I need help

space Member Posts: 1
edited March 2014 in Lung Cancer #1

My name is Karen. After her surgery to remove growing cysts on her lung my mom was told she had a rare form of cancer and 2/3rds of her lungs an part of her lymph nodes were removed. They tell us they got it in time and they removed it all. The doctors say it didn't spread, thank God. But her doctor is the type who believes he never makes a mistake. He just sent her home (about a week ago) after the surgery with no future plans of chemo or any preventative measures. We are not comfortable with her just being sent home with the attitude "we got it all". Others including nurses say my mom should be getting follow up care in the form of chemo or radiation. I don't know how to go about to find the best oncologists. We want my mom to go to the best oncologist around to verify the cancer is gone. I hope you can help me. I am not experienced with the internet other than email. Is there phone numbers I can call or specific steps I need to take to find who to go to as soon as possible. Because this is the first time our family is dealing with cancer if you can help me I would truly appreciate it.



  • bobz1
    bobz1 Member Posts: 50
    I am a 10 year lung cancer survivor.I had 2 surgerys.15 days in the hospital each time.after my last I made sure I got another round of Chemo.I dont know where you live,so I cant tell you where o go unless you live in FLA.I went to a teaching hospital to have my operations.They told me the same thing,that they got it all.When I got home I asked my Doctor,If it were you would you go threw all the sickness of the chemo.He said yes,so I took a second round of it.You need to see another Doctor,or TELL the one you got you want more.If he cant or wont give more find another Docter.If I con help any more let me know////Bob Z
  • gelc
    gelc Member Posts: 29
    I had a lower left lobectomy a year ago and had no further treatment, since the lymph nodes were not involved.
    However, trust in your doctor is crucial. When I had questions I called the
    1-800-4-CANCER number, and was impressed with the amount of knowledge they had. They answered every one of my questions.

    I also recently found this website:
    It may help also. Good luck and God Bless. One day at a time.

  • pam51
    pam51 Member Posts: 9
    Hi Karen
    Sorry about your mom. If I were you, but I am not, I would ask any and all friends/acquaintances for names of oncologists who they have dealt with and are pleased with their care. What you need is to get a second opinion from the most highly recommended from those people and then go for it. There is such a thing as "things happen for a reason" meaning your second opinion will be of great help by either agreeing with the initial treatment of your mom or a more aggressive follow-up treatment.
    Good luck and let me know how it turns out.
    I have been lucky to have a team of doctors who continue to evaluate my lung cancer and treat it accordingly.
    pam51 - e-mail pabuchh@mcleodusa.net
  • nutt
    nutt Member Posts: 140
    Karen, as a suggestion to aviod further delays for your mom --- many people's insurances require they get a "referral" from their family doctor. Check it out with your mothers family doctor first as to who they will cover, then, if not happy with that doctors opinion/service you can push for another specialist if you feel this one is not up to speed. My best advise is not to take no for an answer.
    good luck and god bless.
  • pauld
    pauld Member Posts: 1

    I am a 58 year old male, lung cancer (non small cell) diagnosed in the summer of 2000. Had radiation prior to the operation, 6 treatments. Oct 17th of 2000 had the operation and had 1/3 of my left lung removed. As is normal, during the operation there were numerous biopsies of various portions that were removed. All of them were dead cancer cells, no live cell was ever found.

    Here is what is interesting. You may have heard of cases where the operation was a success but some time after, there appeared cancer in other parts of the body. It was thought that cancer cells got free during the surgery, and started growing in other parts of the body. It now appears that the cancer cells may have been there all along. The "parent" cancer tumor excretes chemicals that "stunt" or inhibit the growth of other cancer tumors. When the "parent" tumor is removed, it allows the other cancer cells to now grow.

    For myself, even with the excellent prognosis, and the successful operation. I was insistant that I have chemo. Six months of chemo, lost my hair in the winter (my only complaint). Went back to work January 3rd of 2001. So far 4 cat scans later, no sign of any problems.

    I still get nervous waiting for the results of the cat scan, and will probably continue to in the future. Talk with the doctor, the issue is not the success of the surgery, it is the success of the mental wellness that is an issue also. I cannot believe that the doctor, as good as he is, will not understand that you want the belt and suspenders approach. Don't stop, don't take no for an answer, but .. and I must state, you talk about your or "we" feel what your mom. Please, make sure it is what she wants as well. Mental attitude is just as important as the physical healing.

    I hope I have not bored you with this, I get to run on at times.

    Take care
    All the best to you and your family

  • hunter
    hunter Member Posts: 10
    Hi Karen,
  • hunter
    hunter Member Posts: 10
    Hi Karen,
    I was diagnosed with non-small cell cancer in my right lung in 1995. They removed my upper lobe and said they got it all. I was fine until 1998 when it spread to my lymph nodes around my neck. They did radiation and I was fine for another year. It then spread to the lymph nodes under my arm. They started giving me chemo with cisplatin and vinblastine. They kept giving me radiation and chemo. I was not suppose to live till the Christmas of 2001. I had my last chemo in September of 2001. I have been clear ever since. I'm just not ready to go yet. I just keep fighting and not believing it is my time.
    Tell your mom to watch for lumps anywhere. Report them to her oncologist immediately. Even if they are very small. The sooner they find them the sooner they can do something about them. How old is your mother? How long do they think she had the cancer before it was found? I'm living proof that all you have to do is keep on fighting and believing you can beat it. So far so good!
    Debbie Lung cancer survivor