HIGH Grade Stage IIIB NSCLC Neuroendocrine Carcinoma in the Lungs

denny621
denny621 Member Posts: 4
edited January 2013 in Lung Cancer #1

Hi everyone and I would like thank you all in advance for any input you guys have. I know we all hate to be on this site but yet again we would all like to be realistic and get as much info as we can.

 

So, my brother (31 yrs ), smoker since 13yrs old had a open surgical biospy done on left side of his neck by collar bone (lymph node). Biospy report came back and the oncologist have found several mass on the right lobe of his lungs and one went from 6.5cm to 7cm in 3 weeks tops. He also said there are fluids that are forming too as well. He did a PET/CT scan on the 1/21 and it showed that it has not spread to other organs. 

The day we met with the oncologist, he wanted to start treatment right away at Beth Israel Cancer Center but we refused to get treatment until we get a 2nd/3rd appt. I was lucky enough to get an appt with Memorial Sloan Kettering for a second opinion on monday 1/28. I also schedule another appt with New York Presbryterian Hospital for a 3rd opinion on tuesday 1/29.

 

Are there anyone on the board was diagnosed with stage 3b? What type of treatments are you receiving? any side effects? anythng we should aware of? I know that i cant go by survival rate because every case is different. I am freaking out bad. I've been running around reports, images, setting up appts, just trying to keep myself busy. Every so often I break down. My parents have some idea of whats going on but we have not told them about the final results of the biospy yet. We left our sister completely in the dark at this point. We didnt want to break the news until we come back from our other appts.

 

Dennis

Comments

  • katenorwood
    katenorwood Member Posts: 1,912
    #2
    Proactive

    Hello,

    I don't have much experience with LC....I'm from the H/N site.  I did have a Vats/Wedge resect done on a spot that they thought was a met.  Came back neg.  But I wanted to tell you I think it wise for the 2nd opinion.....but saying this please don't wait too long to make a decission on where and how to treat.  And I think that it would be wise to let the family in on what is happening.  You sound frustrated, worried and worn down.  Other's to help is a good thing.  I pray your brother finds the answers he's seeking and gets the proper treatments.  I will be keeping you all in my thoughts and prayers.    Katie

  • denny621
    denny621 Member Posts: 4
    #3
    katenorwood said:

    Proactive

    Hello,

    I don't have much experience with LC....I'm from the H/N site.  I did have a Vats/Wedge resect done on a spot that they thought was a met.  Came back neg.  But I wanted to tell you I think it wise for the 2nd opinion.....but saying this please don't wait too long to make a decission on where and how to treat.  And I think that it would be wise to let the family in on what is happening.  You sound frustrated, worried and worn down.  Other's to help is a good thing.  I pray your brother finds the answers he's seeking and gets the proper treatments.  I will be keeping you all in my thoughts and prayers.    Katie

    Is there any possible way the

    Is there any possible way the oncologist read the reports incorrectly? Hopefully, when get a second opinion it comes back as lymphoma considering it can be cured. Maybe something that was over looked? How long are we talking bout with or without treatment? I am trying to be realistics.

     

    Is there anyone on here that is going thru the same phase? Please let me know. thanks

     

    Dennis

  • Ex_Rock_n_Roller
    Ex_Rock_n_Roller Member Posts: 281 Member
    #4
    denny621 said:

    Is there any possible way the

    Is there any possible way the oncologist read the reports incorrectly? Hopefully, when get a second opinion it comes back as lymphoma considering it can be cured. Maybe something that was over looked? How long are we talking bout with or without treatment? I am trying to be realistics.

     

    Is there anyone on here that is going thru the same phase? Please let me know. thanks

     

    Dennis

    I was ...

    IIIB in April 2010, with spread to local lymph nodes. Simultaneous radiation and chemo for two months resulted in NED for over two years. I presented with a recurrence in November 2012, and have been on Xalkori (targeted to ALK mutation) since, with good results. Excellent quality of life.

    Certainly there are side effects to treatment, but nothing I couldn't get through fairly easy.

    Your question is a little bit general, but it's possible to get good results from treatment, and to have them last for years, not months.

  • dennycee
    dennycee Member Posts: 857 Member
    #5
    denny621 said:

    Is there any possible way the

    Is there any possible way the oncologist read the reports incorrectly? Hopefully, when get a second opinion it comes back as lymphoma considering it can be cured. Maybe something that was over looked? How long are we talking bout with or without treatment? I am trying to be realistics.

     

    Is there anyone on here that is going thru the same phase? Please let me know. thanks

     

    Dennis

    Stage four here

    Mine is adenocarcinoma and a later stage.  25 almost 26 months ago I was told 10-15 months with treatment.  I had concurrent chemo and rads. It was extremely fatiguing but I'm here and if we met on the street you would never guess.  There are others who visit this site from time to time who have lived 10 and 20 years with adenocarcinoma and other lung cancers.  They don't check in often because they are out living their lives and check in rarely. 

    That said, that is a small percentage of the survivors and there is no guarantee.  There are new targeted therapies almost annually.  also check the NIH.gov website to learn if there are clinical trials he might be interested in.  

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