advice needed

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janderson1964
janderson1964 Member Posts: 2,215 Member

I got the results from my mri today. not what i was expectiog. the test revealed a second spot on my liver an the one though to be on my lung is on my chest wall for a total of 2 on my chest wall. He said surgey is not an option at ths tme and should do chemo to see if that changes things. i find this unacceptable. They could use rfa n the live and sbrt n the rib cavity. i am seeing my oncoocgist to start chemo but will be actively seeking other options.

I am picking up th film tomorrow and am ready to start shoppit around. any advice would be appreciated.

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

    I think chemo is gonna benefit you a couple of ways. It will control the growths and buy you time to explore your surgery options.

    What do they mean when they say chest wall? Surface of the lungs, pleura, ribs? And what kind of chemo do they recommend?

    Im rooting for you man, a big time!

    Laz

  • devotion10
    devotion10 Member Posts: 623 Member
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    Something here might be helpful or at least provide you with

    some potential questions to ask for a second opinion.

    Peace. ~ Cynthia

     

    Link to Johns Hopkins: Chest Wall Tumors

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/lung_cancer_program/what_is_lung_cancer/chest_wall_tumors.html

     

    From the above page you can also link to: Treatment

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/lung_cancer_program/prevention_diagnosis_treatment/index.html

     

    And link to: Surgery

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/lung_cancer_program/prevention_diagnosis_treatment/surgery.html

  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    Is the spot small?

    Is the spot on the liver small?  Did he say why surgery wasn't an option?

    I would go for RFA if I could.  I have too many, I now have seven on my liver, but I don't see why you can't!  I am out of chemo's now, I've been through them all, and we just went back to Oxi/Avastin/xeloda, although it worked the first time I did it in 2010, when I did it late in 2012 it no longer worked, which is when I went to Irinotecan and Erbitux.  Then I went to Irenotecan and Vectibux which worked until December.  But that quit working so can only hope that maybe thsee tumors are from the second new primary that was in the sigmoid and the Oxi/Xeloda/Avastin will work once again.  I can only hope but expect it not to.

    If I could do RFA I would, if chemo's still works for you I know at Stanford they do TACE (I know from Pete's stuff that a person might think it's a therapy only available in Germany, but a lot of hospitals do it here, and one also might think it wasn't CHEMO since Pete makes it appear that he isn't into chemo, but it IS CHEMO that goes direct to the liver while they also cut off the oxygen to the tumors) the nice thing about TACE is that it doesn't go everywhere else in the body just to the liver where you need it.  I personally would go this route but since we don't know if chemo works on it for me anymore, it would be pointless to go through that since the chemo needs to work on the tumors.  They consider it a standard treatment for unresectable heptocellular carcinoma.  You might check into this as well as the RFA.

    Wishing you luck there.

    Winter Marie

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    Is the spot small?

    Is the spot on the liver small?  Did he say why surgery wasn't an option?

    I would go for RFA if I could.  I have too many, I now have seven on my liver, but I don't see why you can't!  I am out of chemo's now, I've been through them all, and we just went back to Oxi/Avastin/xeloda, although it worked the first time I did it in 2010, when I did it late in 2012 it no longer worked, which is when I went to Irinotecan and Erbitux.  Then I went to Irenotecan and Vectibux which worked until December.  But that quit working so can only hope that maybe thsee tumors are from the second new primary that was in the sigmoid and the Oxi/Xeloda/Avastin will work once again.  I can only hope but expect it not to.

    If I could do RFA I would, if chemo's still works for you I know at Stanford they do TACE (I know from Pete's stuff that a person might think it's a therapy only available in Germany, but a lot of hospitals do it here, and one also might think it wasn't CHEMO since Pete makes it appear that he isn't into chemo, but it IS CHEMO that goes direct to the liver while they also cut off the oxygen to the tumors) the nice thing about TACE is that it doesn't go everywhere else in the body just to the liver where you need it.  I personally would go this route but since we don't know if chemo works on it for me anymore, it would be pointless to go through that since the chemo needs to work on the tumors.  They consider it a standard treatment for unresectable heptocellular carcinoma.  You might check into this as well as the RFA.

