Back from the dr. NOT GOOD NEWS please help me here.....

Jason & I just returned from his dr. appt. this morning & the news was devastating. He scheduled his colon surgery for Friday, said he would remove the right side of his colon & then when he has had time to heal a little he will start him on Chemo. THEN, the nurse came in & said the dr. wanted to speak to me, alone. (while the other nurse was setting up Jason's surgery appt. with him) The dr. showed me the CT Scan from Friday & said the tumor in/on his colon is the size of a football, the cancer has also gone into his stomach, a little in his liver, & lymph nodes. He said he isn't even sure he will be able to operate once he gets him opened up, but IF he can he said he may be able to cut out that part of his stomach, & if he is able to do that then Jason may have up to 2 years. If not, well, I don't even want to think about that. I'm losing it here, I really need some good outcome stories, please....anybody.

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Comments

  • Vickilg
    Vickilg Member Posts: 281
    Hi there

    I'm so sorry your husband and you are going through this.  Can doctor do radiation first?  I started with radiation then surgery and then chemo.   Or did they say they will start with chemo first?   The was just begun his journey so there are options.   I do not agree that they held this news from your husband.   He deserves to know what is happening and the two of you can support each other.  

  • gizzyluv
    gizzyluv Member Posts: 143
    Vickilg said:

    Hi there

    I'm so sorry your husband and you are going through this.  Can doctor do radiation first?  I started with radiation then surgery and then chemo.   Or did they say they will start with chemo first?   The was just begun his journey so there are options.   I do not agree that they held this news from your husband.   He deserves to know what is happening and the two of you can support each other.  

    I think....

    I think the reason he is doing the surgery first is because the tumor is SO large it's close to blocking his colon completely. I thought the same thing about the radiation (not until after we left the office, of course) but Jason's dr. is a highly renowned colorectal cancer surgeon, so I do trust what he believes should be done first. I'm still in disbelief....it's like I'm in a bad dream. What stage were you in & had it spread?

  • Vickilg
    Vickilg Member Posts: 281
    gizzyluv said:

    I think....

    I think the reason he is doing the surgery first is because the tumor is SO large it's close to blocking his colon completely. I thought the same thing about the radiation (not until after we left the office, of course) but Jason's dr. is a highly renowned colorectal cancer surgeon, so I do trust what he believes should be done first. I'm still in disbelief....it's like I'm in a bad dream. What stage were you in & had it spread?

    Me

    At first I was Stage 3 but had recurrence with mets to multiple locations so now I am stage Iv 

     

     

  • gizzyluv
    gizzyluv Member Posts: 143
    Vickilg said:

    Me

    At first I was Stage 3 but had recurrence with mets to multiple locations so now I am stage Iv 

     

     

    Did you have surgery? and if

    Did you have surgery? and if you don't mind me asking, where are the mets? This is all so new to me, I feel like I'm drowning, I just don't know what to do. One thing I DO know to do though is PRAY!!!!

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hang in there

    This is all a bit odd to me.  First of all, why would the doc only share this extensive info with you?  Is there some good reason to not let your husband in on how sick he is? 

    I know you mentioned that you have no insurance, but that should not keep you from getting the best care possible for your husband.  I too was without insurance when diagnosed and had surgery.  You just have to be upfront about your financial situation with docs and hospial.  There are grants and financial aid available. 

    Under other circumstances I would say you need a second opinion, but I am not sure you have time for that now.  Gettig Jason thru a sucessful surgery is the key now.  It may be that the tumor has moved into the abdomin and is over shadowing the stomach but not into it.  Don't let the 2 year prognosis weigh on your mind.  Many here have been given far less time at diagnosis, but with surgery and followup treatments have continued to live and thrive many many years.

    Prayers for you and Jason that all will turn out better than expected with the surgery.

    Marie who loves kitties

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    I'm sorry Kris.  I know how

    I'm sorry Kris.  I know how much this sucks.  My husband was diagnosed stage 4 in August and we got the same 2 yr prognosis.  It seems drs say that for all stage 4 patients regardless of why they are stage 4.  As you can see here many stage 4 patients are around much longer than 2 yrs.  That doesn't mean that your husband or mine will be - we can only hope and pray.   This is so hard, but I can tell you that after 4 or 5 months, I found there were finally days that I didn't cry.  The first few months and especially the first month, I cried often and felt sick to my stomach all the time.   One of the things I hate about cancer is it feels like it steals your sense of the future. Everyone says one day at a time - that has been difficult for us as planners!  We always thought and talked about the future and now we don't.   Well we still do but it feels sad.  

