My 22-Year-Old Son Has Just been Diagnosed with Stage 4 Colon Cancer

cindy5
cindy5 Member Posts: 5
edited March 2014 in Colorectal Cancer #1
Our lives have been turned upside down, as I'm sure all of you on this board understand...
In early October, my son, David, had a colonoscopy because of abdominal pains and some bleeding. The GI thought it was IBS, or at the worst, Crohn's Disease. WRONG. The cancer has metastasized -- three small lesions on his liver and one on each adrenal gland. The oncologist was quite blunt. He told my son that the cancer could not be cured, that it would be a battle, but that ultimately it was a battle he would lose. We were all numb (and in mourning) for a few days. My son would barely get out of bed. Now, I am MAD and ready to fight. How dare this doctor take away my son's hope?! Needless to say, we are going to "fire" him and get a new doctor. It took two weeks of positive people and lots of prayers to convince my son that he has a fighting chance. He has had his first week of chemo (four drugs at the infusion center, followed by 48 hours on a pump. We are now in the process of getting David into MD Anderson. We live in Austin, so the drive to Houston is not bad. I would like to hear from Stage 4 patients -- does anyone beat this disease? What types of treatment have you had? Thanks in advance for any insight and support you can provide.
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Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Cindy , always sad to welcome people but 22 years is just
    a bi....t...ch ! ( hope is a correct word, sorry but I'm from Barcelona). In the positive side you will not need two weeks to be convinced that there is a big chance ,just see the testimonials of the people here, so many here whose dx is stage lV and get cancer free since many years, just tell him to be prepared for a rough fight that can be won with the help of attitude , doctors and God.
    Just a big hug for the whole family!.
    And remember attitude,attitude and attitude!
  • dmdwins
    dmdwins Member Posts: 454 Member
    pepebcn said:

    Cindy , always sad to welcome people but 22 years is just
    a bi....t...ch ! ( hope is a correct word, sorry but I'm from Barcelona). In the positive side you will not need two weeks to be convinced that there is a big chance ,just see the testimonials of the people here, so many here whose dx is stage lV and get cancer free since many years, just tell him to be prepared for a rough fight that can be won with the help of attitude , doctors and God.
    Just a big hug for the whole family!.
    And remember attitude,attitude and attitude!

    As a matter of fact
    Cindy,
    As a matter of fact I just returned from my 3 year scan after being diagnosed with Stage 4 colon cancer in October of 2007. I am currently NED (no evidence of disease) and doing great!!!! Please tell your son NOT to give up hope....I am soooo mad at the doctor that took that away from him. Now lets get him in the fighting mode. I believe his age will actually help him be better equipped to fight this darn disease. You are doing the right thing by going to MD Anderson for another opinion...they have a great reputation and it is nice that they are close to your home. There are many others on here that are Stage 4 and survivng and living well. I am sure you will be hearing from them too. Please come here for support and question...your son too...

    Smiles,
    Dawn
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Cindy5
    Welcome, you have come to a good place. I am so sorry to here of your son's diagnosis. There are many stage 4 survivors here. Some have been without evidence of disease for a long time, + some are still in the battle. My doctor told me "I don't have a crystal ball". Some are able to get rid of it + for others it is more like a chronic disease. I know two stage IV survivors who are 15+ and 22+ years from their diagnosis. It is good you are mad + ready to fight. Please tell your son we are cheering for him. Good luck at MD Anderson.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear cindy5
    I am glad you are here, but sorry for the reason which brought you here.

    Glad you are moving on to another doctor, and hope you find one more encouraging.

    There are lots of stage 4 cancer survivors on this board who will be able to help you with specific treatment questions. The rest of us will be around to offer our support whether you are mad, sad, happy or just need someone to listen about your day.

    In my opinion, every day that we wake up and move forward is a day we beat this disease. Do we ever wonder if it will get worse or come back as a recurrance? Sure we do, because there are no guarantees.

    Please suggest to your son that he also join the board here. These folks are great about sharing all they know and in giving the support that only one cancer survivor can give another. Not the type of club any of us wanted to join, but definately helps us through the tough spots of fighting.

    Take care and keep the fighting attitude!

    Marie who loves kitties
  • pepebcn
    pepebcn Member Posts: 6,331 Member

    Dear cindy5
    I am glad you are here, but sorry for the reason which brought you here.

    Glad you are moving on to another doctor, and hope you find one more encouraging.

    There are lots of stage 4 cancer survivors on this board who will be able to help you with specific treatment questions. The rest of us will be around to offer our support whether you are mad, sad, happy or just need someone to listen about your day.

    In my opinion, every day that we wake up and move forward is a day we beat this disease. Do we ever wonder if it will get worse or come back as a recurrance? Sure we do, because there are no guarantees.

