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

cindy5
Posts: 5
Joined: Nov 2010

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.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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
Posts: 451
Joined: Aug 2008

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

cindy5
Posts: 5
Joined: Nov 2010

Thank you, Dawn, for your optimistic response! It gives me hope and helps me realize that we are not alone.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Cindy,
All I can add to the excellent previous comments is never ever give up. Your son is lucky to have your love. I hope you find doctors that say this is how we beat this illness. Keep looking till you do. At the moment I am focusing on relaxing and reducing stress and I think initial DX is probably the most stressful part of the cancer journey.
Prayers,
Pete
DX 3jun10 rectal
chemo radiation
Ultra Low LAR 7oct10
Folfox6 1 of 12 started 9nov10

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

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.

AnneCan
Posts: 3693
Joined: Oct 2009

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's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

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's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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.

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

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's picture
braelee2
Posts: 126
Joined: Sep 2010

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.

geotina's picture
geotina
Posts: 2042
Joined: Oct 2009

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

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

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 ass. 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

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

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's picture
lizdeli
Posts: 520
Joined: Jul 2009

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

Wenchie
Posts: 88
Joined: Apr 2009

Jennie, I second your opinion of MDAnderson. I also went to them and was discouraged. I saw Dr. Glover. I decided to come home for my treatment (which is the exact treatment that MDAnderson offered) and I'm still kicking. I think it's great to go for a second opinion but don't wear yourself out commuting when it's possible to get the same treatment in your hometown and you most likely won't feel like "one of the herd" as I felt at Anderson.

sharpy102's picture
sharpy102
Posts: 334
Joined: Apr 2009

@Roger: WOW...I mean...really. Reading your note, I realized the 'mistake' I had and my Mom. She would be 34 this year, but...I guess she gave up as she believed the doctors to "go home and enjoy life until she can". And I guess I also made the mistake of somewhat believing that, although not fully as I fought hard for my Mom, and I told her she will not leave, but I should've been more arrogant or pushie to get some sort of treatment...with the attitude you have, you'll win! I'll be standing by the bleachers raising the flag for you all as you guys win and reach the target! I am very proud of you and everybody on this board...you guys are ALL just great! I really envy that you guys have what my Mom didn't...hope. Good luck you all!

tootsie1's picture
tootsie1
Posts: 5001
Joined: Feb 2008

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
Posts: 5
Joined: Nov 2010

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
Posts: 826
Joined: Jan 2010

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

herdizziness's picture
herdizziness
Posts: 3387
Joined: Apr 2010

Dear Cindy,
I was told the same, I actually gave away my beloved 65 bug, my family totems, my favorite native vest, and all things that meant something to me, were given to the ones I wanted to have those possessions.
Turns out they were wrong!! Go figure!!
So find the right oncologist for your son, one you can put your faith and his life in.
My life truly has started over again, my zest for it, pretty unstoppable at this moment. After all, I was told to go home and die, but here I am, pretty sound (body wise, the mind well, depending on who you talk to i.e... ex-husbands LOL)and figure I'm going to be here a long time, according to my onc, 5 years and a lot more won't be an unexpected life span for me now. What a difference chemo and a few months makes.
I'm stage IV mets to various places including the liver, etc.
Most mets can no longer be seen after chemo, and the ones in my liver have shrunk so much, they can't barely see them now.
There are a few here that will recommend different diets, juicing, etc., I didn't change a thing, figure pretty much what I ate didn't give me this cancer, and staying on my normal diet and foods I love has kept my spirit up. To imagine myself going veggie of some sort or juicing, just made me want to blanch. To still enjoy the foods I love (I'm a meat/potato/seafood lover and known veggie hater) has helped me keep my good attitude about life. And my tumors have still shrunk unbelievably.
I'm waiting on the insurance company to approve the surgeries to remove the tumors from my colon and liver as I write this.
The fight is just beginning for your son and your family, you all can do this. It's a hard fight, but it can be fought!!!!
The unreality of it will be foremost in all your thoughts for awhile, the why's, will persist in your minds, try and get to the anger at the disease as fast as he can, so it can be fought with all his strength, get angry at it, kick it's ass, don't give up, don't despair too long, above all, don't let it win.
Winter Marie

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

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's picture
mom_2_3
Posts: 937
Joined: Nov 2008

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

cindy5
Posts: 5
Joined: Nov 2010

Amy,

Thank you for all of your suggestions -- they are quite helpful! I had heard of some type of "liver pump," but did not know that it was called an HAI pump. I will be sure to mention it at our appointment. I also like the idea of bringing at tape recorder to all appointments. Thank you also for your hopeful response. It is such an encouragement to my family. I am still trying to get my son to join this message board. I'm making some progress.... At this point, I think he still wants to think of himself as cancer-free. The whole process, and especially the way the doctor gave us the diagnosis, really has hit him hard. We, however, are not giving up, and David is slowly coming around. I hope that one day soon, you will see a post from him. Congratulations on your milestone. You will be in my prayers.

christinecarl's picture
christinecarl
Posts: 539
Joined: Sep 2009

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.