    Wishing you luck there.

    Winter Marie

    I didn't ask about how big

    I didn't ask about how big the second spot was that just showed up but the first one is 21mm. Still manageable for RFA. In fact my surgeon said RFA would be an oprion if I didnt have the other 2 tumors in my chest cavity which doesn't make sense to me. It seems as though he is suddenly becoming one of these closed minded surgeons that doesn't want to deal with multiple spots. I am picking up the film today and seeing my formor oncologist tomorrow who is very open minded. I have been through the main chemos too. We just don't know if they will still be effective since I did them all as mop up after surgery so there was nothing to monitor. I guess you could say it was working at the time since each of my recurrences happened over a year after I finished treatments. I have looked into TACE and possibly SBRT for the chest cavity tumors. Ironically the hospital where my surgeon is at does FRA, TACE, and SBRT. I will see hwat my oncologist says tomorrow. I think it is a good idea to start chemo ASAP while I am trying to sort all of this out.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    lp1964 said:

    Dear Jeff,

    I think chemo is gonna benefit you a couple of ways. It will control the growths and buy you time to explore your surgery options.

    What do they mean when they say chest wall? Surface of the lungs, pleura, ribs? And what kind of chemo do they recommend?

    Im rooting for you man, a big time!

    Laz

    The report for the CT said

    The report for the CT said one spot was in the subplueral adjacent to the 11th right rib. The other is described as inferiorright posterior sulcus which to me means the sissure on the back side of the inferior right lobe. Keep in mind that scan was done without contrast so it wasnt real clear. The MRI might have clarified the location as not being on the lung.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    Something here might be helpful or at least provide you with

    some potential questions to ask for a second opinion.

    Peace. ~ Cynthia

     

    Link to Johns Hopkins: Chest Wall Tumors

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/lung_cancer_program/what_is_lung_cancer/chest_wall_tumors.html

     

    From the above page you can also link to: Treatment

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/lung_cancer_program/prevention_diagnosis_treatment/index.html

     

    And link to: Surgery

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/lung_cancer_program/prevention_diagnosis_treatment/surgery.html

    Thanks Cynthia. Johns Hopkins

    Thanks Cynthia. Johns Hopkins I s one of the first on my list. It is only about 4 hours from me. I had gotton a second opinion from Dr. Choti there several years ago about liver resection.

  • maglets
    maglets Member Posts: 2,576 Member
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    jeff

    Jeff i have no advice ....just wanted to say I am here and thinking about you a great deal....you seem to have clicked into full high gear.....this is a good thing.....sending love and a hug

    maggie

  • zx10guy
    zx10guy Member Posts: 273 Member
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    Since you're looking at

    Since you're looking at Hopkins for a second opinion, please also give Dr. Mark Fraiman a call.  He specializes in liver and pancreatic cancers.  I consulted with him under the recommendation of my CRC surgeon at the start of this messed up journey when a couple of lessions turned up in my CT scan prior to surgery.  I can't say enough kind and good things about Dr. Fraiman.  His concern about my situation was geniune and he went above and beyond what I had expected from any doctor who having only met me once for this consult.  He re-arranged his holiday travel plans to make it possible for him to be there during my CRC surgery to do the biopsies of the two areas of my liver.  And if need be was ready to do what was needed to perform a resection.  Fortunately, I didn't need a liver resection as the biopsies came back negative.

    Because of what Dr. Fraiman did for me, he will always have a special place in my heart.

  • PatchAdams
    PatchAdams Member Posts: 271
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    Type of surgeon?

    So the surgeon reading the scan...... liver surgeon or general?  Possibly out of his area of expertise. 

    You know I am against RFA unless there is NO chance of surgery being done EVER.  I don't understand why they can't get your liver cleared up and then work on the lung wall spots. 

    You KNOW your onc is going to push chemo. That's his job.  I'd be seeking more opinions immediately and before they being chemo.  You want to be at the top of your game, best health possible prior to other tx's. 

     

    Patch

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    Type of surgeon?

    So the surgeon reading the scan...... liver surgeon or general?  Possibly out of his area of expertise. 

