stage four colon cancer

Yoder426
Yoder426 Member Posts: 1
in Colorectal Cancer #1
  1. hello my name is kelly yoder and my husband was diasgnised with stage four colon cancer in april 2014. he is 33 years old and we have 2 children 17  and 9. he has raised my 17 year old her entire life and our 9 year old is his. we found out this is genetic and they keep telling us that the research they get from my husband may save our son from ever getting it. It seems like we are being left out of alot that is going on and we have yet to been asked anything about family issues and what seems to be anything that needs to be asked for the research. We have a great team we thought at first but now I am wondering should we get a second opinion ect.... he hasd only had one round of chemo and no life expectancy mentioned. I dont know how to feel about this but have been told to stay positive always but to better prepare our selves for the future and counceling is the way I feel but the oncology team is being very vague on what they artelling use. has anyone been through the same experience? also, the team doesnt seem to be following what they have said during our stay at tge hospital about having our back and ensuring this family that the research team will take care of us financially and as I watch all of our things be taken and cut off, I cant help to think, someone or something is preventing this from happening because he is constantly worried and overdoing hisself to ensure if things go south thst we are okay. thanks for any help and answers?

Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
    Welcome, Yodder

    I am sorry to hear about your husband, and I am always saddened when this disease hits those as young as he is. 

    Another thing that bothers me is when I hear that Doctor's stamp an experation date on a person.  My personal experiene with my Oncologist is that he told me right when I was diagnosed, what the stats were, what my chances of survival were, and then has never, ever treated me as though I was going to die. Even at Stage IV, he always expects me to beat the odds and has told me such. I like this. I like it allot. I really don't need to be told how serious it is, I know that already. I heard the stats, and then it is up to me to beat them while preparing for what might happen. 

    I am sure that both you and your husband are quite aware that he may pass from this disease, and its good to prepare for that eventualitly, and then work hard and think that he is the one who is going to beat the odds. Plenty of us do. Several here on the forum are long term Cancer survivors. 

    Being positive is, in my opinoin a HUGE benifit when you have Cancer. 

    Its never too late to get a second opinon. If that will make you both more confortable, then go for it. If you are at all worried about your treatment, then get that second opinoin. 

    You have found a wonderful forum. We have much to offer here in terms of information, positive energy, support, love. A place where you can vent, weep, laugh, and definitelt find someone who is pretty much on the same path of treatment, or side effects both physical and emotional. 

    Again, I welcome you. 

    Sue - Trubrit

  • NewHere
    NewHere Member Posts: 1,427 Member
    #3
    Not Clear

    As trubrit said, you found a good place here with a bunch of great people, though we are sorry you have to be here.

    I had a bit of a problem figuring out what was going on, though generally second opinons are a good idea.

    Want to see if I am following correctly so a couple of questions - Was he diagnosed in April, 2014?  When you say one round of chemo, do you mean 12 treatments?  Any surgery done or planned?  Are you in a research program or are they asking for tissue samples for further research?  Is it a special hospital like St. Judes in terms of cost structure and you were told nothing is required to be paid?  What are they talking about in terms of saving your son?  There are certain genetic issues for families, so my immediate family (siblings, nieces and nephews) all need to be screened earlier since I have cancer.  

    Anyway, hang in there.  This cancer stuff is draining, but each day there are more advances so stay positive as you go through it and use this board, it is a great resource.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #4
    NewHere said:

    Not Clear

    As trubrit said, you found a good place here with a bunch of great people, though we are sorry you have to be here.

    I had a bit of a problem figuring out what was going on, though generally second opinons are a good idea.

    Want to see if I am following correctly so a couple of questions - Was he diagnosed in April, 2014?  When you say one round of chemo, do you mean 12 treatments?  Any surgery done or planned?  Are you in a research program or are they asking for tissue samples for further research?  Is it a special hospital like St. Judes in terms of cost structure and you were told nothing is required to be paid?  What are they talking about in terms of saving your son?  There are certain genetic issues for families, so my immediate family (siblings, nieces and nephews) all need to be screened earlier since I have cancer.  