    Please suggest to your son that he also join the board here. These folks are great about sharing all they know and in giving the support that only one cancer survivor can give another. Not the type of club any of us wanted to join, but definately helps us through the tough spots of fighting.

    Take care and keep the fighting attitude!

    Marie who loves kitties

    FOLFOX ( oxaly mainly ) is the most common drug for Stage IV
    probably is the one he is having right now .Is a very rough drug but works!.Folfiri is also a well known and successful drug in combination with some monoclonal antibody. you see you got different choices to beat the beast ,be sure one of these will work!
    Hugs.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Cindy
    First, I am so sorry to hear this. I do want to welcome you to the board. There are many here with a lot of love and experience to share.

    I can't imagine how you must feel with what the doctor said to you. That is just a shame. Yes, people beat this disease. The American Cancer Society just opened a long term survivors board here especially for those people and a lot of them were orignally new comers on this very board. I won't lie to you, stage IV is definitely a very serious diagnosis. But, I think that you'll get a much different response from MD Anderson than you got from your first doctor. Some of the long term survivors are living with this cancer as a "chronic" disease and some have had very good results. Of course, we lose people to this disease also. But, you are early in your journey still and getting that 2nd opinion is very important.

    Please check out WhatsA_Mom2do posts and information. Here is a link to her member page: http://csn.cancer.org/user/130361
    Her son will soon be 20 years old with stage IV colon cancer,also. I'm sure she would love to chat with you as she has a heart of gold. You are not alone.

    I will pray for you, your son and your whole family that you find the strength that you need at this time.
  • hawk711
    hawk711 Member Posts: 566
    pepebcn said:

    FOLFOX ( oxaly mainly ) is the most common drug for Stage IV
    probably is the one he is having right now .Is a very rough drug but works!.Folfiri is also a well known and successful drug in combination with some monoclonal antibody. you see you got different choices to beat the beast ,be sure one of these will work!
    Hugs.

    Brother is a survivor
    Cindy
    My brother had his colon removed with ileostomy in 1998. He just retired and is enjoying life to the fullest. He had Chemo and Rad and felt like crap for a year or more, but with a few side effects, he is a happy and thankful man.
    Tell your son to go on this website and talk to the wonderful people here. If necessary, get him talking to another who can counsel him, either a patient or a counselor. Your son must have hope and go forward with a positive "I can beat this attitude"
    We are all pulling for you and him....
    All the best,
    Steve
  • braelee2
    braelee2 Member Posts: 130
    So Sorry
    I am so sorry to hear this. He is so young to be going through this. Heck my doctor was shocked when he first met me. (Im 37 stage 3 colon cancer) He will be in my Prayers. Tell him to stay postive and fight this he can do it . It will be a rough road for all of you but stay strong and god will see you through this.
  • Crow71
    Crow71 Member Posts: 679 Member
    Hey there,
    I'm stage iv. 38

    Hey there,
    I'm stage iv. 38 years old. Usually I'm the "poor young guy in the conversation." Not so this time and with WhatsA_Mom2do. This just sucks for all of us.

    People do beat this. There are lots of long term survivors of stage iv on this board. I'm planning to be one, but I ain't there yet.

    I don't know what to tell you about your doctor. I really like my oncologist. He's smart, flexible, pays close attention to my disease and my body. He doesn't try to fit me in to a category or 'own my disease.' He is also the greatest hope sucker I've ever met, and I actually love that about him. He has never let me ground my hope in falsities. He wants me to live well. It use to freak me out when he talked about "quality of life." All I heard was, "End of life." After a while I realized that his goal is the same as mine. Go for a cure, fight like hell, and love every minute I can. I also realized that whatever hope - Hope - I have lives in me. He can take his stats and shove 'em up his ****. I pretty much told him that and we had a laugh.

    Sometimes my mom talks to me like I'm already dead. That isn't helpful. So get yourself out of mourning.

    Keep asking questions and sharing your story.

    Stay strong and focussed - Roger
  • geotina
    geotina Member Posts: 2,111 Member
    Cindy:
    I am so sorry for your son's diagnosis. The doctor was wrong to take away your son's hope. Is the doc's name "God". Granted, Stage IV is bad, I won't kid you but it is certainly not hopeless by any means. My hubby was diagnosed Stage IV with lots of liver and lung mets and that was 18 months ago. He continues to work full time and enjoy everything he did before diagnosis. Sure, chemo gets you down, especially fatigue for my George.

    MD Anderson is the #1 facility in the country, second is Sloan in New York.

    Be sure to come back to the board with any and all questions you may have. Don't worry about the terminology, we have all been there and will know what you mean.

    Other sites that are full of information: Colon Club, Colon Cancer Alliance, Colon Cancer Coalition. Sign up, they are free, just like here.