    You know I am against RFA unless there is NO chance of surgery being done EVER.  I don't understand why they can't get your liver cleared up and then work on the lung wall spots. 

    You KNOW your onc is going to push chemo. That's his job.  I'd be seeking more opinions immediately and before they being chemo.  You want to be at the top of your game, best health possible prior to other tx's. 

     

    Patch

    He is a liver surgeon. One of

    He is a liver surgeon. One of the best in the country. He alreadyndi 3 liver resections on me. Thats what makes this so shocking. The oncologist I am seeing is very good on seeking out surgical options first. I am on the way to get 6 copies of the scan so I can shop it around.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    He is a liver surgeon. One of

    He is a liver surgeon. One of the best in the country. He alreadyndi 3 liver resections on me. Thats what makes this so shocking. The oncologist I am seeing is very good on seeking out surgical options first. I am on the way to get 6 copies of the scan so I can shop it around.

    You are a strong, smart guy, Jeff,

    and it sounds to me like you are going to find an answer to this set-back.  Keep pushing forward, we'll be right behind to help hold you up.

    Sending hope and love~AA

  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    He is a liver surgeon. One of

    He is a liver surgeon. One of the best in the country. He alreadyndi 3 liver resections on me. Thats what makes this so shocking. The oncologist I am seeing is very good on seeking out surgical options first. I am on the way to get 6 copies of the scan so I can shop it around.

    Multiple spots

    I don't get this attitude they have when it shows up in the lungs.  I've had mine in the lungs since first diagnosed.  I've been lucky that my onc, calls them, just spots, no guarantee that they are tumors unless we biopsy and no reason to biopsy.  When one grows and then shrinks, "well, it must of been an infection going on the time of that scan", hence I've always qualified for surgeries because they aren't called cancer tumors by my onc. Then one day I get a scan and the surgeon for my colon tumor that my onc recommended decided that the lung tumors were lung cancerous tumors and therefore he wasn't doing the sigmoid colon tumor removal.  WTH??? Anyway, cried, pleaded, demanded and got the surgery anyway.

    i would NOT have been alive these past 4 years without the first and on going surgeries.  Four extra years because of the surgeries, and then you have all these surgeons and onc's that refuse to do it if you have lung mets.  Because then we are too EXPENSIVE to keep alive is that it?  If they could give their wife or child four extra years from doing surgeries would they? Is it well, the lung tumors will kill them anyway so what's the point?  I don't get why they decide on how long we get to live because of lung tumors.

    Anyway, you go, you find that surgeon!!

    Winter Marie

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
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    better radiation and chemo with surgery?

    Jeff, if you're going for short range radiation near the surface, you especially might check out proton therapy.  It's only at a handful of centers but the big advantage is that the protons deposit most of their energy in the target tumor.  No "exit wound/path" radiation load. 

    Proton therapy plus chemo  

    How close in time will aggressive surgeons operate on liver to treatments with xeloda only (days or weeks, particularly with no Avastin)?  Bleed potential may worry the surgeons far beyond your optimal net utilities to protect themselves.   With my wife's oral chemo, we did oral chemo with UFT up to 24 hrs before abdominal surgery where some Japanese papers mention actual 5FU based chemo (mostly UFT) hours before colon resections.  Of course, we used those other CAM adjuncts and antimetastatic agents for cancer surgery. We also figure in supernutritional wound support too for better wound healing and to prevent sepsis, especially IV vitamin C after surgery with outside support.

    One step at a time, whatever it takes.  We have to carry the ball on organizing advanced multimodal treatments.  Hope you can find those surgeons that will support your efforts above and beyond.  We all have repeatedly seen the importance of getting past "no" on advanced surgeries where higher surgical skill, great confidence (both), and your special knowledge are factors.  Carefully framing the situation, like WM mentions, and practice with multiple dr interviews can turn "no" into "yes".  

  • myd
    myd Member Posts: 40
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    Jeff, you have given me good

    Jeff, you have given me good advice before.  I agree surgery gives you the best possible outcome.  My wife's oncologist told us that, if   she is started on a chemo protocol, she would need to wait for it to be over before starting something new.  In her case, we are seeking a second opinion and possibly a third before restarting chemo.  