    Others will come along and give you advice about treatments, etc. I just wanted to let you know I understand what you are going through.  Hang in there and remember to breathe!  

    P.S.  I agree with Vicki - the doctor should have asked you both together how much info you wanted and not laid it on you.  That's not fair.

  • janie1
    janie1 Member Posts: 753
    jen2012 said:

    I'm sorry Kris.  I know how

    I'm sorry Kris.  I know how much this sucks.  My husband was diagnosed stage 4 in August and we got the same 2 yr prognosis.  It seems drs say that for all stage 4 patients regardless of why they are stage 4.  As you can see here many stage 4 patients are around much longer than 2 yrs.  That doesn't mean that your husband or mine will be - we can only hope and pray.   This is so hard, but I can tell you that after 4 or 5 months, I found there were finally days that I didn't cry.  The first few months and especially the first month, I cried often and felt sick to my stomach all the time.   One of the things I hate about cancer is it feels like it steals your sense of the future. Everyone says one day at a time - that has been difficult for us as planners!  We always thought and talked about the future and now we don't.   Well we still do but it feels sad.  

    Others will come along and give you advice about treatments, etc. I just wanted to let you know I understand what you are going through.  Hang in there and remember to breathe!  

    P.S.  I agree with Vicki - the doctor should have asked you both together how much info you wanted and not laid it on you.  That's not fair.

    I'm sorry.
    I know how hard this is and overwhelming. In 2 years time, there will be clinical trials that he could try after some surgery and chemo.
    It will take a while for this to sink in, but it will get a little easier when you have more information after surgery.
    Lean on your God, it WILL help you get through day by day. Do you have supportive people, too, in your community, and church?
    I think I remember you said you were in TN. There is a research center (Sarah Canon), that may be a good place down the road to check out clinical trials. I think it is in Nashville. Anyway, don't worry about that now. Just want you to know there are people working on new treatments. Go with the plan, settle in, and keep learning. There will be highs and lows.
    Praying for you.....adding you both to my prayer list.
    xoxoxo
  • gizzyluv
    gizzyluv Member Posts: 143

    Hang in there

    This is all a bit odd to me.  First of all, why would the doc only share this extensive info with you?  Is there some good reason to not let your husband in on how sick he is? 

    I know you mentioned that you have no insurance, but that should not keep you from getting the best care possible for your husband.  I too was without insurance when diagnosed and had surgery.  You just have to be upfront about your financial situation with docs and hospial.  There are grants and financial aid available. 

    Under other circumstances I would say you need a second opinion, but I am not sure you have time for that now.  Gettig Jason thru a sucessful surgery is the key now.  It may be that the tumor has moved into the abdomin and is over shadowing the stomach but not into it.  Don't let the 2 year prognosis weigh on your mind.  Many here have been given far less time at diagnosis, but with surgery and followup treatments have continued to live and thrive many many years.

    Prayers for you and Jason that all will turn out better than expected with the surgery.

    Marie who loves kitties

     

    I don't know

    I honestly don't know why he only shared the information with me, but I did tell Jason what the dr. said about it being in his stomach & what he said about there being a possibility that he won't even be able to take the colon/tumor out. One thing that puzzled me is that when the dr. said it's in his stomach, I told him that just last week he had an endoscopy done & it was all clear. They even did biopsies of the stomach & surrounding areas, so I when I told him that he said "that doesn't matter" then proceeded to show me the spots of cancer in the CT Scan pictures. The dr. doing the surgery is a highly renowned colorectal cancer surgeon, he has been in practice for many, many years & I have never heard anything but good things about him. I have been thinking about contacting another Cancer Treatment Center (in Knoxville....we're in Maryville, Tn.) but I can't really do anything until he is approved for TennCare (medicaid, in the state of Tn.) I'm gonna be finding out about that today or tomorrow. This is all such a shock to me & to everyone....it's like my sister said "this kind of thing only happens to other people".....well, surprise! We are now "the other people".....=( Thank you so much for your encouraging words, I get the feeling I'm gonna be turning to you all a LOT in the near future! Take Care & God Bless, Kris

  • gizzyluv
    gizzyluv Member Posts: 143
    jen2012 said:

    I'm sorry Kris.  I know how

    I'm sorry Kris.  I know how much this sucks.  My husband was diagnosed stage 4 in August and we got the same 2 yr prognosis.  It seems drs say that for all stage 4 patients regardless of why they are stage 4.  As you can see here many stage 4 patients are around much longer than 2 yrs.  That doesn't mean that your husband or mine will be - we can only hope and pray.   This is so hard, but I can tell you that after 4 or 5 months, I found there were finally days that I didn't cry.  The first few months and especially the first month, I cried often and felt sick to my stomach all the time.   One of the things I hate about cancer is it feels like it steals your sense of the future. Everyone says one day at a time - that has been difficult for us as planners!  We always thought and talked about the future and now we don't.   Well we still do but it feels sad.  