    Anyway, hang in there.  This cancer stuff is draining, but each day there are more advances so stay positive as you go through it and use this board, it is a great resource.

    They don't tell you how long

    They don't tell you how long you have to live right away. It's not like it is on TV, as I found out. But if they do they're just guessing anyway amd many people live a lot longer than the time they're given. I didn't find out what stage I was until mine was staged during surgery, five months after diagnosis, and I've never been given an expiration date. It's now coming up on a year since my surgery and there's no sign of recurrence. But remember that it's different for everyone. You can't go by how it was for someone else.

    Jan 

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
    Second Opinions

    Sorry to hear of your husband. This forum is a great resource for information.

    I am strongly in favor of getting a second opinion. They can help by: 
    1- Confirming that your initial choice may be the best option and
    2- They can provide you with a alternative (better?) choice of treatment.

    I don't feel that ANY doctor with any common sense could tell you how long you have unless they are considering shooting you in 6 months or whatever timetable they set for you. My personal experience was that Onc #1 gave me 6 months (which I found out is the most common response) while Onc #2 said "I believe I can help you but we are not doing what Onc #1 said". I will never know what might have happened if I didn't get the second opinion but I doubt I'd be writing this post 11 years after my DX.

  • impactzone
    impactzone Member Posts: 551 Member
    #6
    So sorry to hear that but I

    So sorry to hear that but I was dx Stage 4 with liver and lung mets almost 9 years ago. I still teach and coach and have seen my kids graduate middle school and high school. I became the internet colon cancer expert the first month but then realized that this is a marathon, not a sprint and just did all I could to stay healthy, eat right, get surgeries asap and try to get as much negative stuff away as possible. Liver surgery, colon surgery, 4 thoracic surgeries, 10 months of chemo... pulmonary embolisms... it all just runs together now. I kinda like the front windshield analogy... There is a reason you have a big front windshield and a small rear view mirror.... its more important what is in front of you than whats behind.... gotta look back occasionally but there is hope.

     

    All my best

    Chip

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #7
    Hi Kelly

    Sorry that you and your family have the need for this board, but glad you found it.  There are lots of very helpful folks here, not only about their experiences but also with emotional support.

    First, be careful about giving personal details (like your full name).  While I don't believe that anyone here would use it to your detriment, the information posted here is accessable via internet searches.

    Second, everyone should have their affairs in order, particularly if there are children involved.  We don't know what day or hour we will leave this world.  Accidents do happen which take parents from their children every day.

    I am not familiar with the hospital you mention.  Can you tell us what state you are in?  We have memeber from all over and someone may be able to suggest another source for that second opinion.

    Does your hospital have a patient advocate?  Most do these days.  If so, then you need to speak with them about your concers whether about care, treatment, information, finances...whatever.  They can certainly help or direct you to someone who can.

    While there are statistics out there about survival rates, there are three things to remember.  They are based on years old data and do not necessarily reflect the results of todays treatment options.  There is a bad side and a good side to every statistic, and there is no reason why your husband cannot end up on the good side.  Third, each person is unique.  What helps one person may not help another.  Options should be explored, particularly if you are not satisfied with the care being given.

    None of us knows what our life expectancy is, even those without a critical diagnosis.  Making the most of each day is the best way to insure that nothing of importance is left undone.  Many do live long productive lives with a chronic illness, even cancer.

    Wishing your husband best results with his treatment and health.

    Marie who loves kitties 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #8
    Getting Second Opinion

    That is always a good thing and never hesitate to ask for it.  If you don't like the way your team is working then ask for another one.  You should be able to tell and ask them anything.  Make sure you are comfortable with what is going on, if not it's time to move on.  Don't expect a "term limit" as they usually don't bring that up and why should they.  We are all unique and handle and deal with things differently.  We should trust them and if you don't, get one that you do. 

    Kim

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