Anyone Have "Maybe Mets"?

Capox Dude
Capox Dude Member Posts: 83 Member

Before my surgery in April, the onc and surgeon looked at  my CT scan with enhanced spots on my liver and lungs and decided I may be stage IV.   They did a Pet Scan and the liver did not "glow", FDG wise.   My lung issues were thought to be asthma scar tissue, and so off to colon surgery and chemo we went.  My CapeOx  regime was not perfect, but I did not have to reduce the Xeloda or the Ox during the 3 months.   They did a post Chemo CT and the same old stuff was on the liver.  The radiologist says "post chemo mets or hemangiomas".    

Now, I know how much cancer loves it some liver, and that about 60% of colon cancer patients wind up w/ liver issues.  So here is my question: a surgeon wants to resect the lobe with the maybe mets, but the oncologist notes the total absence of FDG pick up on Pet scan, and my steadily declining normal CEA numbers - has anyone had to decide to do resection when the onc was not sure if the scans showed actual cancer?   Has anyone had to pick between resect now to increase chance of survival, when there is no certainty of mets?   Surgeon said "We just don't know..."   

 

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Comments

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    No, that hasn't happened....

    but, when my met? hemangeoma? tunred out to be a met, my liver surgeon did NOT want to resect unless he had to. He said 'We don't resect a healthy liver' and in his opinion, my small 2.2 cm met was a small part of a big healthy liver. We had a fight with the insurance, becasue they said resect and the surgeon wanted to ablate. The surgeon won. 

    The moral to this story is, do you want a healthy liver reseced without knowing for sure its Cancer?  I would say no. My surgeon would say no. 

    It will be a hard decision for you, and I wish you the best. Maybe a second opinion. 

    Tru

     

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,259 Member
    Spots

    I have had spots on my liver since my first diagnosis.  My oncologist's opinion seems to be if they are not growing, they are not a problem.  My undertanding is that this is a common thing for many people.  After a few years on earth you end up with various bumps and bruises, not all of which are cancer.

  • Capox Dude
    Capox Dude Member Posts: 83 Member
    Thanks for the input

    I've already arranged to go to MD Anderson for a 2nd opinon.   I'm thinking with my 1.5 cm non-glowing spots, ablation seems like a better deal - assuming they will ablate a spot that it likely too small to needle biopsy and not sure what it is.

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member

    Thanks for the input

    I've already arranged to go to MD Anderson for a 2nd opinon.   I'm thinking with my 1.5 cm non-glowing spots, ablation seems like a better deal - assuming they will ablate a spot that it likely too small to needle biopsy and not sure what it is.

    I hope they resolve the issue

    I hope they resolve the issue for you, with some certainty. My first recurrance came after 2 years of hemming and hawing at "stuff" in my liver. First they wouldn't light up, but by 2 years end the onc said whatever the things were, they were growing, and were going to get removed. By the time I spoke with the onc/surgeon, he ask me what I wanted to do with the three spots in my liver. I yelled, "get them the hell out", as I was rather rattled by then. He says"Yeah, they seem to come back the chemo and radiation routes". I'd have liked to smack him, but I needed the surgery, now. Anyway, it went fine, showed up as one more spot three years later, and nothing since that surgery. As Tru said, she had ablation on the recurrance and she's been good since, longer than I, so it's a good choice as well, without the big scars. Best of luck with your appointment..................................................Dave
     

  • Capox Dude
    Capox Dude Member Posts: 83 Member
    edited September 2019 #6

    I hope they resolve the issue

    I hope they resolve the issue for you, with some certainty. My first recurrance came after 2 years of hemming and hawing at "stuff" in my liver. First they wouldn't light up, but by 2 years end the onc said whatever the things were, they were growing, and were going to get removed. By the time I spoke with the onc/surgeon, he ask me what I wanted to do with the three spots in my liver. I yelled, "get them the hell out", as I was rather rattled by then. He says"Yeah, they seem to come back the chemo and radiation routes". I'd have liked to smack him, but I needed the surgery, now. Anyway, it went fine, showed up as one more spot three years later, and nothing since that surgery. As Tru said, she had ablation on the recurrance and she's been good since, longer than I, so it's a good choice as well, without the big scars. Best of luck with your appointment..................................................Dave
     

    Thanks all

    Dave when you said "First they wouldn't light up, but by 2 years end the onc said whatever the things were, they were growing" do you mean that they did not glowon Petscan - but were later found to glow....or did not glow but later were taken out and confirmed via pathology to be mets??

  • Butt
    Butt Member Posts: 352

    They can do ablation on a liver if there is stuff also liver resection. I found those things much easier that chemo. What stare do you live?

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member

    Thanks all

    Dave when you said "First they wouldn't light up, but by 2 years end the onc said whatever the things were, they were growing" do you mean that they did not glowon Petscan - but were later found to glow....or did not glow but later were taken out and confirmed via pathology to be mets??

