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

2

Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    pm me if you are interested in my germany experiences

    i had similar extensive mets, removab preop has benefits i think, but i would let a doctor comment, its a good question.

    removab is experimental and expensive but it worked on me.

    your hubby has not had chemo, a huge plus in immunotherapy based strategies from what i have learned.

    who am i, just a stage 4 cancer free almost with no systemic chemo.

    12 weeks, 120K and you will know, conventional is always a valid option. the timing is your choice.

    if experimental fails, then chemo, radio surgery are valid therapies.

     an opinion from hallwang would be interesting !!

    maybe before surgery, see my blog for contact details of clinic.

    so sorry for your news, meditation now more than ever.

    hugs,

    pete

    ps petertrayhurn.blogspot.com.au

    pps i will remember you in my prayers, godbless! smile it will help your hubby. stay focused and dont panic. breathe, deep and slow.

    youl find the best path i pray.

  • John23
    John23 Member Posts: 2,122
    gizzyluv -

    Re:

    “Jason's dr. is a highly renowned colorectal cancer surgeon, so I do trust what he believes should be done first.”

     

    My first surgeon (2006) was said to be the best of the best. My second surgeon (2011) was chief of staff, taught laparoscopic surgery, was well respected for his knowledge, etc etc. My last surgery (2012)was due to all the mistakes made in both my 2006 and 2011 surgeries.

     

    Get other opinions from colorectal surgeons that are not of the same group or organization. It is very important that you do so!!

     

    Losing parts of the digestive tract complicates all of life; you do not want to put life in one person’s hands with the assumption that only that one individual knows best.

     

    Get other opinions ASAP!

     

    Hoping better health comes soon!

     

    John

     

     

     

  • Dyanclark
    Dyanclark Member Posts: 296
    So sorry

    For now just think positive.  People can do without colon and I know two cases where Dr. gave someone a new stomach.   

    My husband & I have only been married 5 1/2 years and second year of our marriage we found out he had colon cancer.  

  • Brenda Bricco
    Brenda Bricco Member Posts: 579
    gizzyluv said:

    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)

    Kris, I am so sorry that you

    Kris, I am so sorry that you didn't get better news. I just want to say that you have to take things a "hurdle" at a time, this is a big fight. There were days that I couldn't even take things a day at a time and had to go hour by hour. Your despriptions of feeling like you are in a bad dream or drowning is exactly the way I felt.

    There were a lot of things that had to happen for Dennis to get to NED... it was hurdle after hurdle and prayed for GOD to get us to where we needed to be. It seemed like so much and honestly impossible but it happened for us; I pray it happens for you and Jason.

    We are here to listen, answer any questions we can and pray. It's hard for me to pray when I am really scared so don't be afraid to ask others to pray for you if you feel numb or frozen.

    GOD bless you and Jason

    Brenda

  • Brenda Bricco
    Brenda Bricco Member Posts: 579
    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

    Could I get you to add my husband and I to the wall?

    :)

  • annalexandria
    annalexandria Member Posts: 2,571
    Just to add a little positive thought here,

    to all of the the other good advice you've been given...once the doctor gets in there and can take a look, it may not be as bad he thinks.  I've had five surgeries, and on the 3rd go-round, I was told that it was going to be strictly palliative in nature.   My surgeon said there was too much cancer, and all he could do was deal with the one tumor that was bleeding, close me back up, and hope chemo would work.  But once surgery was actually underway, he found that the scan had been misleading, and there was less cancer than he thought.  He was able to get it all.  That was almost 2 1/2 years ago and I'm still around (in fact, NED at the moment).   So don't lose hope yet...scans can be difficult to interpret (even for seasoned docs), and things may turn out better than you think.  And there are quite a few of us on this forum who are proving the whole 2 year thing wrong as well.  Stay strong and tell your husband we're rooting for him~Ann Alexandria

  • gizzyluv
    gizzyluv Member Posts: 143
    Trubrit said:

    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. 

    I did see the cancer....

    I did see the cancer on the CT Scan, or I should say I "saw" what the dr. was pointing to. Did I understand what I was seeing? Not at all. I am just leaving Jason in Gods hands, there's no better hands to be in! And I also truly believe that God will be in the operating room, guiding the surgeons hands....I will NEVER give up hope, never. I know that anything is possible through God....Thanks for being here for us....Take Care & God Bless, Kris

  • gizzyluv
    gizzyluv Member Posts: 143

    Kris, I am so sorry that you

    Kris, I am so sorry that you didn't get better news. I just want to say that you have to take things a "hurdle" at a time, this is a big fight. There were days that I couldn't even take things a day at a time and had to go hour by hour. Your despriptions of feeling like you are in a bad dream or drowning is exactly the way I felt.

