Dealing with being told you have 2 yrs left.

davey3
davey3 Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
David Here.
They told me this is what I have and that its a rare Cancer because of where it is located.
I have not started any treatment yet but I do know I am in stage 3 and have 2 yrs to live..
Meeting with all of my Cancer team @ Sloan Kettering next week after I get a Pet Scan.
ANYONE have any suggestions on where to start to learn how to deal with this new Bump in my life.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    Can you give us a little more information
    Hi David

    I am so sorry to hear your comments and perhaps I missed a previous post. Sloan Ketting is world class from what I understand and it seems your still in the initial stages of meeting with your doctors. furthermore almost everyone here has either stage 3 or 4 cancer, its just the nature of this monster. Please elaborate on the rarity and type or location or anything you can tell us, perhaps someone here has dealt with it and I am sorry if I missed a previous post, then just disregard me as a moron. Rick
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    David
    I don't have any words of wisdom to share with you after reading your post. But, I can tell you a little story I know. A dear friend of my wife and I, was told almost the same words years ago. She had Ovarian cancer and the late stage one. Her Doctors told her to go home and take care of all her business as she would be lucky to see 2 years.

    She got this news roughly 4 months after she had retired. She decided to sell her house and move to Florida as she always want to go there. She treated herself good and spent more of her savings then she would normally do. Then something happened, she lived past the Doctors expectations. She had done her Chemo as was recommended which was to try and give her the 2 years. That was almost 8 years ago and she is doing very well today. She is enjoying herself as always. So, my point is, hear what the Doctor's say, but it doesn't always work out the way they say it will.

    I can give you a few more cases of similair situations that I know from extended family members, but I don't want to make this message too long.

    My Best to You and Everyone Here
  • catya88
    catya88 Member Posts: 50
    Someone has to be the exception
    David

    My neighbor was diagnosed 10 years ago with stage 3 ovarian cancer. Told her she only had 1 year to live. It's been 10 years, she said, Cathy, someone has to be te exception. David you will be the exception, believe it.

    In my prayers - Cathy
  • delnative
    delnative Member Posts: 450
    catya88 said:

    Someone has to be the exception
    David

    My neighbor was diagnosed 10 years ago with stage 3 ovarian cancer. Told her she only had 1 year to live. It's been 10 years, she said, Cathy, someone has to be te exception. David you will be the exception, believe it.

    In my prayers - Cathy

    Stage 3?
    Seems kind of odd to be told you have two years left and your cancer is only Stage III. I was Stage III, and some folks here were Stage IV -- and we're still alive and kicking a*s.
    For that matter, I have a friend who was told about 15 years ago, when he was diagnosed with congestive heart failure, that the average life span from date of diagnosis is five years. I think he's outlived the doctor who told him that.
    Don't give up.

    --Jim in Delaware
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    delnative said:

    Stage 3?
    Seems kind of odd to be told you have two years left and your cancer is only Stage III. I was Stage III, and some folks here were Stage IV -- and we're still alive and kicking a*s.
    For that matter, I have a friend who was told about 15 years ago, when he was diagnosed with congestive heart failure, that the average life span from date of diagnosis is five years. I think he's outlived the doctor who told him that.
    Don't give up.

    --Jim in Delaware

    Agreed
    And a second opinion. There's just too much up in the air with that kinda time-frame and the possible effectiveness of treatment (depending on specifics, of course). And do get the Dr's. reasoning for the "2 year" prognosis- might not be the friendliest of info, but it is your life, and you got every right in the world to know why his diagnosis is as it is. And, again, if you don't like what said Dr. tells you- get another's opinion.

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi David

    Because we are all different our bodies will react different to the treatment, sometime better sometime worse a lot depends on our health at the start. Listen to everything the doctors are telling you and don’t be afraid to ask them questions, if you don’t understand ask the doctor to explain it in laymen terms. Also as Kent suggest get a second opinion. Stay posting and let us know how you doing, a lot of us who have been through treatment many years ago stay here to help people just like you.

    Take care my friend
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Stay Positive and Stay Strong
    As many on here have said, stay positive and strong.....

    I would think that giving someone a time frame is based on statistics. But that being said that is a range of numbers. You are a living breathing person and only God truely knows when it will be your time to go.

    Stay strong, stay positive and work for health and life. As long as you are breathing you are alive, so keep breathing. Look at the massive odds that Lance Armstrong has overcome. His philosophy is that even if he is given a 1% chance of survival he will fight for that 1%...never give up.

    God Bless,
    John
  • Scambuster
    Scambuster Member Posts: 973
    Skiffin16 said:

    Stay Positive and Stay Strong
    As many on here have said, stay positive and strong.....