    Others will come along and give you advice about treatments, etc. I just wanted to let you know I understand what you are going through.  Hang in there and remember to breathe!  

    P.S.  I agree with Vicki - the doctor should have asked you both together how much info you wanted and not laid it on you.  That's not fair.

    Yes, it sucks!

    We just celebrated our 5 yr. anniversary in October. I'm like you, I have found myself thinking about all the plans we have for the future, that I don't want to even THINK about now, let alone talk about with him. If you don't mind me asking, had your husbands cancer spread? I'm still trying to wrap my brain around the tumor being as big as a football (yes, a football), & HOW he could not have known....I mean Jason isn't a large man, he weighs 184 now (I think) he has lost about 10 lbs. over the past few months, but how can something that large be inside you & you have no idea?.....It's just mind boggling. I just wonder how long he has had this....it must be years for it to be at this stage.

    Thank you so much for your support, I get the feeling you & everyone on here are gonna be hearing from me quite a bit from now on....I feel so blessed to have found this site!

  • gizzyluv
    gizzyluv Member Posts: 143
    janie1 said:

    I'm sorry.
    I know how hard this is and overwhelming. In 2 years time, there will be clinical trials that he could try after some surgery and chemo.
    It will take a while for this to sink in, but it will get a little easier when you have more information after surgery.
    Lean on your God, it WILL help you get through day by day. Do you have supportive people, too, in your community, and church?
    I think I remember you said you were in TN. There is a research center (Sarah Canon), that may be a good place down the road to check out clinical trials. I think it is in Nashville. Anyway, don't worry about that now. Just want you to know there are people working on new treatments. Go with the plan, settle in, and keep learning. There will be highs and lows.
    Praying for you.....adding you both to my prayer list.
    xoxoxo

    Thank you

    I will feel a lot better if the surgery is successful, but there is that word...."IF" the surgery is successful. The dr. told me that he may open Jason up & see that there is nothing he can do. I completely believe in the power of prayer, so that's what I've been doing (a lot) is praying that the lord will place his healing hands on Jason & shrink the tumors, & rid his body of this terrible disease. It's all in his hands now....Thank you for adding us to your prayer list, it means a lot. Take care & God Bless, Kris

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Me again

    Dear Kris,

    I just read your early AM post about Jason.  Did you or he let the surgeon know about the vomiting?  If so, did he tell you what to do in case it occurs again?

    Based on the size of the tumor, I hope he told you that an immediate trip to the ER would be appropriate.  As others posted on that other thread, those symptoms can indicate a total blockage...either due to position or growth of the tumor. 

    I just hate it that the doctor left it to you to tell Jason about the CT results and prognosis.  It left you with a terrible burden, which you seem to have handled well.

    Praying that the surgeons hands be guided for best outcome with the surgery.

    Marie who loves kitties

  • jen2012
    jen2012 Member Posts: 1,607 Member
    gizzyluv said:

    Yes, it sucks!

    We just celebrated our 5 yr. anniversary in October. I'm like you, I have found myself thinking about all the plans we have for the future, that I don't want to even THINK about now, let alone talk about with him. If you don't mind me asking, had your husbands cancer spread? I'm still trying to wrap my brain around the tumor being as big as a football (yes, a football), & HOW he could not have known....I mean Jason isn't a large man, he weighs 184 now (I think) he has lost about 10 lbs. over the past few months, but how can something that large be inside you & you have no idea?.....It's just mind boggling. I just wonder how long he has had this....it must be years for it to be at this stage.

    Thank you so much for your support, I get the feeling you & everyone on here are gonna be hearing from me quite a bit from now on....I feel so blessed to have found this site!

    Yes, his spread to distant

    Yes, his spread to distant lymph nodes (para-aortic)  which makes him stage 4.   It does seem odd and scary that so many get to stage 4 without even knowing anything was wrong. 