    There were a lot of things that had to happen for Dennis to get to NED... it was hurdle after hurdle and prayed for GOD to get us to where we needed to be. It seemed like so much and honestly impossible but it happened for us; I pray it happens for you and Jason.

    We are here to listen, answer any questions we can and pray. It's hard for me to pray when I am really scared so don't be afraid to ask others to pray for you if you feel numb or frozen.

    GOD bless you and Jason

    Brenda

    Thank You

    Thank you for the kind words. Please do keep Jason in your prayers. Take Care & God Bless, Kris

  • BusterBrown
    BusterBrown Member Posts: 221
    I second the second opinion...

    Like Trubrit has said, take it one day at a time. I had Stage IV colon cancer with mets to my liver. I got the 2 year speech, that was in Dec.2004, today I'm in remission.  If I were Jason, I'd get a second opinion, I understand Vanderbilt has a great hospital, I'm certain they have a CRC surgeon that can do the job. Given your husband's circumstances I'm sure Vandy would make an acception and get you in quickly to see a qualified surgeon. Scans and files are easy to transfer, doctors and hospitals do it all the time.   The Mayo Clinic reviewed my case 5 days after my local doctor gave me the news. When I was first diagnosed, I thought I had to have everything done right away. After talking to a doctor friend he told me to take my time (a week or two) and find the right surgeon and hospital, and that's exactly what I did, again that was 8 years ago. Best advice I have ever got.  I know it's hard, but take a deep breath, you have some time, do your homework and make a good decision. 

    Prayers to you and Jason...

    Buster...

  • renw
    renw Member Posts: 282
    If the tumour is obstructing

    If the tumour is obstructing the colon, and it is chronic, there is little option other than surgery. If there is no immediate danger, other therapies may be more appropriate first. I am in a similar boat with a large primary tumour. I have been given 2 months, but 4 months later still here and fitter than I have ever been and the primary has shrunk a little. A lot depends on the size of mets as well, often they are more dangerous than the primary tumour itself. Second opinion is a must. in fact I had 8 second opinions now. :) You may be surprised about the various opinions you end up with. I was, and this enabled me to make a more informed decision about my treatment.

  • Brenda Bricco
    Brenda Bricco Member Posts: 579
    gizzyluv said:

    Thank You

    Thank you for the kind words. Please do keep Jason in your prayers. Take Care & God Bless, Kris

    I have been praying for you

    I have been praying for you both tonight...may you feel lifted up in prayer.

  • KathiM
    KathiM Member Posts: 8,028

    Could I get you to add my husband and I to the wall?

    :)

    Yes!

    I planned on a generic "CSN warriors"...but, anyone who wants, I will add their name...

     

    Kris, consider Jason's (and your) name on it!!! (And I WILL snap a pic, if I am allowed...*grin*...there is a side for men, and a side for women...)

     

    (We don't go until the 22 February)

     

    Hugs, Kathi

  • tanstaafl
    tanstaafl Member Posts: 1,302 Member
    extra options

    Cimetidine, PSK, Celebrex before and after surgery and chemo are things you should check out the stories on.  Each one might be worth a year,  two or three if surgery can get enough.

  • wawaju04976
    wawaju04976 Member Posts: 316
    KathiM said:

    Yes!

    I planned on a generic "CSN warriors"...but, anyone who wants, I will add their name...

     

    Kris, consider Jason's (and your) name on it!!! (And I WILL snap a pic, if I am allowed...*grin*...there is a side for men, and a side for women...)

     

    (We don't go until the 22 February)

     

    Hugs, Kathi

    Kathi, could you add me to

    Kathi, could you add me to the list...Judith Waugh? Thank you!!!