    Take care for now - Tina
  • okthen
    okthen Member Posts: 232
    Crow71 said:

    Hey there,
    I'm stage iv. 38

    Hey there,
    I'm stage iv. 38 years old. Usually I'm the "poor young guy in the conversation." Not so this time and with WhatsA_Mom2do. This just sucks for all of us.

    People do beat this. There are lots of long term survivors of stage iv on this board. I'm planning to be one, but I ain't there yet.

    I don't know what to tell you about your doctor. I really like my oncologist. He's smart, flexible, pays close attention to my disease and my body. He doesn't try to fit me in to a category or 'own my disease.' He is also the greatest hope sucker I've ever met, and I actually love that about him. He has never let me ground my hope in falsities. He wants me to live well. It use to freak me out when he talked about "quality of life." All I heard was, "End of life." After a while I realized that his goal is the same as mine. Go for a cure, fight like hell, and love every minute I can. I also realized that whatever hope - Hope - I have lives in me. He can take his stats and shove 'em up his ****. I pretty much told him that and we had a laugh.

    Sometimes my mom talks to me like I'm already dead. That isn't helpful. So get yourself out of mourning.

    Keep asking questions and sharing your story.

    Stay strong and focussed - Roger

    Hi Cindy,
    Welcome!
    You will

    Hi Cindy,
    Welcome!
    You will find a world of knowledge and compassion here, I know I have. (my husband DX StageIII 6/2/10)
    Sending prayers for you and your son!
    Chriss
  • lizdeli
    lizdeli Member Posts: 569 Member
    okthen said:

    Hi Cindy,
    Welcome!
    You will

    Hi Cindy,
    Welcome!
    You will find a world of knowledge and compassion here, I know I have. (my husband DX StageIII 6/2/10)
    Sending prayers for you and your son!
    Chriss

    Praying for your son
    Cindy,
    I will keep your son in my prayers. Glad to hear you are going to MD Anderson. That was what I was going to recommend. The gastrointestinal team there is great. I had anal cancer but was treated by the same team that treats colon cancer. I met many survivors there coming back for check ups. This board will also be a source of great support. These are some of the strongest people I have ever met (even though we never met in person).

    Fight! God bless.
    Liz
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    okthen said:

    Hi Cindy,
    Welcome!
    You will

    Hi Cindy,
    Welcome!
    You will find a world of knowledge and compassion here, I know I have. (my husband DX StageIII 6/2/10)
    Sending prayers for you and your son!
    Chriss

    Hey Cindy
    Sorry to hear about your son. You need to tell him about us and get him on here to talk. When I first came to this board I was a sad case. I just knew I was going to die...and soon... and everyone..including my family were just lying to me.... pacifying the poor little dying cancer patient. Yep... I was a mess. I was getting NO HOPE... no answers that soothed my fears... no one who really...I mean REALLY knew what I was going thru except THESE people.... They cried my tears... lived my fears.... and could feel my hurt. THEY reached out.... they were the ONLY people I believed.... they were in the nightmare... they had and continue to have...compassion for ME...this board and God... saved my life and continue to give me strength every day. I am stage IV. Click on my name and read my story. Just one more thing.... I know there are several people on here that speak highly of M.D. Anderson. I live in Illinois but went there for my second opinion. I was NOT impressed...not at all. So just because this place has a "reputation" does not mean they know it all. If I had listened to them I should have been dead last year. NO ONE... NO PERSON... in my opinion... knows how long you have on this earth. I don't want to downplay MDA because they have done many fantastic things.... BUT... when I heard from them that there was really nothing I could do because I was so ate up with cancer.... I really took it to heart... I mean THESE are the top dogs...they know!!!! NOPE...moved on determined...because of the support from this board....to WIN...to stay on TOP...NOT to die...NOT to let cancer win..... your son can WIN too...and he will. If you are not happy with your second opinion...get another...and another. Don't settle... You take care.

    Jennie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    So very sorry
    Oh, Cindy.

    I'm so very sorry. Your news just breaks my heart. I have 2 grown kids I love very much, and I can't imagine how I would deal with it.

    I'm not a Stage 4, but I do want you to know that I'm praying for your son and for your family. Please let us know how his treatment progresses. You'll find there are many people here who can give you lots of good advice about treatment centers, questions to ask, etc.

    *hugs*
    Gail
  • cindy5
    cindy5 Member Posts: 5
    dmdwins said:

    As a matter of fact
    Cindy,
    As a matter of fact I just returned from my 3 year scan after being diagnosed with Stage 4 colon cancer in October of 2007. I am currently NED (no evidence of disease) and doing great!!!! Please tell your son NOT to give up hope....I am soooo mad at the doctor that took that away from him. Now lets get him in the fighting mode. I believe his age will actually help him be better equipped to fight this darn disease. You are doing the right thing by going to MD Anderson for another opinion...they have a great reputation and it is nice that they are close to your home. There are many others on here that are Stage 4 and survivng and living well. I am sure you will be hearing from them too. Please come here for support and question...your son too...

