27 y.o. Stage IV Lung. New Diagnosis.

spicysashimi
spicysashimi Member Posts: 9
edited March 2014 in Young Cancer Survivors #1
About a month ago, I went to the hospital for chest pain. On the x-ray, the doc noticed a nodule. CT scan confirmed and showed some baby nodules. After a fine needle aspiriation at one hospital, they diagnosed it as neuroendocrine carcinoma (a rare aggressive cancer). I went to MSK for a second opinion. They did a core biopsy. Pathologists are "100%" certain its NSCLC. Pet scan shows bone metasteses to back and hip. I was generally asymptomatic before I went to the ER (moving heavy stuff, exercising, etc.).

I got carbo and etoposide when they thought it was neuroendocrine. Now it will likely be carbo, taxol and avastin. Interestingly, and maybe someone else has experienced the same, I had almost no bone pain prior to chemo. My back was a littly annoying, but I chalked it up to a bad nights sleep. Two days after my chemo stopped, my back pain went from 1 to 9. It was throbbing and borderline debilitating. Now two weeks post-chemo, the back pain has subsided mostly, but my chest (site of big tumor) and hip (hip, especially) are up to 8/9. I had NO pain in my hip prior to chemo. Now I limp, even on oxycontin.

I'd like to think that this is the cancer cells reacting to the chemo, preferably by cell death. My doc, who's not my favorite said its just cancer pain. I asked how it could go from a 1 to a 9 in a week which happened to be the same week i got the chemo. Then she started saying that the pain has been there all along and now I am just noticing it. ****. This pain is like YEEEAAAAOOOWWWW. It was not there.

Anyway, just like everybody else I guess: scared, confused and hopeful. The doctors say that lung cancer in a non-smoking 27 year old is unheard of. But then they make comments about survival. My response is this: if its so unheard of that a non-smoking 27 year old can get lung cancer, then why can't it be possible that I survive this cancer? Why can't the **** odds that worked against me, now work for me?

I am interested in supplements and diet, but my doc is dismissive. I've been reading some good books. I'd love to talk to some of you if its ok. Keep fighting and keep believing.

Comments

  • DIVA
    DIVA Member Posts: 38
    #2
    I am a 24 year old lung cancer survivor. I had NSCLC- andocarcinoma. I did not have chemo. I had no "symptoms" but what are symptoms to the doctors when it comes to Lung Cancer are based upon the general age of getting it which is over 40 those I have met with my cancer at my age had same odd symptoms that made doctors think it was a kidney problem but that was for my type. If you dont like your doctors get new ones ASAP. Till you find the ones you like. And lung cancer in a non smoking 27 year old is not unheard of it only is to your doctor because they havent sceen it. There are studies about the rise of Lung cancer in those in their 20's my doctor just found a 22 year old female. They had an 18 year old male in another state when I was diagnosed at 21. We are out there unfortunatly. If you would like to talk more email me on the site. I had nerve damange after my surgery because they positioned my epidoral wrong was told the damange would only heal to 85% that would be the best I would get if I was LUCKY. I got it to 98%. The doctor who is one of the best neurosurgeons in the country had told me it would be 85% he apparently had never been wrong. When I laughed in his face and told him I would make sure he was wrong. He had said he never has or will be wrong. He was without a doubt wrong. I was glad I had my neurologist who told me if I know I can do it then make it happen. Cancer is a very mental disease along with what comes after it. If YOU believe what the doctors are doing is helping then believe. If you dont then there are tests to see if they are. Like follow up scans. Remember this is your life and not your doctors so if you want another doctor then fire your current ones. I went threw a few doctors like the neurosurgen who I laughed at. I could accept the 85% but I wasnt going to settle for it. If I wanted better then I had to do it myself and fight for it.

    My doctors recomended a diet with more fuits and veggies. I am somewhat overweight now. So for a real diet they would rather see me on something more like south beach that incorporates those fruits and veggies. because they believe that fruits and veggies are cancer perventative. I do believe they may help keep one healthier its logical I guess.

    I hope to hear from you soon
  • levensweg
    levensweg Member Posts: 55
    #3
    I am a 34 year old stage four colon cancer survivor. I'm sorry I don't know much about the chemo you are taking nor do I have any personal experience with bone mets, although I did take avastin with minimal side effects. Still, I had a rough journey and they took a lot of stuff out of me and I am disease free. I finished chemo one year ago.

    Everyone is different. You are not a 75 year old with added complications. Doctors only know so much. I had all sorts of unexplainable pains that came and went. Never had a good answer. Keep asking questions. Stay positive. My onc only cares about wether or not I have cancer. Nutrition, support groups and alternative therapies I had to do on my own. There's a lot of info and my family and friends and this website were all invaluble.

    stay strong,

    leven

    I highly recommend these sites:
    blochcancer.org
    planetcancer.org
  • StarXed59
    StarXed59 Member Posts: 9
    #4
    Hi, I'm Shauna. I'm sorry to hear of your diagnosis. I also have stage 4 NSCLC. I was 24 when I was diagnosed, and I am 28 now. I've just recently run out of treatment options, and due to nerve damage from a tumor pressing on my spine, I'm barely able to walk on my own, so I am in respite care in the hospital because I have no one to be at home with me while my parents are working. You must be so shocked, I am so sorry you have to endure this, too. I completely understand. When I was diagnosed, I was already stage 4 with mets to my liver and sacrum (lower back or tailbone near the spine?)Odd place. I had even gone to my doctor for 2 years prior complaining of symptoms and my doctor turned me away saying it was all in my head, that I was overweight and needed to exercise. I can't even describe how angry I was when she told me the diagnosis, and I don't even think she felt she was any bit responsible for leading it spread all that time. Usually by the time you have symptoms, the cancer is late- stage. Well I'm glad you found this site. I've met some really amazing people here. Let us know if you've started treatment, which you probably have since you posted in Sept. I just finally got a laptop so I can finally get back to the online support. I call it my window to the world. Take care, Shauna
  • kesnh
    kesnh Member Posts: 9
    #5
    I am 30 and activiely surviving carcinoid cancer in the lung... (rare agressive) I had to fight to get my surgery because no one wanted to bother withthe biopsy or with surgery because I was a 29 year old non smoking women!! I surley didn't have lung cancer!! Boy I hated being right on that one! They found my tumor accidently. I had no symptoms of any kind of a problem in my lungs. I was driving one afternoon last summer and suddenly couldn;t speak!!! When I got to the ER my nurse misread the DR. orders and had a chest x-ray instead of a neuro test. A day or two later I got THE phone call. An area of abnormal density is what they said. As soon as I got that call the speach problem went away!!! ( someone was watching my back)