Kathleen808's picture
Kathleen808
Posts: 2269
Joined: Jan 2009

Cindy,
I am so glad you found us. I am so sorry that your young son is dealing with this disease. How hard it is to see our children suffer. As many have mentioned, getting to a top cancer hospital is key. MD Anderson is outstanding. I will keep both you and David in my prayers.

Aloha,
Kathleen

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

First, my prayers are with your son and your family.

Second, Get a new Doctor.

There are new treatments that changes the prognosis from 2007 of 50% at 5 years to 90% at 5 years. Find out what Doctors are researching his cancer and interview them, or find out whom has studied from them.

I interviewed one doctor whom I knew more about the current studies then she did. Then she charged me the most! I called her and she adjusted her billing.

Do not find a doctor whom tells you what you want to hear either. Find one that seems to have a solution and wants to be involved in the battle.

Part of the battle is personal attitude.
Fight the good fight!
mike

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

I'm 37 stage 4, have been for 3 years. I am currently in Guatemala getting my liver treated via Rapidarc. I have had 76 rounds of chemotherapy, 2 liver resections, dozens of smaller surgeries and foresee many more. I have fought tooth and nail with my Drs since day one and never been in charge of my treatment, until now. Before I began any treatment, I learned pretty much all there was to know about colon cancer and my situation. My situation was bad, with an original prognosis of 2 months. I begged my Drs to RFA my liver lesions before chemo. It's not standard procedure in the US so they wouldn't do it. Had Rapidarc or Novalis Tx been around I would have insisted on getting that first on my liver mets.
I don't know the location and size of your sons liver mets but they can be tricky. Hopefully he will respond well to first line treatment. Insist on having his cancer genetically tested. I'm sure MD Anderson knows to have it done but they might wait until he fails conventional treatment. There are only a few labs in the country that are set up to completely profile his cancer. Targetnow and CarisDx are the two. They have many labs but only one can do a complete test. Have it done now and research everything you can about his specific cancer's genetic profile.
Eventually they will get him ready for surgery. I would do my best to avoid a liver resection at first. Everyone is going to tell you this is the Gold Standard and the only possible avenue for a cure. That is the truth, sort of. There are many non-invasive techniques used to treat tumors that haven't been around long enough develop any empirical data. Do your homework first. Keep in mind, liver surgery will always be an option if the other treatments fail. The reason I say this is because of the chance for cancer spread during surgery. There is little chance of that during non-invasive procedures. The colectomy is a common procedure as are the adrenalectomies.
Don't let this diagnosis be the burden you have made it. He was just diagnosed with cancer, but you know he's had it quite a while. Imagine your life last year this time. He had cancer then. There is no reason this Thanksgiving should be any different than last. Insist he live his life as he has. Go, do, be, and live with this cancer just like he had last year. You're going to experience some bumps in the road. But that's all they are. Annoyances that can be handled. If you guys are smart about this, he can be cancer free in less than a year. Good Luck

HollyID's picture
HollyID
Posts: 940
Joined: Dec 2009

First of all, welcome to our family. You're family now as well, so please check in often. Have David check in as well -- We'd love to meet him.

Please tell David not to listen to that first oncologist. When David was born, I'm sure there wasn't an expiration date stamped on his bum. His oncologist is nothing short of a jerk. Finding a new one is priority and going to MD Anderson is a great start. An outstanding place (I've heard) with great treatments.