    They didn't light up, they

    They didn't light up, they didn't test positive with a needle biopsy. They called them cysts for a while, and later lesions, they just didn't have certainty for quite a while. Finally a needle biopsy came back positive, then a PET scan showed the three spots. I was hoping it was just benign stuff, then when he showed the scan with three spots well apart in my liver, I thought their uncertainty had let the mets loose in me. It made for a nervous time............................................................Dave

  • SoCal42
    SoCal42 Member Posts: 78
    I had Maybe Mets in the lungs

    I had Maybe Mets in the lungs. We just followed them for about fifteen months because there was a chance they were just scar tissue. I went ahead with a surgical lung biopsy after three lung nodules continued to slowly enlarge, all at the same rate. This was after two attempts at a biopsy by bronchoscopy, both of which were inconclusive. Because these things were SO slow growing, we weren't that worried about the delay in treatment. In fact, by delaying, we kind of demonstrated that there didn't appear to be any additional mets appearing anywhere during all that time, which caused my oncologist to go after really aggressive treatment of the existing disease.

  • abita
    abita Member Posts: 1,114 Member
    SoCal42 said:

    I had Maybe Mets in the lungs

    I had Maybe Mets in the lungs. We just followed them for about fifteen months because there was a chance they were just scar tissue. I went ahead with a surgical lung biopsy after three lung nodules continued to slowly enlarge, all at the same rate. This was after two attempts at a biopsy by bronchoscopy, both of which were inconclusive. Because these things were SO slow growing, we weren't that worried about the delay in treatment. In fact, by delaying, we kind of demonstrated that there didn't appear to be any additional mets appearing anywhere during all that time, which caused my oncologist to go after really aggressive treatment of the existing disease.

    So were they mets or not?

    So were they mets or not?

  • SoCal42
    SoCal42 Member Posts: 78
    abita said:

    So were they mets or not?

    So were they mets or not?

    Ha ha, I guess I left that

    Ha ha, I guess I left that part out! Yes, they were mets. By that point, I would have been surprised if they were not mets. One was removed with the biopsy surgery, and the other two were treated with stereotactic radiation therapy, and I'm now finishing my last 6 chemo treatments out of a total of 24 treatments. Chemo is irinotecan + 5FU + leucovorin + cetuximab. One CT was done during the summer, which did not show anything new appearing. I'll do another CT some time after finishing chemotherapy. I have a bunch of very small lung nodules on CT scans, which makes me paranoid that they are something dormant, but no way to really know.

  • Capox Dude
    Capox Dude Member Posts: 83 Member
    MD Anderson Is Awesome

    Got back and the PET and CT said, respectively, "No evidence of current adenocarcinoma or metastasis" and "suspicious for metastasis until otherwise explained".   LOL    Nobody knows.  My CEA is in the normal non-smoker range, so they really have no defintiive idea.  So I am getting the three maybe mets out via laporascopic surgery.   They are not large, and in easy to get-to locations.    If they are not mets, then at least my colon cancer removal scar will be balanced out with one further north.   Cool 

    If they ARE mets, I want them out and gone.    I know that radiation and ablation is an option, but the way I see it, some tumors that are ablated can come back if  not 100% Bad Witch of the West dead.  ("Really, most sincerely dead...")  It will be much harder for them to regenearte in my liver from a trash can or the MD Anderson pathology lab fridge.   

    I will keep y'all informed. 

     

     

  • SoCal42
    SoCal42 Member Posts: 78

    MD Anderson Is Awesome

    Got back and the PET and CT said, respectively, "No evidence of current adenocarcinoma or metastasis" and "suspicious for metastasis until otherwise explained".   LOL    Nobody knows.  My CEA is in the normal non-smoker range, so they really have no defintiive idea.  So I am getting the three maybe mets out via laporascopic surgery.   They are not large, and in easy to get-to locations.    If they are not mets, then at least my colon cancer removal scar will be balanced out with one further north.   Cool 

    If they ARE mets, I want them out and gone.    I know that radiation and ablation is an option, but the way I see it, some tumors that are ablated can come back if  not 100% Bad Witch of the West dead.  ("Really, most sincerely dead...")  It will be much harder for them to regenearte in my liver from a trash can or the MD Anderson pathology lab fridge.   

    I will keep y'all informed. 

     

     

    Yeah, they really don't know

    Yeah, they really don't know until they take at least one of them out and look at it. One of my mets was positive on PET, the other two were not (they were smaller though). I had one met removed completely with the biopsy surgery (the one that was the easiest to reach), but the surgeon didn't want to remove the other two surgically because it would have caused a significant loss of total lung tissue (because of their locations). He felt going after the remaining mets with radiation and chemo was a safer idea in that case. I'm 55, and as he said, "You might still be needing your lungs for a long time...Smile

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member

    MD Anderson Is Awesome

    Got back and the PET and CT said, respectively, "No evidence of current adenocarcinoma or metastasis" and "suspicious for metastasis until otherwise explained".   LOL    Nobody knows.  My CEA is in the normal non-smoker range, so they really have no defintiive idea.  So I am getting the three maybe mets out via laporascopic surgery.   They are not large, and in easy to get-to locations.    If they are not mets, then at least my colon cancer removal scar will be balanced out with one further north.   Cool 

    If they ARE mets, I want them out and gone.    I know that radiation and ablation is an option, but the way I see it, some tumors that are ablated can come back if  not 100% Bad Witch of the West dead.  ("Really, most sincerely dead...")  It will be much harder for them to regenearte in my liver from a trash can or the MD Anderson pathology lab fridge.   