    Smiles,
    Dawn

    Son with Colon Cancer
    Thank you, Dawn, for your optimistic response! It gives me hope and helps me realize that we are not alone.
  • cindy5
    cindy5 Member Posts: 5
    tootsie1 said:

    So very sorry
    Oh, Cindy.

    I'm so very sorry. Your news just breaks my heart. I have 2 grown kids I love very much, and I can't imagine how I would deal with it.

    I'm not a Stage 4, but I do want you to know that I'm praying for your son and for your family. Please let us know how his treatment progresses. You'll find there are many people here who can give you lots of good advice about treatment centers, questions to ask, etc.

    *hugs*
    Gail

    Son with Colon Cancer
    You all are amazing! I had never joined a discussion board before, so I was unprepared for all the quick and helpful responses. I will keep you posted on David's journey. Even better, I hope to convince him to join. I think he would be uplifted by all of you.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    Welcome
    Hi Cindy and glad you found this board. I am not stage IV so cannot answer a lot of your questions but I wanted to say "hi" and let you know that I will keep you and David in my prayers. There are many stage IV's here who have survived many, many years and I hope they will see your post and chime in.

    Getting mad and ready to fight is good. I believe I'd fire that doctor too. I DID fire my gastro.Hope is very important, hang onto it.

    -Pat
  • Nana2
    Nana2 Member Posts: 255
    Hi Cindy, and welcome to the
    Hi Cindy, and welcome to the board. My husband was diagnosed with stage 4 colorectal cancer last November 13th. He was given a grim prognosis by the Doctors locally. We went for a second opinion at Loyola, a teaching hospital in Illinois and were given much more hope, help and encouragement. We have also found so much loving help and insight on this board and so I'm glad you found your way here and I hope David does too. You are not alone in your battle!
    hugs and prayers,
    April
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Cindy
    I was diagnosed when I was 38 years old with Stage IV colon cancer. The first oncologist I went to was pessimistic and told me I had 2 years to live. We quickly went for a second opinion at Memorial Sloan Kettering and I met a much more optimistic oncologist who told me no one could predict the future, that she didn't know how I would respond to treatment. I just saw my oncologist today and got the news that my 21 month scan was clean. That means I have been NED or in remission for 21 months (I have been off chemo for 1 year). My oncologist told me that most recurrences happen in the first 2 years so she looks more to the 24 month scan as an indicator but I am thankfully getting close. My point is that the first doctor gave me no hope. The second doctor did give me hope. I found that hope was so important to how I approached treatment so I am glad that you are going to find a doctor that offers you both more hope.

    My advice to you would be as follows:

    1. Make sure your son is seen at a major cancer clinic. You are already headed to MD Anderson so you have that covered.

    2. Make sure to take a voice recorder and notebook to all appointments in order to record your conversations with his doctors. My husband and I attend all my major appointments together and we both take notes so that nothing is missed.

    3. Introduce your son to juicing. I had traditional surgery and chemotherapy but I am convinced of the value of juicing for my health. I did advise my doctor of my intentions before starting, however, so make sure you discuss it with your son's doctors. Carrot, apple, cucumber and celery is the standard concoction. You can search for "juicing" on this site and get tons of information.

    4. At your appointment at MDA ask them about an HAI pump. Your son may be immediately eligible for a liver resection (I had 40% of my liver removed), but if he is not, there is a targeted liver therapy protocol called Hepatic Aterial Infusion. HAI involves surgery to implant a small hockey-sized pump directly into the abdomen and route it into the hepatic artery. Chemotherapy is then delivered directly to the liver to provide for a concentrated and very directed therapy. There a quite a few members on the board who have had this treatment and I have met too many people to count who have had it and then had tremendous success with it. There are a number of posts here about it but just make sure to ask your MDA doctor about it. MSK is the leading hospital on this particular treatment.

    5. Encourage David to logon himself. I can't tell you how important it was to me when I was first diagnosed to "meet" people who had the same diagnosis as me and see they were doing well. I personally know 2 people who were colon Stage IV and are both NED (one NED for 6 1/2 years and the other 16 years). Everyone here is very welcoming. There is also another site at Colonclub.com which is geared towards those diagnosed under 50. I find that many here are also members there. Both are great support communities.

    Amy
  • christinecarl
    christinecarl Member Posts: 543 Member
    I am so sorry
    That's so very young, it greatly saddens me to read of so many young people getting this disease. I do not have any answers for you, but please know I will keep you all in my prayers.