In short, yes, people do beat this crappy disease. I was on Folfox, as is pretty standard for colon cancer. I was a stage III. Just know that you're all in my prayers and thoughts.

cwork's picture
cwork
Posts: 37
Joined: Oct 2010

Hi Cindy, My name is Cindy too, and I have a son that will be 22 next month. I just can't even imagine how I would feel if I were in your position. My heart goes out to you and your son and I prayed for him off and on all night long, right along with my sister, and all the others on this board. It's funny how my prayers for my sister now included so many others, people I have never met. My thoughts on what the oncologist said about "a fight he will ultimately lose." Well.. yeah...... we all ultimately lose that fight, don't we. None of us lives forever. But, who is he to say to what your son will ultimately lose that fight. I lost a friend in a car accident a couple of years ago, here one morning, gone that night. When I was telling my Mother about it she said "Cindy, make the most of every day, because when you awake and put your feet on the floor each morning you do not know if you will lay your head down on your pillow that night." It really brought home to me how quickly any of use can lose our lives. While I don't have cancer at this moment (that I know of....) I may lose my life before many here. None of us know when that day will be or how it will come about. I think the difference is those with illness are just reminded of it more often than the rest of us. That doc was so wrong to have said that your son, and obviously has no compassion and should never have been a doctor. Fire him and move on. If you can get your son to come on the board here I think he will slowly begin to crawl out of that dark hole his doc put him in. This board offers hope, encouragement, support, and YES even SUCCESS! Your son may be around to witness that doc "ultimately lose his fight." I can't help you or him by sharing my knowledge or experiences with cancer as I am a loved one, and new to this as well. However, if you ever need to talk, vent, cry, whatever to a mom of a 22 year old son that she loves very much and has a loved one with cancer (my sister), I am here.

sasjourney
Posts: 393
Joined: Jul 2010

I can't believe your ex-oncologist would say such a thing!!!! He has no right and I am so sorry that David had to hear that. I am a stage IV diagnosed in March. I had colon and liver resection as well as hysterectomy in March and completed 11 rounds of chemo (folfox). I am currently NED and feeling great. I know of many other stage IV's that are doing very well many, many years after diagnosis. There are new treatments always being developed and there is always hope. Many cancer patients have been given months to live and survived for many, many years and end up dying of old age.

This board has been such a blessing...I can't even begin to tell you. The support is amazing so please ask anything.

You are in my prayers.

Hugs,
Sara

immbeloved's picture
immbeloved
Posts: 37
Joined: Oct 2010

i, too have recently been diagnosed with colon cancer after having a large ovarian cyst grow inside me which we learned during surgery was cancerous secondary to colon cancer, had resection, and total hysterectomy. pet scan revealed 4 large lesions on my liver. so now i am in the process of getting set up with oncologist, ct scan of liver, port-a-cath placement and then chemotherapy. my best case scenario is to shrink the liver tumors to the point where i can have a liver resection. i was told that if this happens i will have a 1 in 6 chance of long term survival. yeah, i cried alot that day. i'm 45 and was very active until my surgery. your son has gotten a raw deal that's for sure and it's probably even worse for you because you love him and hate to see him suffer. i am not a success story yet but we can "compare notes" as we battle this together. there are survivors out there. Be strong.

amber

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Doctors cannot tell you if you can beat it or not. They can't tell you how long you have left (other than getting close to being correct in the very final weeks).

I'm glad you found this board - sorry you have a need to be here.

MD Anderson is a great facility - good choice.

I would suggest that David look into joining another board also - the Colon Club. It was started by two young women dx'd with colon cancer. It's aim is to provide a community of support and information for those diagnosed before age 50. There are other stage IV survivors on that site that were dx'd in their 20's, 30's and 40's (along with a few that are older - but this is one place with a higher concentration of young people who do have some different concerns than those that have already raised a family). Age really is on his side, because normally the young are in better physical shape to help them through the rough treatments. http://www.colonclub.com

I am a realist. I am stage IV. I know that one day it will most likely be cancer that takes my life. But I am not giving up. I am fighting! Some people do beat stage IV cancer, and others live with it for many years before it finally takes them. I plan on getting many more years at a minimum. A stage IV cancer diagnosis is NOT an immediate death sentence. It is a wake-up call for sure. Time to prepare "just in case" and to live every day to its fullest. We all know we will die one day, but the subject is so taboo in our society that we avoid it.

I am very happy you fired the oncologist. My oncologist had a hard time talking to me about my recurrence. He did say what he is doing now is not curative, but is meant to keep me alive as long as possible - hopefully until a cure is found. If he'd told me that just because I was stage IV now, that I would definitely lose my battle, I would have fired him on the spot. Doctors are NOT God. They do not know how David will respond to treatments and surgery or other procedures.

