MD Anderson - Looking for experiences and feedback getting a second opinion here

blake1979
blake1979 Member Posts: 1
edited March 2014 in Lung Cancer #1
Hello,

My father was diagnosed with Stage 3A NSCLC on April 23, 2010. The tumor he has is located in the right upper lobe. To reach this diagnosis my father endured a CT scan, PET scan, two needle biopsies and a bronchoscopy. Originally, his oncologist said the tumor was inoperable due to the location next to the trachea, but in the past few days the doctors have begun to feel that with preoptive treatment, that surgery may be an option. After meeting with his surgeon yesterday another "hot spot" was discovered in his throat. Apparently, this area of concern was overlooked by an oncologist, radiologist and pulmonologist, only to be noticed by the surgeon, who informed every other doctor of his findings. They all then agreed it was more than likely cancerous cells, thus possibly elevating my fathers status to Stage 3B NSCLC.

To make matters worse, the oncologist and radiologist feel that my father should begin within the next week, a seven week regiment of chemo and radiation only, while the surgeon feels he should undergo five weeks of chemo and radiation, to hopefully be followed by surgery to remove the tumor. However, before any radiation or chemo, the surgeon feels that he needs to perform a procedure where he would scope the left lobe in order to ensure there is room for surgery should they shrink the tumor. This procedure requires a small slit to the throat and seems unnecessary at this point. As you can imagine this is making the entire treatment situation very confusing and making my father more stressed than he already is.

Finally, my mother, my wife and myself are convinced he needs to get a second opinion from a hospital specializing in cancer diagnosis and treatment. We all feel that MD Anderson in Houston, TX is a great option given its unparalled track record. My dad is very uncommittal at this point about getting a second opinion, but with all that has gone on with this diagnosis thus far, I feel it is indicative of the type of treatment the current doctors may prescribe to him. If he is going to go to MD Anderson it needs to happen in the next 5 - 7 days, so I am trying to gather as much info for my father as possible from people that may have experienced similar situations. If you have been to MD Anderson for a second opinion, please share your experience and feedback.

Thanks for your assistance and God Bless!

Blake

Comments

  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #2
    YES to a second opinion at MD Anderson
    Hello Blake,

    My sister is a patient at MD Anderson, but only after a second opinion. When her brain tumors were first found (not at MD Anderson) she was told they were all inoperable. They tried to treat it with drugs but it didn't work and the tumors remained the same. My dad convinced her to get a second opinion at MD Anderson and it was a godsend. MD Anderson has more sophisticated equipment and cutting edge procedures that other hosptials don't always have. The doctor at MD Anderson was able to remove her largest tumor and it was sent for testing. She was diagnosed with and stage 3 brain cancer and has since undergone treatment. Her progress has been dramatic and as of her last 2 MRI's no cancer can be found.

    I'm not saying MD Anderson can cure everyone, no hospital can. But I truly believe his chances will be greatly improved by utilizing MD Anderson. As you already know, it's one of the finest cancer hospitals in the world.

    Good luck and God Bless you as well.
  • wicker_woman
    wicker_woman Member Posts: 19 Member
    #3
    2nd Opinion
    Blake,

    I'm a Stage III-B NSCL Large Cell suvivor. You may want to read my story here on the member search page. Personally, I did not have a very good experience when seeking out another opinion at MD Anderson. I was told "good bye and good luck, nothing they could do for me". I went in search of clinical trial and found Vanderbilt in Nashville, TN to have the most at the time of my dx. I had a totally different experience at Vanderbilt and I'm here today to tell you about it. MD Anderson is one of the finest cancer centers in our nation and they have helped hundreds of thousands of people. I suggest you go where your gut instinct tells you to go for the best treatment. I'm just sharing my journey to survival. I would suggest seeing Dr. David Carbonne, himself a lung cancer surivor. My surgeon, Dr. Mathew Ninan has since moved to Baptist in Memphis. What a skilled surgeon he is and I still call him, my magician. I wish your father the best in his journey to survival and follow your heart to find the best care.
    Wicker
  • Sydneynnm
    Sydneynnm Member Posts: 5
    #4
    wicker_woman said:

    2nd Opinion
    Blake,

    I'm a Stage III-B NSCL Large Cell suvivor. You may want to read my story here on the member search page. Personally, I did not have a very good experience when seeking out another opinion at MD Anderson. I was told "good bye and good luck, nothing they could do for me". I went in search of clinical trial and found Vanderbilt in Nashville, TN to have the most at the time of my dx. I had a totally different experience at Vanderbilt and I'm here today to tell you about it. MD Anderson is one of the finest cancer centers in our nation and they have helped hundreds of thousands of people. I suggest you go where your gut instinct tells you to go for the best treatment. I'm just sharing my journey to survival. I would suggest seeing Dr. David Carbonne, himself a lung cancer surivor. My surgeon, Dr. Mathew Ninan has since moved to Baptist in Memphis. What a skilled surgeon he is and I still call him, my magician. I wish your father the best in his journey to survival and follow your heart to find the best care.
    Wicker

    sydneynnm
    Hi wicker_woman:
    In November 2009 I was diagnosed with adenoma carcinoma, left lung, lower lobe along with brain cancer and liver cancer. I received much the same treatment from the onocologist that you received. I basically told him where he could go and even offered to supply a road map. His exact words to me after he found out he was not going to pump me full of chemo was: "I will prescribe pain killers to you and make you as comfortable as possible until you die". I mouthed off at him I did not know that he had GOD after his name and ONLY God could decide what my future would be. I was sent to MD Anderson in Albuquerque who successfully performed radiation treatment on my brain. It was also recommended to me that I start Tarceva for the other cancers; however, at a cost of $4000 a month, I could not afford that especially since I do not have insurance. Fortunately, I was accepted into the Patient Assistance Foundation by the pharmacuetical company and they are paying for this medication. However, in the meantime, I was sent for a 2nd opinion at the University of New Mexico Onocology Department. These folks were great. Unfortunately, I can not get any further medical assistance with no health insurance and I have been denied Medicaid and/or Medigap. This government IS NOT going to get their way with me to KILL me! Surgery has not been discussed with me. I seem to be doing pretty well on the Tarceva. Hope everyone out there battleing what we are has a positive outcome. GOD BLESS ALL.

    Sydney
  • wicker_woman
    wicker_woman Member Posts: 19 Member
    #5
    Sydneynnm said:

    sydneynnm
    Hi wicker_woman:
    In November 2009 I was diagnosed with adenoma carcinoma, left lung, lower lobe along with brain cancer and liver cancer. I received much the same treatment from the onocologist that you received. I basically told him where he could go and even offered to supply a road map. His exact words to me after he found out he was not going to pump me full of chemo was: "I will prescribe pain killers to you and make you as comfortable as possible until you die". I mouthed off at him I did not know that he had GOD after his name and ONLY God could decide what my future would be. I was sent to MD Anderson in Albuquerque who successfully performed radiation treatment on my brain. It was also recommended to me that I start Tarceva for the other cancers; however, at a cost of $4000 a month, I could not afford that especially since I do not have insurance. Fortunately, I was accepted into the Patient Assistance Foundation by the pharmacuetical company and they are paying for this medication. However, in the meantime, I was sent for a 2nd opinion at the University of New Mexico Onocology Department. These folks were great. Unfortunately, I can not get any further medical assistance with no health insurance and I have been denied Medicaid and/or Medigap. This government IS NOT going to get their way with me to KILL me! Surgery has not been discussed with me. I seem to be doing pretty well on the Tarceva. Hope everyone out there battleing what we are has a positive outcome. GOD BLESS ALL.

    Sydney

    Insurance
    Sydney,

    Call and talk to the people here at CSN concerning your situation with no insurance. Perhaps someone can guide you somewhere for help. I spoke to them here concerning my upcoming issues with insurance and they were extremely helpful. You are right... only God knows our plan.

    Keep Moving Forward,

    Wicker

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