no surgery

They fkund 3 more spots on left chest wall so will not operate. What a waste of time and money.

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Damn!! Im sorry Jeff, I know
    Damn!! Im sorry Jeff, I know you must be very disappointed. So whats the plan to get you to surgery?
  • janderson1964
    janderson1964 Member Posts: 2,215
    jen2012 said:

    Damn!! Im sorry Jeff, I know
    Damn!! Im sorry Jeff, I know you must be very disappointed. So whats the plan to get you to surgery?

    There is no plan.

    There is no plan.

  • LindaK.
    LindaK. Member Posts: 506 Member
    Darn!

    I'm so sorry you got this news today.  It's so disheartening to hear.  One more hurdle to get over.  I can only imagine how you are feeling. 

    Linda

  • janderson1964
    janderson1964 Member Posts: 2,215
    LindaK. said:

    Darn!

    I'm so sorry you got this news today.  It's so disheartening to hear.  One more hurdle to get over.  I can only imagine how you are feeling. 

    Linda

    All I can think about right

    All I can think about right now is all of the time and money I wasted in the past three weeks.

  • devotion10
    devotion10 Member Posts: 623
    I can feel your devastation at this news Jeff ...

    you have had so many emotional highs and lows here lately.

    I do not know if another opinion is wise regarding surgery or if the general consensus will be that it is not in your best interest to do surgery on the lungs with evidence of systemic cancer elsewhere. But, perhaps you should continue to seek other opinions.

    I assume that the suggestion will be to treat your cancer as a chronic condition with chemotherapy and get yourself into periods of remission while still enjoying a quality of life. Remember, the longer you can achieve this, the greater the chance new and different treatment options will become available to you.

    You have spoken here of your faith which I know must be surely tested during a time such as this ... dig deep in your heart to what sustains you.  Hold on.

    Peace. ~ Cynthia

  • jen2012
    jen2012 Member Posts: 1,607 Member

    All I can think about right

    All I can think about right now is all of the time and money I wasted in the past three weeks.

    No use looking back! It is
    No use looking back! It is what it is...one day at a time...and all of those other stupid things we say. Oh and cancer sucks!! Really really sucks. Someone who has fought this for as long as you have should get a break!

    How have you tolerated folfox and folfiri in the past? When do you see the onc?

    You know you have many prayers and positive thoughts coming from us.
  • annalexandria
    annalexandria Member Posts: 2,571
    Oh Jeff.

    I hardly know what to say.  F'ing cancer.  I can't imagine the emotions right now, esp with all the ups and downs of the last few weeks.

    I guess all I would wonder is this...do you feel like you are in the most experienced hands possible?  Is there any chance a different surgeon might take a more aggressive approach?  I ask this because someone I know who was in a somewhat similar situation had to go to three surgeons before finding one who would operate on her.   And it was successful, at least in the sense that she is still here three years later, although still fighting this horrible disease.

    I feel like chest wall mets must be "drop" mets, as opposed to systemic, so it seems like surgery would still make sense.  If they can take up to 100 tumors out of a person's lungs, why not remove these if they are accessible?  I don't get it.

    I'm just so sorry.  I hope there can be some more hopeful news down the road.

     

  • janderson1964
    janderson1964 Member Posts: 2,215
    jen2012 said:

    No use looking back! It is
    No use looking back! It is what it is...one day at a time...and all of those other stupid things we say. Oh and cancer sucks!! Really really sucks. Someone who has fought this for as long as you have should get a break!

    How have you tolerated folfox and folfiri in the past? When do you see the onc?

    You know you have many prayers and positive thoughts coming from us.

    Thry were both hard on me and

    Thry were both hard on me and I see the onc tuesday. I cant wait.

  • janderson1964
    janderson1964 Member Posts: 2,215

    Oh Jeff.

    I hardly know what to say.  F'ing cancer.  I can't imagine the emotions right now, esp with all the ups and downs of the last few weeks.

    I guess all I would wonder is this...do you feel like you are in the most experienced hands possible?  Is there any chance a different surgeon might take a more aggressive approach?  I ask this because someone I know who was in a somewhat similar situation had to go to three surgeons before finding one who would operate on her.   And it was successful, at least in the sense that she is still here three years later, although still fighting this horrible disease.

    I feel like chest wall mets must be "drop" mets, as opposed to systemic, so it seems like surgery would still make sense.  If they can take up to 100 tumors out of a person's lungs, why not remove these if they are accessible?  I don't get it.

    I'm just so sorry.  I hope there can be some more hopeful news down the road.

     

    I got six disc of the scans

    I got six disc of the scans from the hospital to shop around for a surgeon. Any one have any agressive thry know of that might take me on.

  • devotion10
    devotion10 Member Posts: 623

    I got six disc of the scans

    I got six disc of the scans from the hospital to shop around for a surgeon. Any one have any agressive thry know of that might take me on.