  • tachilders
    tachilders Member Posts: 313
    I am 46 and had a similar

    I am 46 and had a similar diagnosis in June of this year.  My colon tumor was not as big as your husband's tumor, but it had almost completely blocked my colon.  They attempted to remove it by surgery, but the colorectal surgeon said he could not remove it due to the fact that it had spread outside the colon and was too close to other vital things like my spine, blood vessels, bladder, etc...  My surgery was done in Kalamazoo, MI at the local hospital, so I have wondered if a larger cancer center that specialized in cases like mine could have done more with that initial surgery.  As it is, they looked around, biopsied some tumors from my peritoneal cavity (that were colon cancer as well), performed a colostomy, and sewed me back together.  I have been told my that surgeon and at least 2 oncologists that I am not a candidate for surgery due to my widespread metastases (liver, lungs, lymph nodes, peritonal cavity), so I have been doing systemic chemo since July (first was FOLFOX + Avastin, now I am on just 5FU + Avastin).  My disease has been stable/slightly improving since starting chemo, but I also have a pretty short window w/out some other kind of therapy, which is why I am considering following Pete's journey and possibly going to Hallwang in Germany later this year. 

    Now, the good news.  On a day to day basis, I feel perfectly normal 99% of the time.  I have handled the chemo well, and it barely interferes with my life, except for 1/2 day every 2 weeks.  The colostomy is not that bad to deal with either.  I am lucky that I have a loving wife, 6 kids and 2 dogs that take very good care of me.  I have come to accept that I will likely not be here as long as I had planned, so I am trying to enjoy my time as much as possible.  I am in no way giving up, but I have changed my outlook on day to day life, and have also started planning for what happens when I am gone.  Once you get over the initial shock, you will have to accept what has happened and then make a decision how to move forward.  You can't go back and change the past, so you have to learn to deal with your new reality.  It sounds like you have a strong faith, so that may help you going forward.  Very sorry to hear about your husband's diagnosis, and wish both of you all the best.  I second the recommendations to get a second or third opinion PRIOR to the surgery, as this surgery could really impact your husband's treatment success.

    Tedd

  • hippiechicks
    hippiechicks Member Posts: 509
    Hi Kris,
    I know how scary

    Hi Kris,

    I know how scary this is right now...I too was diagnosed with surgery as my first and only option.  I was completely blocked so did not even know what was happening as I was still dopy from the colonoscopy when the emergent surgery took place.  If Jason was not taken to immediate surgery to save his life, then there is absolutely time for a second opinion.  I agree with all the others here that a second or third even is really priority right now for you.  You will be surprised how quickly they can get Jason in be seen as they are all aware of the ergency in these situations.

    I will tell you this, I have had 5 opinions thus far.  My first and my last were the same and the most hopeful and made the most logical sense.  Guess which path I am going with. 

    Have you ever had a conversation play over and over in your head? After one of my opinions this happend to me. It was an opinion I could not wait to hear as it was from one of the top 5 cancer centers in the country. I was putting my life in their hands and certainly they would know how important that was. We sat intently listening to the doctor's every words, listening to statistics and outcomes and what to expect. Wanting to hear every bit of information and use it all wisely.  My news from this doctor was grim, very grim.  My husband and I in shock, me in tears, and trying to figure how we would tell our children. How were we going to explain that I was not going to be around for graduations, weddings, grandchildren and possibly next Christmas?

    Well, I have realized when something keeps popping in your head and making you feel uneasy ... it is because it is not correct information and you are having trouble processing it because something is off.  Well, my something came to me after a few days of replaying what this doctor said...of the hour and a half consultation he had said 6 very important, words that we had both overlooked at first ... "I DID NOT READ YOUR FILE"  Although it had been in his hands for a week ... he had not read it.  So, sometimes even the "best of the best" are not the correct option for you and your situation. This doctor was not necessarily incorrect in his view, he was however lumping my stage IV statistics as just that...a statistic.  But, we are all individuals and may have other options, one that may make more logical sense for us.    

    My angels were telling me this information was incorrect for me ... I am sure.

    I also had 2 CT scans read incorrectly.  My second opinion at that time was not  soon enough to save my colon, but DID save my life.  I do not wait any longer or put all my trust in one facility. I too stress what John posts, it is important for you to go outside the group you received the first opinion from. Very important.

    I totally agree with the previous posts regarding this surgeon not talking to Jason directly.  I have never heard of such a thing, ever, even my children are spoken to by the doctors as individuals. In fact they will not even speak to me now about my adult children nor the nurses. This is very very questionable behavior for a "best of the best" surgeon. And he showed you his CT scan alone? IDK...something does not seem right there. It almost sounds a bit like a scene from a drama.

    I am keeping you both in my prayers and hoping you find your correct path.

     

     

  • KathiM
    KathiM Member Posts: 8,028

    Kathi, could you add me to

    Kathi, could you add me to the list...Judith Waugh? Thank you!!!

    Done!