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pepebcn
Posts: 6352
Joined: Aug 2010

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Sandi1's picture
Sandi1
Posts: 257
Joined: Aug 2008

Cindy, how dare the doctor say that to your son. Yes, there is no cure, but your son can sure as hell fight. My husband is stage 4 and like you we were in shock for awhile, but then we regained our composure and decided that we are going to fight the good fight. After 2 years, my husband is now cancer free but for this he will have to be on chemo for the rest of his life. Not the aggressive chemo that your son is probably on right now, just mild chemo and he gets it every three weeks. I can't even imagine how you are feeling, my son is also 22 and I don't know what I would do or think if it happened to him. Anyway, your son needs the will to fight, and then he will overcome this. Is your son going to have surgery? My husband had part of his colon removed. He also has multiple spots on his liver and numerous spots on his lungs. He is doing fine, it's a fight but it's worth it. Send me a private message if you have any questions or just need someone to talk to.

Sandi

Pdmetzger
Posts: 3
Joined: Oct 2010

Sandi,
I too am stage 4. I was diagnosed a year ago with colon cancer. I too have lesions on my lungs and liver. It really made me happy to hear that your husband is doing so well. I had 4 inches of my colon removed last December. I have been on Chemo since last January. I had a setback in June when my lung collapsed. I have allergies and asthma and I had coughed so hard that I caused a whole in my right lung. The doc said it was because I had weak spots where the Chemo had killed the cancer. I am still fighting. My last scan showed no substantial new growth. My oncologist said he considers me stable. I will still have to have Chemo every other week for the rest of my life. I go in on Wednesday and then wear the pump till Friday. I will do whatever it takes. Again your post has given me new hope. The doctor that did my colonoscopy said I had 6 months to a year to live. I don't plan on going anywhere anytime soon unless God has other plans for me. I will pray for you and your husband. Again thank you so much for your post. Pege

bigCrandy
Posts: 75
Joined: Sep 2008

Hey Cindy, very sorry for your son's diagnosis, way too young. being young may work to his advantage, I assume he is still on the healthy side and physically strong. This will definitely help him overcome the chemo side effects. I was a stage 3C survivor until last April when I was diagnosed with mets to lungs and lymph nodes. Now I'm stage 4. There is really not any noticible difference, they just changed the chemo somewhat. I've been on chemo for 26 months straight but it's working. The tumors are shrinking and for the last 3 years I have worked full time as a landscaper. There is always hope and only God knows what lies ahead for each of us, he is in control. Don't ever give up, stay positive, and put your faith in the Lord. My prayers are with all of you, may God Bless. Randy

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Cindy, hello. I am a new member and wanted to tell you that you, your son and family will be in my prayers. I am Stage IV diagnosed last Thanksgiving and doing well. Finished 6 mos of Folfox with Avastin and now have Avastin only every 3 weeks. My tumors are in the liver, shrunk some but at this time not enough to operate. I LOVE my oncologist, his philosophy and his entire staff's is "Believe". He is very positive, upbeat and when I have my moment here and there he tells me about the patients who are there on Avastin only for over 3 years. I have had unbelievable support from family and friends, plus prayer gets me through a lot.

I just want to say I am speechless at the comments I read tonight, responding to you. What a wonderful group of people here on this board. I wish I had known of it sooner but am thrilled to be here now. Your posts to Cindy helped ME!

Take one day at a time if I can offer any advice. Chemo is not the most fun thing I've done in my life (am 63) but he will make it through. And to everyone else thank you for all your posts, they have helped me and touched my heart. Joyce

AnneCan
Posts: 3693
Joined: Oct 2009

Welcome to this forum. I hope you will continue to find this a good space to visit. None of us would want someone to have to join, but it is a wonderful spot to come to. I am glad to hear you are doing so well! Keep on doing whatevever you are doing.

glinka65
Posts: 132
Joined: Feb 2009

stage 4 here cindy 2 years and going strong, my prayers are with you guys!!! never let them give you a number, there are tons of people on here still around with stage 4 , i was givin 2 years...up to now they were wrong, keep the faith and keep coming here these are the strongest good hearted folks ive ever seen!!! if you ever have a question about anything please feel free to ask..its a long journey but this can be beat!!!