    This may sound sort of obsessive, but ...

    what if you assembled: 1) a document detailing your diagnosis, history, general physical health, etc., 2) a statement of the surgical treatments you are potentially seeking, and 3) your most recent scans and sent it to every major NCI hospital colorectal surgeon department heads?  

    You could get the names easily of the head of the departments by going online and then even make a phone call to the departments alerting them that you would be sending this information to Dr. X.  

    You could emphasize that you have no time to waste and thus you would appreciate consideration at their earliest convenience.

    Just an idea ... 

    Peace. ~ Cynthia

  • johnnybegood
    johnnybegood Member Posts: 1,117

    This may sound sort of obsessive, but ...

    what if you assembled: 1) a document detailing your diagnosis, history, general physical health, etc., 2) a statement of the surgical treatments you are potentially seeking, and 3) your most recent scans and sent it to every major NCI hospital colorectal surgeon department heads?  

    You could get the names easily of the head of the departments by going online and then even make a phone call to the departments alerting them that you would be sending this information to Dr. X.  

    You could emphasize that you have no time to waste and thus you would appreciate consideration at their earliest convenience.

    Just an idea ... 

    Peace. ~ Cynthia

    so sorry

    jeff for this latest set back i dont post much but i am keeping up with your latest battle,just please keep the faith no matter where your journey takes you....Godbless...johnnybegood

  • Phil64
    Phil64 Member Posts: 838

    so sorry

    jeff for this latest set back i dont post much but i am keeping up with your latest battle,just please keep the faith no matter where your journey takes you....Godbless...johnnybegood

    Jeff, I'm really saddened to

    Jeff, I'm really saddened to read this update. JBG is right. No matter what keep the faith. And Cynthia offers some good ideas. Look for all options. Surgery and/or chemo are both possible options still. I certainly don't understand this horrible disease but I also believe my vision/perspective is limited. I believe that there is a bigger picture where the trials we endure today will be seen in a different light. Love, light, strength, peace are what I pray for you today. Blessings to you and your family. 

    Sincerely,

    Philip

  • Luckygirl2
    Luckygirl2 Member Posts: 308
    thinking of you

    Prayers coming your way.

     

    Debbie

  • tanstaafl
    tanstaafl Member Posts: 1,300 Member
    the Nth surgeon

    That damned spot count and extrahepatic disease business for resection is treacherous but highly variable. This moment iswhere the fight true starts.  Our job is to find some Babe Ruth, perhaps only locally known, playing in Pittsburg, Europe, Asia, So America or where-ever if necessary.  Hopefully you can find a thoracic team like Rolle that can deftly handle more spots than your drs so far.

    Our reaction to this Dr No situation was to start a rolling barrage of visits, international emails, and opinions, SBRT (for us, but whatever possibilities) vs surgery.  Local 1st line of oncolgists were slavering over chemo even though they only expected a few months net benefit for a big para aortic mass; the first 3 surgeons were No, No and No.  Probably too big as CT imaged for fully destructive radiation, the locals were still interested IGRT - worse, the true size was a congomerated cluster twice as large as imaged.    

    Step 1 Loaded wife to with immunochemo until as near to surgery as possible.  I found a number of Japanese papers to support 5FU based drugs immediately before/during/after CRC surgery for safety and net benefit.

    Step 2. Find a surgeon willing to credit the possible anti-metastasis benefits of cimetidine, celecoxib, oral chemo, etc AND use it as close to surgery as possible.  Because of the location difference (lungs), wound risk and chemo timing may be a little different, but don't fooled by the ultraconservative cover-myself numbers like 3-6 weeks.

    Step 3. get stamped for refusals on radiation and "their" chemo for surgeon's file (s/he was well informed and turned them down). 

    Step 4. implement LEF (pre)surgery protocols including wound repair nutrition, remove excess vit E etc for bleed potential, get to satisfactory PT and PTT. 

    Step 5.  Day after surgery my wife was fit enough for immuno oral chemo.  

    The average doctors stay home and suck or break wind.  And that's ok, every one needs to honor their limits.  It's the hexing or discouragement that their best is everyone else's limit too, that boils my blood.

  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Jeff,

    Sorry to hear the disappointing news. I wish you to have the strength to go on and find the best possible solution for you.

    Waiting to hear some better news from you,

    Laz

  • Cathleen Mary
    Cathleen Mary Member Posts: 827
    tanstaafl said:

    the Nth surgeon

    That damned spot count and extrahepatic disease business for resection is treacherous but highly variable. This moment iswhere the fight true starts.  Our job is to find some Babe Ruth, perhaps only locally known, playing in Pittsburg, Europe, Asia, So America or where-ever if necessary.  Hopefully you can find a thoracic team like Rolle that can deftly handle more spots than your drs so far.