    Hugs, Kathi

  • annalexandria
    annalexandria Member Posts: 2,571
    tanstaafl said:

    extra options

    Cimetidine, PSK, Celebrex before and after surgery and chemo are things you should check out the stories on.  Each one might be worth a year,  two or three if surgery can get enough.

    Would 2nd the cimetidine/Tagamet...

    forgot to mention that I took that for a week before and a week after my last surgery, which may (or may not-but it can't hurt) have contributed to my being NED this last year.  AA

  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Hi Kris,
    I know how scary

    Hi Kris,

    I know how scary this is right now...I too was diagnosed with surgery as my first and only option.  I was completely blocked so did not even know what was happening as I was still dopy from the colonoscopy when the emergent surgery took place.  If Jason was not taken to immediate surgery to save his life, then there is absolutely time for a second opinion.  I agree with all the others here that a second or third even is really priority right now for you.  You will be surprised how quickly they can get Jason in be seen as they are all aware of the ergency in these situations.

    I will tell you this, I have had 5 opinions thus far.  My first and my last were the same and the most hopeful and made the most logical sense.  Guess which path I am going with. 

    Have you ever had a conversation play over and over in your head? After one of my opinions this happend to me. It was an opinion I could not wait to hear as it was from one of the top 5 cancer centers in the country. I was putting my life in their hands and certainly they would know how important that was. We sat intently listening to the doctor's every words, listening to statistics and outcomes and what to expect. Wanting to hear every bit of information and use it all wisely.  My news from this doctor was grim, very grim.  My husband and I in shock, me in tears, and trying to figure how we would tell our children. How were we going to explain that I was not going to be around for graduations, weddings, grandchildren and possibly next Christmas?

    Well, I have realized when something keeps popping in your head and making you feel uneasy ... it is because it is not correct information and you are having trouble processing it because something is off.  Well, my something came to me after a few days of replaying what this doctor said...of the hour and a half consultation he had said 6 very important, words that we had both overlooked at first ... "I DID NOT READ YOUR FILE"  Although it had been in his hands for a week ... he had not read it.  So, sometimes even the "best of the best" are not the correct option for you and your situation. This doctor was not necessarily incorrect in his view, he was however lumping my stage IV statistics as just that...a statistic.  But, we are all individuals and may have other options, one that may make more logical sense for us.    

    My angels were telling me this information was incorrect for me ... I am sure.

    I also had 2 CT scans read incorrectly.  My second opinion at that time was not  soon enough to save my colon, but DID save my life.  I do not wait any longer or put all my trust in one facility. I too stress what John posts, it is important for you to go outside the group you received the first opinion from. Very important.

    I totally agree with the previous posts regarding this surgeon not talking to Jason directly.  I have never heard of such a thing, ever, even my children are spoken to by the doctors as individuals. In fact they will not even speak to me now about my adult children nor the nurses. This is very very questionable behavior for a "best of the best" surgeon. And he showed you his CT scan alone? IDK...something does not seem right there. It almost sounds a bit like a scene from a drama.

    I am keeping you both in my prayers and hoping you find your correct path.

     

     

    When I went to hospital

    When I went to hospital because I was having trouble breathing (blood clots in lungs)  they started to look for  why??   Scans showed the mass in my abdomen,  they thought it was ovaries ....my colon was completely blocked....they did a colonoscopy and took a sample,  that came back precancerous.    So, they went back to their Ovarian mass theory.   I had to stay in hospital for a month before a surgeon would operate on me, waiting for the blood clots to settle.  for the entire month I was completely blocked  had a N.G. tube sucking stuff out of my stomach,  and on T.P.N. for nutrition.  When they finally went and did the surgery they were surprised to find it was colon cancer,  tumor the size of a fist with spread to ovaries etc.   My onc. gave me the same 2 years maybe prognosis.   I had two surgeons, one for colon and other gyno..   I've been doing chemo. on and off to keep things at bay.  I was diagnosed in 2010.     The surgeon isn't really going to know what is going on in there till he physically does the surgery.    They were able to put my colon back together during the surgery, so I didn't need the bag I was anticipating I would need.   

  • gizzyluv
    gizzyluv Member Posts: 143

    Would 2nd the cimetidine/Tagamet...

    forgot to mention that I took that for a week before and a week after my last surgery, which may (or may not-but it can't hurt) have contributed to my being NED this last year.  AA

    I'm confused....

    Hi! As I said before, I'm new to all of this. I do know what Tagamet is, but am confused as to how that could have contributed to you being NED the past year? I'm definitely curious!....Thanks for your help! Kris