hobored Posted May 9, 2004 Share Posted May 9, 2004 my husbands diagnosis was changed from sclc to nsclc and we did not find out till this Thursday....he has already done all radiation and almost all of chemo....they knew a long time ago...apparently just a slip up. they say it is still best treatment but, I read up on it and it looks like treatment is slightly different with different chemo drugs used. he did 30= 2 times a day radiation treatments. and cispatin and vp 16 1st day and vp 16 next 2 days for three days every 3 weeks. what do you think? Quote Link to comment Share on other sites More sharing options...
MurielK Posted May 9, 2004 Share Posted May 9, 2004 EEK! I wouldn't be happy that I wasn't told of the change right away. I wouldn't trust that doctor anymore. I'd find a new doctor(s). Did they tell you what kind of NSCLC, how large the tumor is, or did they stage it? Let us know what happens next. Muriel K Quote Link to comment Share on other sites More sharing options...
hobored Posted May 9, 2004 Author Share Posted May 9, 2004 well we know it is or was 6 1/2 cm. 25% of right lung not anywhere else . lymphnode in middle of lung and outward. the dr said it was stage 3 ....but that is different too since it is not anywhere else...I guess it is the size that they are staging by. You know we made the choice to go to the "big city" because it is the best. I still feel it is. I hope ...I pray Quote Link to comment Share on other sites More sharing options...
KatieB Posted May 9, 2004 Share Posted May 9, 2004 Karen, the one good thing I see in this slip up is that nsclc generally grows slower than small cell and there are more options when it comes to surgery....BUT, if i were you, I would seek other medical opinions as this "slip-up" is not small but VERY VERY big... It changes alot of things. Although some treatments are for both types of LC, there are MANY other options available out there depending on the specific stage and type of LC your husband has. I would get copies of everything and go some where else for an independant diagnosis/opinion. Just my two cents. Good Luck. Sounds like your husband is faring well and once this is straightened out I pray that he is on his way to renewed health SOON! God Bless you both. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 9, 2004 Share Posted May 9, 2004 Karen, His staging is not just on size. When lymph nodes are involved, staging changes. Stage II for nodes closest to tumor, Stage III when spread to the mediastinum (I STILL can't spell that - geesh!).. My tumor was primarily staged as I or II, but after surgery and lymph node pathology went to IIIa. Sounds like the doctors may have "messed up", but STILL have a plan. The bottom line is you and your husband need to be secure with your team. If you are, keep going! Take care, Becky Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted May 9, 2004 Share Posted May 9, 2004 PLEASE get a second opinion. Treatment does vary between the 2 types. He may need a different chemo to fight this. Get all your reports AND scans and see another oncologist. It will help put your mind at ease. Any Dr can make a mistake but they need to accept the fact they did and make it right. Is your Dr planning a different approach now that they know it is nsclc? Cindy Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 9, 2004 Share Posted May 9, 2004 They knew a long time? How? I thought you could only tell what type from the biopsy. How could they change the biopsy result or did they do another one. Treatment is different for the two types of cancer so I would definitely get a second opinion, especially considering the blankety-blank doctors didn't tell you earlier. The big university cancer centers will usually do a second opinion biopsy - and if your present path lab still has cells, your husband doesn't have to be physically biopsied again. Quote Link to comment Share on other sites More sharing options...
hobored Posted May 9, 2004 Author Share Posted May 9, 2004 we are at md anderson we had done the original bronchoscopy here at home and I brought the slides with me to md anderson and the looked them over and said they thought it was nslc and not oat cell like the original report said. they have probably known a month. the genetic person I was talking to actually told us that the diagnosis was different ..so I called dr and he called me in. we have several dr's working with us...I am not sure what happened. my husband is 48 and never smoked cigarettes and this is his 3rd time with cancer the other 2 were colon cancer...he was diagnoses at 42. He is my love they just have to fix this! thank you so much for getting back to me so fast. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 9, 2004 Share Posted May 9, 2004 Heck, M.D. Anderson is the hospital I was thinking of going to for a second opinion and on my biopsy. I've heard they're extremely busy. It seems all university hospitals have the best doctors & equipment but they are often extremely impersonal. That's very hard on a patient and their family. I personally think their behavior is unforgivable, irresponsible....... I will pray very hard for you and your husband. Quote Link to comment Share on other sites More sharing options...
JoniRobertWilson Posted May 9, 2004 Share Posted May 9, 2004 I guess I would have to say, have them get a 3rd opinion. My husband has SCLC - every new drug and testing done seems to be for NSCLC so it would seem like to me you more options now....I'm no doctor though. Also, one good thing in all of this is they were treating cancer - my husband was treated for heartburn and a thryroid problem before they figured it out! Not complaining about it though - this beast presented itself quite strangely - Good luck. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 9, 2004 Share Posted May 9, 2004 Joni every new drug and testing done seems to be for NSCLC 80% of lung cancer patients have NSCLC so the pharmaceutical companies do the most research & developing new drugs for them. It's the way of the world - kinda hard to take sometimes. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 9, 2004 Share Posted May 9, 2004 Hi, Karen! My wife also was diag. NSCLC. Glad you finally got the right diag. Your husband certainly is a survivor! Keep us posted. Don Quote Link to comment Share on other sites More sharing options...
JoniRobertWilson Posted May 10, 2004 Share Posted May 10, 2004 From my reading it sounds like you're right about why the research goes to NSCLC. Each has it's "pluses and minuses" I suppose. Quote Link to comment Share on other sites More sharing options...
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