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    gizzyluv said:

    Thank you

    I will feel a lot better if the surgery is successful, but there is that word...."IF" the surgery is successful. The dr. told me that he may open Jason up & see that there is nothing he can do. I completely believe in the power of prayer, so that's what I've been doing (a lot) is praying that the lord will place his healing hands on Jason & shrink the tumors, & rid his body of this terrible disease. It's all in his hands now....Thank you for adding us to your prayer list, it means a lot. Take care & God Bless, Kris

    No more ifs

    Take the IF our of your vocabulary. 

    Use When and after and in the future just like you have been doing these last five years of marriage. 

    We, all of us, know what the ifs could be, its not like we're hiding our heads in the sand, but we need to face this with nothing but positives. 

    Face one step at a time, don't rush ahead. 

    When Jason has the surgery, then you think about what they found. When they stage the cancer, then you face what comes next. Its all so overwhelming, but if you worry about what 'might' happen, your journey will be all the more harder. 

    I am weeping for you and Jason. I am weeping for myself and everyone else who is fighting this battle. 

    And I'd be having a word with the Doctor, who has no right to talk to you abuot the seriousness of Jasons condition and not him.  

    You are both in my thoughts and prayers. 

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    P.S.

    Did you see the cancer on the CT scan? Did it look the size of a football?

    A football is rather large, and you'd think his stomach would be somewhat distended. Remember, the Dr's make mistakes. I'd be taking the 'football' diagnosis with a pich of salt.  Look forward to that surgery, then you will know 'for sure' what size, what damage, if any, has been done.  Then, as I said in a previous post, face the next step. 

    One step at a time, and DO NOT give up hope. 

  • KathiM
    KathiM Member Posts: 8,028
    2 words: SECOND OPINION!!!

    WOW!  This guy may be a great surgeon, but it sounds like his bedside manner STINKS!!!

    I would question all of it...and, as others have said, there are options to help with the costs....

     

    That all said, if you read my page....I was told that my cancer was 'everywhere' in my abdomen and that, at best, I had 6 months to live.  I should "get my affairs in order...yada yada yada...."....

    Oh, that piece of news was delivered the day after Thanksgiving, 2004....(8 years)  

    At 6 months, I was over all treatment for the rectal cancer, and on to the breast cancer that was found during a PET scan for the rectal cancer....Now, I just was 'graduated' to yearly visits to my oncologist...and only because she likes to see her successes....

     

    Everyone is different....statistics are guidelines....I'm not saying it is not serious, but you have just started your journey...and there are many folks, both here and elsewhere, who are living with stage IV colon cancer...(I know some...I still mentor many)...

     

    The most important thing is to be comfortable with your husband's treatment team.  I must admit, there were some things that at first the doctor was hesitant to tell me...but I squared that away...I worked in a hospital, my beau is a doctor...I had heard it all...so I wanted to hear it all...

    BIG hugs, Kathi

  • KathiM
    KathiM Member Posts: 8,028
    KathiM said:

    2 words: SECOND OPINION!!!

    WOW!  This guy may be a great surgeon, but it sounds like his bedside manner STINKS!!!

    I would question all of it...and, as others have said, there are options to help with the costs....

     

    That all said, if you read my page....I was told that my cancer was 'everywhere' in my abdomen and that, at best, I had 6 months to live.  I should "get my affairs in order...yada yada yada...."....

    Oh, that piece of news was delivered the day after Thanksgiving, 2004....(8 years)  

    At 6 months, I was over all treatment for the rectal cancer, and on to the breast cancer that was found during a PET scan for the rectal cancer....Now, I just was 'graduated' to yearly visits to my oncologist...and only because she likes to see her successes....

     

    Everyone is different....statistics are guidelines....I'm not saying it is not serious, but you have just started your journey...and there are many folks, both here and elsewhere, who are living with stage IV colon cancer...(I know some...I still mentor many)...

     

    The most important thing is to be comfortable with your husband's treatment team.  I must admit, there were some things that at first the doctor was hesitant to tell me...but I squared that away...I worked in a hospital, my beau is a doctor...I had heard it all...so I wanted to hear it all...

    BIG hugs, Kathi

    Also, since it seems it would help....

    My beau and I are visiting the Western (wailing) Wall of the old synagogue in Israel at the end of the month.  If it is ok....I will post Jason's (and yours)

    name there...a friend of mine did that for me, the December after I was dx'ed....I always thought it was part of my help....*grin*....let me know if it's ok!

