Father Diagnosed with Stage III or IV NSCLC

2 weeks ago, my dad (69 years old) was diagnosed with Stage III or Stage IV NSCLC at St. Vincent's Hospital in Cleveland. I live in Baltimore, but drove into town to talk with the doctors & my mother and try to understand / figure things out. I'm still at a loss for exactly where things are headed, although my dad has started treatment (IV Chemo of Alimpta, Avastin & carboplatinum 1x per 3 weeks).

Here's a few of my concerns:
1. The doctor says it's Stage III or Stage IV and has spread to the lymph. (I would think they could be a little less vague).

2. The doctor says that a PET scan isn't required, because the treatment wouldn't change, regardless, because of the S3 or S4 NSCLC. (Again, not sure why we wouldn't try and figure out where else it has spread).

3. Prior to a biopsy 2 weeks ago, he had 2 bronchoscopies (1 about a year ago, a 2nd about 4 months ago) in which both were ruled benign. (He smoked for 30 yrs (hasn't in 20) and has worked in the construction field all his life. I would think these would push a biopsy or other test forward?)

4. He was admitted to the hospital because of shortness of breath (they ended up draining 1600cc of fluid from his chest cavity).

5. I haven't been able to really get a clear cut answer from the Doctors on where it currently is, or how it is affecting my dad.

6. HOWEVER, despite it all, the Doctor has a feeling that my dad is going to pull through this. (I have no idea how he comes up with that, but I'm hoping for the best).

I guess I'm just writing this to see what other people are going through and how I can figure out what the next step would be. The engineer in me needs to understand the processes and cause/effect of the whole situation and I'm just not grasping it at this poitn.

My initial thought is to contact the Cleveland Clinic and see what I can find out from them and try and schedule a 2nd opinion and look into alternative treatments? If anyone has any insight, I would greatly appreciate it.

Thank you for your help.

By kq182
Posted May 10, 2009 at 1:07 pm
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Hi, I think you are right that you need more info on what exactly your Dad's stage is.
My husband who is 43 was diagnosed with IV stage NSCLC in Jan this year, he did have a CT scan of his brain which showed mets there which ended up staging him to IV. Our onc and my husband wanted a PET scan, which pretty much shows if cancer is lighting up anywhere else in the body, luckily his just showed a little activity in his other lung, but a PET does not include the brain. So if I were you and your Dad I would want further tests to know what I was up against, true it does not change the treatment, but when further scans are done in the future you have a comparision. Since radiation my husbands main tumor has shrunk by about 50 percent, he is now having chemo, May 21 he has CT scans of his head, chest and abdomen, I pray all is well, and that these treatments he has had have helped. Good luck, ask for more tests, if this onc says no, find another one. You have the right to know. Please update, I wish you all the best, and you are in my prayers, Karen

By cjtripp55
Posted May 11, 2009 at 8:24 am
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Thanks for the update Karen. I'm glad to hear that your husband is doing well! I talked to my mom last night about things and am working on a plan moving forward.

Can I ask you what sort of chemo your husband is having? My dad is on Alimta & Carbopalatin once every 3 weeks. He's only had one infusion, so I really don't know how long until we should see some results. He hasn't had many side effects, except he is really tired (so much so that he had to go back into the hospital yesterday because he couldn't make it down from the bedroom).

He's had fluid build up in his chest cavity (both before the diagnosis and as early as this past week).

I've read some posts in here that say Alimta is the wonder drug and I really hope that's the case, but hearing how he's responded to the first treatment makes me worry even more.

Any help you can offer would be appreciated. Also, if you'd prefer to talk outside of a discussion board, you can always email me at cjtripp55@comcast.net as an alternative.

Thanks! And you and your husband are definitely in my prayers.

By Blondie3792
Posted May 11, 2009 at 8:56 am
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I dont know if I can help but I am going through the exact same thing with my father ( 65yrs old ). He started with a routine xray that I insisted upon and a small nodule was detected. He then had blood work, ct scan and then a Pet scan. They said it was 1 cm in diameter. This all started the middle of Jan, 2009. I have been to every doc. appt. with him. The ct and Pet didnt show as much at should of.His pulmonologist said he had to see a surgeon- which resulted in upper right removal of his lobe. He went in at stage IA and came out with stage IIA- invasive poorly differentiated adenocarcinoma.The mass was 3cm in diameter and lymph node (2cm)was involved.The surgery was suppose to be 3 hours and took 10 1/2 hours long.We then went to an oncologist and he was restaged at Stage III maybe Stage IV. This was after a brain scan, muga scan, pet/ct scan ( which is better than a ct or pet alone). It seems that the tests came back clean ( maybe) but the Pet/ct showed great uptake of 16.9 FDG in his mediastinum( a precarnial lymph node).The size of 2.5cm x 3cm.He has started chemo and radiation- Cisplatin and etoposide(days1-8 & days 29-36) along with 61gys of rad everyday for 28 days straight. He is starting to feel the effects of the treatments and the mood swings are horrible. He also already had to have a shot to boost his WBC. It is very important to research the internet and talk to all kinds of doctors. I even had my dad go to a urologist.Make sure you get every report and test results in writing. I keep a file because all of the different doctors that we have seen. I pray everyday and am constantly looking online for more info. I am scared and not sure of anything except we have not gotten a definitive prognosis.Im not sure if this is curative treatment now. I will keep you and your dad in my prayers and thoughts and good luck- Dont give up, keep asking questions.

By ANDIQUES
Posted May 12, 2009 at 10:17 am
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I really feel for you guys ... I think the "not knowing" may be the worst part of this nightmarish roller coaster ride and you definitely need to have doctors you feel confidence in. Sounds like you're not getting the answers you need and I would definitely look for a second opinion/doctor who can be more definitive. I would also suggest to yu both that you join the Lung Cancer Alliance community if you haven't already ... they have been a tremendous source of information and support for me and I think it could help you a great deal... moreso than general internet information which paints a pretty dismal pictures as far as stats go. Good luck to you cjtripp and Blondie!

By Lindakaylkw101
Posted May 13, 2009 at 9:32 am
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Push, be active in your dad's diagnosis, we are the only advocates for our family and ourselves, I pushed myself all the way and am still going, every other month I get my CEA, Hemoglobin , etc. done,if anyone says anything insurance, doctors jokingly, I say CANCER SURVIVOR, NOT HYPOCONDRIAC.

Right on, move forward and make his recovery #1, I am a stage 3 colon cancer survivor, almost 2 years and am staying that way.

Keep in touch and keep the faith.

Luv and Hugs
Linda

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