    I would think that giving someone a time frame is based on statistics. But that being said that is a range of numbers. You are a living breathing person and only God truely knows when it will be your time to go.

    Stay strong, stay positive and work for health and life. As long as you are breathing you are alive, so keep breathing. Look at the massive odds that Lance Armstrong has overcome. His philosophy is that even if he is given a 1% chance of survival he will fight for that 1%...never give up.

    God Bless,
    John

    HIt it from all sides
    Hi David,

    Sorry to hear you have this news. While we were all faced with ugly news, I was given a good chance of recovery. Regardless of what the outcome of the Rads and Chemo, I decided to hit it from every which way and I hope you take this approach as there are plenty who have been told what you have been, and they are still here and will be for a long time to come.

    While I trusted the Doctors with the conventional treatment, I also sought advice from 3 Naturopaths who had experience with Cancer. I subscribe to the belief that diet and nutrition play a big role in both succumbing and also to recovering from this disease. If your body's immune system is working well, it will normally deal with cancer cells - because everybody has them. It's just when your immune system doesn't cope and the cancer cells get a grip that we face trouble.

    Along the same lines, there is evidence and many believe, that if the body is 'acidic', this will aid cancer while an 'Alkaline' body should be less prone to be afflicted. Diet is the main contributor to whether you are too acidic or alkaline.

    There is a good post earlier still on the main page called 'Common Sense with Chemo and Rads'. I suggest you read that get in touch with the poster as he has left his address and Telephone contacts. He helped his wife wife beat a supposed terminal diagnosis. Call him.

    I changed my diet drastically, detoxed my system, take a bunch of vitamins and supplements, get acupuncture, have been to 'touch healers' and used homeopathics and other nutritional supplements.

    I believe doing what I have done has helped me - though most of my damage was due to the treatment, not the cancer.

    This post is just to point you in what I regard as a good direction to seek complimentary advice. Your Chemo Doctors will most likely scoff at the idea that diet or supplements could be of any use. I have seen enough in my years to convince me very much otherwise.

    You are no doubt overwhelmed by this ugly situation. I hope you are able to have the hope that you will beat this and do whatever it takes.

    Good luck David and remember it is important for you to believe you will overcome this. Do whatever it takes and start now.

    Scambuster in China
  • Glenna M
    Glenna M Member Posts: 1,576
    Surprised
    I,too,am surprised that a doctor would tell you that you only have 2 years left, especially since it sounds like you still have more tests (Pet Scan) and haven't started any treatment.

    I was diagnosed in May '09 with NSCLC in my left lung and then 2 weeks later was diagnosed with SCC T3 M0 N0(T3 basically means stage 3)and was told that both cancers were both inoperable and incurable. I know my time is limited and so do my doctors but they haven't given me a time frame because it would only be statistics that they were quoting and they have no way of telling me whether I will survive the 5 years ,which is the average expectancy with my types of cancer. What I'm trying to say is, don't give up before you start and don't go by the 2 years the doctors stated. As others have told you, no one reacts the same way to their treatment and you could live another 10, 20 or 30 years. There are no guarantees or time stamps on anyone's life, whether they have cancer or not, we could die from other causes.

    Please stay strong and keep a positive attitude. If you start your fight with the attitude of "I'm going to beat this beast" you will do much better throughout your treatment. Attitude and a sense of humor are magnificent tools to have during your treatment.

    I am also in agreement with others that you should get a second opinion. I'm sorry but I am really bothered that this doctor would give you a prognosis of 2 years, especially if you are a stage 3. I guess I'm a little too opinionated but I don't feel a doctor can tell you how long you have left, not until a person is at the end stages of cancer. Even then they can be wrong, my brother was told he had days left after refusing more treatment and was put into hospice. After 2 weeks in the Hospice House he told them he wanted to go home as he had thing to do and he wasn't ready to die yet. He survived and was quite active for several more months.

    I didn't mean for this to be such a long post but I am just trying to get my point across that you need to get a positive attitude and don't just accept that you have only 2 years just because one doctor told you that.

    I know how scary it is when your first diagnosed and you automatically think your life is over. IT'S NOT!!! We are all here to help you through this with advice, encouragement, experience and a little humor thrown in to make you smile.

    Take care and stay strong.
    Glenna
  • davey3
    davey3 Member Posts: 7
    Hope
    I want to thank you all for your post,it has opened my eyes to see nothing in this world is impossible. H O P E means > Help Open Peoples Eyes. I have to say my eyes are wide open now.