Pdmetzger
Posts: 3
Joined: Oct 2010

Hello,
I can't believe his doctor was so blunt. I was diagnosed a year ago with colon cancer. I am also stage 4. The doctor that gave me my results said that I had 6 months to a year. It will be a year the day before Thanksgiving. I am still fighting. I am 46 years old. I have grown children and grandchildren. Your son needs to think positive. Prayer and positive thoughts along with Chemo are what's keeping me going. I had 4 inches of my colon removed on December 23rd of last year. I needed the primary source of the cancer gone for my own piece of mind. I have lesions on my liver and both lungs. I will not give up. I have a friend that has cancer, they gave her 4 months to live. That was over 3 years ago. Don't let him give up. Every day he lives is another day that they could find a cure. He will have good weeks and bad weeks. During the good times he needs to do whatever makes him happy. The best thing you can do for him is fo be there and to listen. He is young and that will work to his advantage. Make sure that the docs help him to manage any pain he has. I wear a fentanyl patch. It's easier than remembering lots of meds. Watch his diet. Lots of fresh fruits and vegetables will help to keep him healthy for the Chemo treatments. Make sure that he avoids anyone who might be ill. He can get masks from the hospital to wear if he needs to be out in a crowd. Most of all, get as much information as you can about treatment options. Get a second opinion if you aren't comfortable with the answers so far. Just be there for him. Take care of you too. If you are wore out, you can't help him. Try to keep life as normal as possible. I know that sounds crazy, but it does make a difference. It is hard fo be seen as a cancer patient all the time. I didn't lose my hair, which I thought I would, then I read here that many colon cancer patients don't. I hope this helps you in some way. I will pray for your son. God bless you all. Pege

SusanPCS
Posts: 3
Joined: Nov 2010

Hi Cindy,
I am a 66 year old female who was diagnosed in May of 2009 with stage 4 colon cancer. I had colon surgery at he Medical University of South Carolina and learned that the cancer had not spread to the lymph nodes, but it had spread to my liver where I had two small spots.
After the colon surgery, I underwent one half of a typical folfox plus Avastain treatment. Then (when the cancers had shrunk) I had surgery on my liver at MDAnderson in Houston. Several months after the surgery, I received the other half of my folfox treatment.

As of May 2010 and September 2010, my PET scan, CT scans, and blood work indicate that I am cancer free. I thank God and bless modern medicine for my spectacular results. I also know that I have to be watchful because the cancer can come back.

Susan

AnneCan
Posts: 3693
Joined: Oct 2009

Welcome to this forum! It sounds like you are doing well; good for you!

xcguy08
Posts: 1
Joined: Dec 2010

Tell me about your son? I, myself am 22 years old, and am a little worried that I may have it or a possibility of having it, it has run through the men in my family and lately, I have experienced off GI problems, I have never had before, I am sure they are nothing, but I saw your post, and wanted to learn about your son.

Nana b's picture
Nana b
Posts: 2706
Joined: May 2009

XCguy08
Tell me about your son? I, myself am 22 years old, and am a little worried that I may have it or a possibility of having it, it has run through the men in my family and lately, I have experienced off GI problems, I have never had before, I am sure they are nothing, but I saw your post, and wanted to learn about your son.

********************

you may want to start you a new post so others can chime in. If it run in your family then you should get a colonoscopy 10 years earlier. For example my age was 50 when DX so my daughters should get checked at 40, or earlier if they feel something is not right. Don't wait!!

taraHK
Posts: 1961
Joined: Aug 2003

Hi Cindy.

So sorry to learn about your son. I was 44 when diagnosed. 22 is heart-breaking.

As others have said, approaches to cancer -- including Stage IV cancer -- have changed so much over the past few years. Old models, statistics and ideas are simply obsolete. There are many new drugs, types of surgery and technological advances, new ways of managing the side-effects of treatments, and new "attitudes". I myself am a strong believer in the "chronic disease" model. Of course, our first choice for everyone is always complete cure! But, if that is not possible (and I am in this group), then we can perhaps think of cancer as something like diabetes or other chronic health conditions ....needs management, but we can live WITH it for a long time.

I was diagnosed almost 8 years ago. I've had periods when I've been receiving treatment, and many periods when I have been NED (no evidence of disease). I have lived a good quality of life throughout -- even when on treatment I've managed to work, exercise, travel and play. When I'm NED I do even more -- especially of the last three!! I did a 25 km hike (lotsa mountains) last year (brag brag!). Now I'm on chemo again and can't hike but I'm doing more yoga......(for example).

MD Anderson sounds like a very good move. The most important thing is to find a doctor -- or a team of doctors -- whom you trust and respect. For me, that meant finding doctors who were supportive of my "personality/style" (I ask a lot of questions, I come with some opinions of my own to discuss, I like research data to support decisions, etc.). But everyone is different. Whatever David (and you - his family) needs, he should make sure he gets -- the doctors serve us.

Sending prayers love and best wishes your way

Tara

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Hi Cindy, so sorry your family had to hear those terrible words. Your son is so young. Now it's time to get busy his treatment and just know you have found the right place to be on here to help you with love and support. He will find the Dr that feels right for him and gives him the support, treatment, and encouragement that he needs to have in that way also. I hope he gets on here soon to see for himself there are so many others with similar stories...just not so dang young!

Gail

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