     

    Hugs, Kathi

  • PatchAdams
    PatchAdams Member Posts: 271
    Some hope

    A dear friend of mine went for an MRI prior to having her gall bladder removed and they found pancreatic cancer that had spread to her stomach and spleen plus many lymph nodes.  She had the Whipple procedure to remove the diseased parts and was given 5 months to live..... four years ago. She did have Stage I breast cancer found by a PET scan two years later, but her other cancer has not returned.   My friend is a believer in prayer (as am I), too! 

     

     

  • Goldie1
    Goldie1 Member Posts: 264 Member
    Dear Kris...

    My husband was diagnosed 6/11, stage iv, with numerous mets to the liver, now also in the lungs.  Pat was in a great deal of pain from the tumor pushing on his colon.  His surgeon wanted Pat to do radiation and chemo before surgery to shrink the tumor.  So, he put a stent in to help keep the tumor from pushing on his colon.  The relief was immediate.  Radiation everyday (except weekends) for 6 weeks.  Also chemo till 12/11.  On 1/30/12, he had his LAR surgery/colostomy and the stent was removed at that time.  Pat is still going for chemo treatments every other week.  He has also returned to work and takes each day as it comes.  One thing about his oncologist...he never gave Pat a time frame, which we are thankful for.  I know each person is different but there are some people on here that went years over that given time frame.

    Take care,

    Ellen

  • Questionable Ethics Questionable Surgeon

    I am so sorry you and your husband are facing this, but at least you're facing it together. 

    In regard to this post and your surgeon, the best thing I can say is SECOND OPINION, SECOND OPINION, for a couple of reasons. 

    In my opinion, your surgeon's choice to speak to you while keeping your husband in the dark is unethical, at the very least.  In addition, by sharing your husband's private medical information with you while keeping your husband ignorant of the discussion may may have been a violation of the law. 

    Regardless of medical ethics or legal standards, your surgeon violated your husband's trust which to me would call into question his qualifcations to operate, on me at least. 

    Something you should be aware of in regard to the "averages."  At least one website that posted averages added a "disclaimer of sorts," stating that the survival statistics for many types of cancers were compiled some time ago, making them a bit dated.  In addition, the website editors wrote that patients should keep in mind that five-year survival statistics take at least five years to compile, meaning by the time the statistics are published at least five years have passed. 

    To put the "datedness" of cancer survival statistics in perspective, as I understand it for colon cancer, in 2000, there were at most one or two drugs used to treat the disease.  Today 12 years later there are at least a dozen with two just approved in 2012.  Therefore, given the efficacy of these drugs, which admittedly isn't perfect, and other treatments used today, if a five-year survival study ended in 2012, I'm sure you can see how those statistics would result in worse survival rates than are actually occurring.  Please understand these are conclusions I have reached after reading about survival statistics and studying how statistis in general are compiled.  In addition, your husband is an individual and statistics are compiled using thousands and indicate general trends and are therefore largely not applicable to any one individual. 

    Lastly, please check your previous post as I replied with some information regarding SSDI that you might find helpful.  Furthermore, I strongly urge you to look into the insurance exchanges that are a part of the Affordable Care Act (Obamacare) wihile pursuing your Medicaid coverage as well. 

    Again, I am sorry you're facing this horrible disease, but remember you're facing it together. 

    Fair winds and following seas to you and your husband and remember the people on this board are here to support you.

     Rick

  • gizzyluv
    gizzyluv Member Posts: 143
    KathiM said:

    Also, since it seems it would help....

    My beau and I are visiting the Western (wailing) Wall of the old synagogue in Israel at the end of the month.  If it is ok....I will post Jason's (and yours)

    name there...a friend of mine did that for me, the December after I was dx'ed....I always thought it was part of my help....*grin*....let me know if it's ok!

     

    Hugs, Kathi

    Absolutely!

    It is absolutely ok for you to do that! The only thing that would make it better is if you snap a picture of it for us! =) And thank you so much for sharing your story! It's that kind of stories that are keeping me going right now. I talked to my son Brandon on the phone a little while ago & he was telling me about a friend of his girlfriends family who had Stage 4 Prostate Cancer that had spread to his lymph nodes & even into his bone marrow....that was almost 5 years ago! The man is going to run a marathon this upcoming weekend....one of many I was told. I know it's all in Gods hands right now, so all we can do is continue to pray & wait....Thanks again for being here, it means so much to me. Take care & God Bless, Kris (by the way, my husbands name is Jason Roach....don't know if I put that in one of the other posts or not)