    My advice is to find a doctor you LOVE.. We aren't talking about a flu Your life is resting in their hands you have trust them and if you don't there is probably a reason. Doctors might know bodies better than you do but No one knows your body better than you do.... Ask one of the nurses at the treatment facility if there is a nutritionist available. I had huge success by knowing what I needed to be eating. I also recomend Reiki . It really helped me. In fact it is what allowed me to be able to receive treatment of any type.

    The pain sucks I wish I had a brillant solution but heat and hydration are pretty much all I've got. I had to increase my calcium intake dramatically.

    Stay strong and remember that that the odds are just numbers. You are stronger than numbers.....
    I never thought being bad at math would work to my advantage but here I am 30!!! I am doing really well and the side effects are slipping away. So are the memories of the days the side effects seem to win.
    My other best adice is TIVO I swear that Grey's Anatomy saved my life. Any night that can include Dr. McDreamy is a good night.

    Blessings,
    Kathy
  • sunprairietina
    sunprairietina Member Posts: 3
    #6
    Wow, what is causing this lung cancer in young non-smoking women (and men,too)? Radon, hairspray, birth control pills, cleaning supplies? It is so baffling. I'm 35, a one-year survivor on Tarceva. Stay strong all of you survivors, young an old, we can beat it.
  • carcinoidlady
    carcinoidlady Member Posts: 5
    #7
    kesnh said:

    I am 30 and activiely surviving carcinoid cancer in the lung... (rare agressive) I had to fight to get my surgery because no one wanted to bother withthe biopsy or with surgery because I was a 29 year old non smoking women!! I surley didn't have lung cancer!! Boy I hated being right on that one! They found my tumor accidently. I had no symptoms of any kind of a problem in my lungs. I was driving one afternoon last summer and suddenly couldn;t speak!!! When I got to the ER my nurse misread the DR. orders and had a chest x-ray instead of a neuro test. A day or two later I got THE phone call. An area of abnormal density is what they said. As soon as I got that call the speach problem went away!!! ( someone was watching my back)

    My advice is to find a doctor you LOVE.. We aren't talking about a flu Your life is resting in their hands you have trust them and if you don't there is probably a reason. Doctors might know bodies better than you do but No one knows your body better than you do.... Ask one of the nurses at the treatment facility if there is a nutritionist available. I had huge success by knowing what I needed to be eating. I also recomend Reiki . It really helped me. In fact it is what allowed me to be able to receive treatment of any type.

    The pain sucks I wish I had a brillant solution but heat and hydration are pretty much all I've got. I had to increase my calcium intake dramatically.

    Stay strong and remember that that the odds are just numbers. You are stronger than numbers.....
    I never thought being bad at math would work to my advantage but here I am 30!!! I am doing really well and the side effects are slipping away. So are the memories of the days the side effects seem to win.
    My other best adice is TIVO I swear that Grey's Anatomy saved my life. Any night that can include Dr. McDreamy is a good night.

    Blessings,
    Kathy

    Hi Kathy,

    Bronchial carcinoid (lung carcinoid) is a main feature of the 2007 North American Carcinoid - Neuroendocrine Conference for Patients and Physicians in Norfolk, Virginia this September.

    This is actually the first year the annual conference will feature not only a special day for lungnoids, but also a special day for those who are newly diagnosed. Additionally there is the traditional 'pathway' lectures series one day.

    The entire conference is 2 and a half days and begin on Thursday, September 27. All the United State specialists, specialists from Canada, the Netherlands, Switzerland, and Sweden will be present to provide the most up to date information on treatment options as well as how to live with what this type of rare cancer does to our bodies.

    The complete schedule is on the conference web site found at www.carcinoidnetconference.org

    Registration for the conference is on the web site as well as information on the hotel and the ability to register for the hotel.

    For a lungnoid, this would be a great opportunity to meet other lungnoids and share information from them first hand.
  • nene05
    nene05 Member Posts: 10
    #8
    Hello! I do not have lung
    Hello! I do not have lung cancer, but we do have a couple things in common. I have a germ cell tumor/tumor's in my abdomen. I also am on taxotere and carboplatin. I do have back pain also. Not as bad as you but I also have to take lortab for the pain. Now I am on my 4th round of the chemo (last one). Are they giving you the Lunesta shot? I was fine the first round of chemo. Than these last two times I had to have the shot to boost my blood cell count and let me tell you I couldn't get out of bed for over a week! I felt like someone ran me over with a bus! I just starting to get back to normal and I have to go back for chemo an Thursday! How refreshing! I also went to MSK. I live in Upstate New York and receive chemo up here but I dont do anything until my doctor down there sees me. I also dont care for my oncologist up here. Its been a really rough road, and Its not over yet but I will beat this and so will you! God never gives you more than you can handle! Stay strong and good luck!
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator

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