    Our reaction to this Dr No situation was to start a rolling barrage of visits, international emails, and opinions, SBRT (for us, but whatever possibilities) vs surgery.  Local 1st line of oncolgists were slavering over chemo even though they only expected a few months net benefit for a big para aortic mass; the first 3 surgeons were No, No and No.  Probably too big as CT imaged for fully destructive radiation, the locals were still interested IGRT - worse, the true size was a congomerated cluster twice as large as imaged.    

    Step 1 Loaded wife to with immunochemo until as near to surgery as possible.  I found a number of Japanese papers to support 5FU based drugs immediately before/during/after CRC surgery for safety and net benefit.

    Step 2. Find a surgeon willing to credit the possible anti-metastasis benefits of cimetidine, celecoxib, oral chemo, etc AND use it as close to surgery as possible.  Because of the location difference (lungs), wound risk and chemo timing may be a little different, but don't fooled by the ultraconservative cover-myself numbers like 3-6 weeks.

    Step 3. get stamped for refusals on radiation and "their" chemo for surgeon's file (s/he was well informed and turned them down). 

    Step 4. implement LEF (pre)surgery protocols including wound repair nutrition, remove excess vit E etc for bleed potential, get to satisfactory PT and PTT. 

    Step 5.  Day after surgery my wife was fit enough for immuno oral chemo.  

    The average doctors stay home and suck or break wind.  And that's ok, every one needs to honor their limits.  It's the hexing or discouragement that their best is everyone else's limit too, that boils my blood.

    Jeff, I am sorry that you

    Jeff, I am sorry that you have yet more to deal with....certainly isn't a fair disease. As others have said, because the doc doesn't have a plan doesn't mean that you can't. Getting 6 discs of scans is a great sign to me that you still heave plenty of fight and won't settle for a limited opinion. 

    I have been treated at MGH. Although I have been lucky enough not to need a super aggressive approach, many I have met there have and have been quite pleased with the care and the willingness to look the through a wider lens. My care there is excellent.

    Prayers and best wishes as you discern the next steps and for the boldness to move forward.

    hugs,

    Clare

  • serenity101
    serenity101 Member Posts: 82
    So disappointing

    A last-minute "no" is the worst kind. I hope you find the doctors who can give you the best possible outcome.

  • annalexandria
    annalexandria Member Posts: 2,571

    I got six disc of the scans

    I got six disc of the scans from the hospital to shop around for a surgeon. Any one have any agressive thry know of that might take me on.

    The surgeon who did the work for this woman I know

    is at Georgetown University Hospital, in Washington DC.  But I'm sure that he's not the only one who is willing to take on cases that are challenging.  I think you should put this up at the Colon Club.  There are a lot of east coasters there who may have some good ideas.

    I believe it was Brownbagger over there who said you want a "cowboy" for your surgeon, someone who will recognize that the dice needs to be rolled while there is still time.

  • alexinlv
    alexinlv Member Posts: 194
    I am so sorry! I've been

    I am so sorry! I've been praying and hoping for the best for you! Keep up the good fight.  You are an inspiration.  My prayers are with you. 

  • lilacbrroller
    lilacbrroller Member Posts: 412
    alexinlv said:

    I am so sorry! I've been

    I am so sorry! I've been praying and hoping for the best for you! Keep up the good fight.  You are an inspiration.  My prayers are with you. 

    curative, comforting, or life prolonging

    Geez. I'm so sorry for you. I've had less than stellar experiences with surgeons myself, and have come to the conclusion that they fall into two categories. There are those that believe that most Stage IVs are hopeless cases and aren't worth the time and effort because they believe the final outcome will be the same - these surgeons will only operate if they believe that their work will cure the patient (very rare cases) or will make them more comfortable if debulking is needed or to obstruct a blockage.  Then the other category believes in prolonging life in as many cases as would benefit, knowing full well that a complete cure is not likely but that extending a person's life through a series of interventions is still OK and worth trying. How do you find these people??

    I had an experience where I was sitting in a surgeon's examining room and overhead his conversation with my oncologist, and I remember him saying the word "life prolonging" in a really sarcastic way, as if he couldn't understand why I would want this and why he should waste his time on it.  I gave  him an earful after I heard this, and his explanation was that the "data" (based on people 50 years and older, which I am not) showed low life expectancy for cases like mine, so why bother? (I was pissed, needless to say. What a total putz!) 

    I totally understand the reality of my case, yet I read stories of people on this board and colon club who do find surgeons in the life prologing category who do perform piecemeal removal of their mets, in liver and lungs and other places, and these lucky souls have lived many extra years because of these staged interventions - combination of multiple surgeries, chemo, radiation, liver pumps, RFA, VATS, etc.  Cases worse than mine, cases better. I copy down names of doctors and clinics these lucky folks use and when my tumor load shrinks I'll be callin'. 

    I wish that clinics and doctors would be up-front as to their positions on curative surgery, before you pay for a consultation.  If they're in the former category, don't even bother talking to them.

    Good luck shopping around. If you find a good surgeon who will take your case, please post !!

    Karin Laughing