLC and do it routinely. Others don't do them at all with SCLC. It also depends somewhat on what's available in your area and what your insurance pays for. Most insurers don't balk but some do with SCLC because it is not "standard" care. Eventually it will be. Discuss it with the oncologist and see what he plans. He might get one after finishing chemo. Sam Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted November 28, 2003 Share Posted November 28, 2003 Hi Kim, Sam answered your post very accurately. I will add my two cents here as well. If your Dr. doesnt feel a PET scan is neccesary i would push for it anyway. To me after 4 cycles of treatment would be the perfect time to do the scan. If the dr. is hesitant about it just keep insisting that you want this done. Trust me it will not hurt one bit to have this test performed at this stage of your fathers treatment. It is a perfectly logical thing to do and also will work wonders for your piece of mind. Although they are not 100 % accurate i would rather have false positives than miss something and regret it later. A simple CT scan is not enough in my opinion to declare anyone with SCLC disease free.I also believe at the end of all treatments prior to being declared NED that everyone with SCLC should have a PET scan. In your fathers case since he is extensive this scan will show any possible new mets anywhere else. Good luck and best wishes to you keep us posted..... Regards Greg Quote Link to comment Share on other sites More sharing options...
betplace Posted November 28, 2003 Share Posted November 28, 2003 Dumb Question here: I am getting that NED means cancer gone, but what do the initials stand for? Thanks Betty Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted November 28, 2003 Share Posted November 28, 2003 Betty, not a stupid question at all NED means no evidence of disease. Quote Link to comment Share on other sites More sharing options...
betplace Posted November 28, 2003 Share Posted November 28, 2003 Cool , Thanks Greg, hope you feel better soon. Betty Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 28, 2003 Share Posted November 28, 2003 Have you had a MRI of the brain? Is this also not "standard" in SCLC? Seems this would be as urgently/equally pertinent as a bone scan or CT. ------------------------------------------------------------ When I started asking (and demanding, if necessary) for PETs in 1999, they were not then "standard" for NSCLC. I have gotten them every 6 months since diagnosis, and continuing. By pure luck, was also one of the first 50 in the nation to have the combo PET/CT, utilizing the GE scanner that simultaneously gathers/combines both images.That was in the fall of 2000, and this wonderful equipment is still not widely available 3 years later. (That pic of my 3rd metastatic recurrence was what gave the Radiologist confidence my heart could be spared by precisely correct aiming, as well as the courage to proceed. Saved my life!) The insurance companies have balked at times, requiring my Docs to re-submit the charges with their rationales for ordering the various tests/scans. All the charges have eventually been paid by the ins. co., but even if not, we would have "found" the $$$ "somehow". HTH ! Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted November 28, 2003 Share Posted November 28, 2003 I agree with Jim completely. PET/CT is the way to go today and they are more and more available. If all else fails and cash payment is the only option, most facilities will negotiate a significant discount for payment at time of service. Good Luck, Sam Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted November 28, 2003 Share Posted November 28, 2003 I will do my utmost from here out to encourage any and all SCLC patients to request and keep requesting these scans from their Drs. as long as these requests are made at the appropriate times. I dont think there is any one single issue that stirs more emotion in me involving my ilness than this issue of PET scans. lol....... Sam by now is probably getting a chuckle out of me because i have been really harping on this for several weeks. However, i am on a mission to educate all newly diagnosed folks, especially those diagnosed limited stage to have these PET scans done. At the appropriate times ! I dont mean to beat a dead horse so to speak but i know how this issue directly impacted my treatment. I wholeheartedly believe this issue carries enough weight to impact survival rates of SCLC patients. Regards Greg Quote Link to comment Share on other sites More sharing options...
kimd Posted December 1, 2003 Author Share Posted December 1, 2003 Thanks all for the info. I am taking my dad to his next treatment on 12/15 and PET scan questions will be at the top of my list! We don't care if insurance pays or not, seems to be worth the cost. I think he would rather know if there are other areas impacted right now as he is constantly checking for new growth. He seems to have a very knowledgeable onc and they have done two scans of my dad's brain -- I think CT scans. You know they do so many tests at first and you are in such shock, that it's hard to remember, but I know that CT and nuclear bone scans are all that they did. So far, there isn't any cancer in the brain and that has been one of my dad's biggest concerns. You guys don't know how much support you have given me and my family. I know God only gives you what you can handle, but I have an uncle (my Mom's brother) diagnosed last week w/SCLC also. I hope my family has the strength to handle all this! Hope everyone had a blessed Thanksgiving! Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted December 1, 2003 Share Posted December 1, 2003 KimD, I agree that HE will not give us more than we can handle but some days it seems like his idea and ours are wayyyyyyy apart! On those days I just try and remember all the GOOD things that he has given me (starting with THAT day). It helps. God Bless you and I am praying for your family. MO Quote Link to comment Share on other sites More sharing options...
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