    I will keep y'all informed. 

     

     

    Sounds like the route I'd go

    Sounds like the route I'd go if given the option, I've put up with big opening surgeries so lapriscopy sounds easier to recover and heal from. Best of luck......................................Dave

  • zx10guy
    zx10guy Member Posts: 273
    I have had 2 3cm spots on my

    I have had 2 3cm spots on my liver since diagnosis back in Dec of 2012.  The spots did not light up on a PET and were negative from the biopsy done before my CRC surgeon resected my colon.  Since then, the spots have never lit up with 2 other PET scans and have not changed in size during or after chemo with the various CT scans I've had.  The spots were called hemangiomas from the beginning and the confidence is very high they still are.

    Maybe the wait and see approach is prudent in your situation.  One thing you don't want to do is go into any surgery without really understanding the possible consequences.  Keep in mind every time surgery is done in your abdomen, you increase the risk of adhesions which will decrease the number of times you're able to have surgery.

  • Capox Dude
    Capox Dude Member Posts: 83 Member
    zx10guy said:

    I have had 2 3cm spots on my

    I have had 2 3cm spots on my liver since diagnosis back in Dec of 2012.  The spots did not light up on a PET and were negative from the biopsy done before my CRC surgeon resected my colon.  Since then, the spots have never lit up with 2 other PET scans and have not changed in size during or after chemo with the various CT scans I've had.  The spots were called hemangiomas from the beginning and the confidence is very high they still are.

    Maybe the wait and see approach is prudent in your situation.  One thing you don't want to do is go into any surgery without really understanding the possible consequences.  Keep in mind every time surgery is done in your abdomen, you increase the risk of adhesions which will decrease the number of times you're able to have surgery.

    Update

    I had CT guided needle biopsies done to see if they could figure it out - hemangiomas or mets.     I'll find out results this Friday.   The realist in me leans toward mets.  

  • Capox Dude
    Capox Dude Member Posts: 83 Member
    Update indeed

    Mychart app showed "new test results".  So, they do not show any tumor in the three maybe mets biopsied.  And I know that a negative biopsy is not really negative, just the absence of positive, but it is making me re-think the resection.   I was honestly up late worrying and getting more info about my recovery from lap liver resection, if my job would be lost and the like if it took too long.  Let alone the reality of stage 4 status.  So any news is welcome news.   It is hardly an NED, but better than three mets positive.   Going to bed finally. 

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    edited October 2019 #18
    Have you looked into Ablation

    I know there are restrictions for Ablation, but it would be much easier than resecting the liver if you were a candidate. 

    I had an ablation on a liver met in April of '14 and have been NED ever since. 

    It is a terribly hard decision. You don't want to end up playing the 'what if?' game, so I hope you are comfortable with whatever decision you make. 

    Wishing you the best. 

    Tru

  • suzycruise76
    suzycruise76 Member Posts: 159 Member

    Update indeed

    Mychart app showed "new test results".  So, they do not show any tumor in the three maybe mets biopsied.  And I know that a negative biopsy is not really negative, just the absence of positive, but it is making me re-think the resection.   I was honestly up late worrying and getting more info about my recovery from lap liver resection, if my job would be lost and the like if it took too long.  Let alone the reality of stage 4 status.  So any news is welcome news.   It is hardly an NED, but better than three mets positive.   Going to bed finally. 

    This must be great relieve for you.  I hope you are still sleeping nowWink.

  • Capox Dude
    Capox Dude Member Posts: 83 Member
    Thanks so much for your support

    Suzy and Tru.   As if happens, MD Anderson called today, and my surgeron cancelled my appointment and my surgery - and said to come back in three months, as there was no sign of cancer in my liver.  I'll take that!!  Not a guarantee, but not surgical recovery over Thanksgiving and Chrismtmas. Cool

  • suzycruise76
    suzycruise76 Member Posts: 159 Member

    Thanks so much for your support

    Suzy and Tru.   As if happens, MD Anderson called today, and my surgeron cancelled my appointment and my surgery - and said to come back in three months, as there was no sign of cancer in my liver.  I'll take that!!  Not a guarantee, but not surgical recovery over Thanksgiving and Chrismtmas. Cool

    Great news!

    That's the best news you can hear right now! Enjoy those 3 months...and long after that!

    Suzy