    I'm very sorry for the recurrence.  Our prayers are with you.

    myd

  • Phil64
    Phil64 Member Posts: 838 Member
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    Prayers

    Jeff, I don't have any advise / insight but I wanted to say you are in my thoughts and prayers and I'm following your updates. Wishing you the very best! 

    Sincerely,

    Phil

  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Spots

    Zapping tumors with RFA seems to follow the same rules as buying real estate. It's all about location, location, location! I believe that closer to the outer wall is better than deep inside the lungs but I'm not positive. That could be why your doc feels an ablation is not an option at this time.

    As far as radiation goes, be careful. I had that done last April and while it was a very short treatment (3 times over 1 week) it caused a fibrosis in my right lung and it greatly affected my breathing. I won't do that treatment again! I'm not sure whether it was the proton one or not.

    Hang in there!
    -p

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

    Spots

    Zapping tumors with RFA seems to follow the same rules as buying real estate. It's all about location, location, location! I believe that closer to the outer wall is better than deep inside the lungs but I'm not positive. That could be why your doc feels an ablation is not an option at this time.

    As far as radiation goes, be careful. I had that done last April and while it was a very short treatment (3 times over 1 week) it caused a fibrosis in my right lung and it greatly affected my breathing. I won't do that treatment again! I'm not sure whether it was the proton one or not.

    Hang in there!
    -p

    My surgeon says the spots on

    My surgeon says the spots on the liver could be ablated but doesn't want to do it because of the two chest wall nodules. The cheswall nodules would be very close to the surface, just under the ribs, maybe VATS is an option. It seems as though he is giving up since it is now "extrahepatic disease" which he contradicted himself by saying surgery might be an option if I respond well to chemo. He was the only doctor I still trusted over the past 8+ years. Not any more. I am seeing my first oncologist today to get a treatment plan together but I will shop other hospitals in the meantime. I am not taking no for an answer. Its just another case of a surgeon not wanting to think outside of the box when there are plenty who will think outside of the box. The trick is finding one of those surgeons. I have several copies of the images and am ready to go shopping.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    lp1964 said:

    Dear Jeff,

    I think chemo is gonna benefit you a couple of ways. It will control the growths and buy you time to explore your surgery options.

    What do they mean when they say chest wall? Surface of the lungs, pleura, ribs? And what kind of chemo do they recommend?

    Im rooting for you man, a big time!

    Laz

    I just got the official

    I just got the official report on the MRI what my surgeon calls chest wall the report calls extrapluera. I am seeing my oncologist today. I will let you know what the treatment plan is. I am interested to find out. I have had FOLFOX plus Avastin, FOLFIRI plus Avasin, FOLFIRI plsu Vectibix but I did each cocktail after surgery and then went into a long remission so there is no way of telling how well I responded for sure.

  • thxmiker
    thxmiker Member Posts: 1,278 Member
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    My surgeon says the spots on

    My surgeon says the spots on the liver could be ablated but doesn't want to do it because of the two chest wall nodules. The cheswall nodules would be very close to the surface, just under the ribs, maybe VATS is an option. It seems as though he is giving up since it is now "extrahepatic disease" which he contradicted himself by saying surgery might be an option if I respond well to chemo. He was the only doctor I still trusted over the past 8+ years. Not any more. I am seeing my first oncologist today to get a treatment plan together but I will shop other hospitals in the meantime. I am not taking no for an answer. Its just another case of a surgeon not wanting to think outside of the box when there are plenty who will think outside of the box. The trick is finding one of those surgeons. I have several copies of the images and am ready to go shopping.

    Find a real pro of a surgeon!

    Find a real pro of a surgeon!  This will make a lot of difference.   The first surgeon would not even atempt to do surgery on my mets.  The second removed 20 out of 28 mets!   The confidence of a great surgeon will make a lot of difference.

     

    Best Always,  mike

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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    Hey Jeff,
    I forget where

     

    Hey Jeff,

    I forget where you live, but Mass. General Hospital does Proton Beam Therapy.

    Take care,

    Cyn