    The location of the cancer is in the Nasopharynx, the location is what makes it rare. Its a small cell Carcinoma which has spread to the Lymph Nodes in the neck which they say is at stage 3..
    As for myself I think 2 yrs will not happen and that I will be here to enjoy my grand children.
    This is my second opinion and I have to say I am really comfortable with this team at Sloan Kettering.
    Now I do have to say that I have been treated for 6 months for a ear and nose infection till I forced my Ear Doc to put me in the hospital to do a scope.
    Now that he found this cancer he calls me on a daily bases asking me how I am doing. My guess is he knows he screwed up. So be it.
    I want to thank you all again for being here and I know we will be talking on a daily bases for more than two years.

    David From NYC
  • sportsman
    sportsman Member Posts: 97
    Dealing with being told you have two years to live
    Davey3: I was in stage IV throat cancer when I was diagnosed. I was told without treatment that I would live 2-6 months. After 7 weeks radiation and chemo once a week for these seven weeks, I was pronounced cancer free. I am just now over the three year mark. I had a strong faith in God that I would beat this thing. God controls when we are born and when we die, not doctors. Certainly we need doctors, however they get their abilities from God and God also supplies medicines for us. Nothing is impossible with God. I pray that you can receive treatment and overcome this horrible diagnosis. May God Bless you,
  • donna Hoyem
    donna Hoyem Member Posts: 5
    What did they tell you you have and where is it located:
    I had head and neck cancer diagnosed june'o9 and I don't have a death sentence. Mine was stage 4 and by the grace of God it is all gone. The pet scan was "complete" which means all gone. Don't let anyone give you a death sentence that's not their right. You just keep believing God's word that "by his stripes, you are healed". Don't forget to pray and thank God for your healing, He likes that.
  • Hondo
    Hondo Member Posts: 6,636 Member
    davey3 said:

    Hope
    I want to thank you all for your post,it has opened my eyes to see nothing in this world is impossible. H O P E means > Help Open Peoples Eyes. I have to say my eyes are wide open now.

    The location of the cancer is in the Nasopharynx, the location is what makes it rare. Its a small cell Carcinoma which has spread to the Lymph Nodes in the neck which they say is at stage 3..
    As for myself I think 2 yrs will not happen and that I will be here to enjoy my grand children.
    This is my second opinion and I have to say I am really comfortable with this team at Sloan Kettering.
    Now I do have to say that I have been treated for 6 months for a ear and nose infection till I forced my Ear Doc to put me in the hospital to do a scope.
    Now that he found this cancer he calls me on a daily bases asking me how I am doing. My guess is he knows he screwed up. So be it.
    I want to thank you all again for being here and I know we will be talking on a daily bases for more than two years.

    David From NYC

    David it is called NPC
    It is better know as NPC and there are a lot of us here who have it, HAWVET is the longest living survivor at 13 years, and I am just about 6 years passed the last treatment and Kent is at 18 months.

    Its not as rare as they think, if your doctor is only giving you 2 years please get another opinion now before you do anything, NPC is quite curable and not all doctors understand it.

    There is a post here called “Calling all NPC Starters & Survivors” here you will find a lot of other just like you and we have all lived through NPC. Our job now is to help others like you become survivors.

    If you need to talk my e-mail address is on my post click on Hondo and it will direct you to the page, send me your phone number.

    God bless and keep you my friend you have many more good years ahead
    Hondo
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    What did they tell you you have and where is it located:
    I had head and neck cancer diagnosed june'o9 and I don't have a death sentence. Mine was stage 4 and by the grace of God it is all gone. The pet scan was "complete" which means all gone. Don't let anyone give you a death sentence that's not their right. You just keep believing God's word that "by his stripes, you are healed". Don't forget to pray and thank God for your healing, He likes that.

    NPC and Survival
    David- kinda hard to figure why your Dr. said 2 years with NPC, and before the Pet results. My problem first showed with two large tumors that developed on the left-side of my neck. Took about 2 1/2-months before they actually began the treatment, and neither tumor was surgically removed- Chemo and Rad were used to destroy the tumors, and C that might have existed elsewhere. The Pet is used to find where C exists in the body, and you don't have your results, yet. So, it's not likely your Dr. has a real good idea on how many places you have the C, and if it really is Nasopharyngeal: can't see why he would tell you 2 years. Heck, you haven't even started treatment, yet- so how can your Dr. know how much C might exist in your body after C & R treatment?

    Thus, if I were you- I would ask the Dr. EXACTLY what in the heck he/she means by the 2 years. And, advise said Dr. that you are aware of a number of people who have undergone treatment and survived the NPC. I had two 96-hour infusions of Cisplatin and FU5, along with 31 full head and neck Rads, concluding with 3 partial-Rads. My ENT, who has ties with the U of Iowa, believes there's an excellent chance of a longtime survival of NPC with my treatment. And we are all proof that one can survive- we have.


    Again, as Hondo advised- check-out the Calling all NPC Survivors thread in this forum. And, welcome to our family, David.

    Believe

    kcass