Help - please, please

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janie1
janie1 Member Posts: 753 Member
in Colorectal Cancer #1
I just came from a follow up check with colon surgeon. Now I'm confused. I swear the onc said with 15 tumors in the liver, do chemo first, hopefully most will go away. Then, if 4 or less tumors remain, then liver resection is possible. **Colon surgeon said can NEVER have liver surgery, IF the liver EVER had more than 4-5 tumors (there would be no point to it). QUESTION--- Has anyone here had more than say 5 tumors in liver prior to chemo, then had resection of liver to remove remaining few tumors??? (I said to colon surgeon...but there are people who have 60-80% of their liver removed.....he said, but they only had a few tumors to begin with....i'm confused, and really mad if lied to by ONC. What is the truth? I can handle it. Thanks to all.

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  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #2
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    Janie you know my story ,more than 10 or 12!
    most of them disappear with chemo but the big one still there, don't remember but probably some minor too! I think depends of location if remaining tumors are together they can remove the whole piece of affected liver ,they only need a 20 % of healthy liver to operate!.
    Hugs!
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #3
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    Janie,
    Different surgeons have different opinions.

    There are a number of people on this forum who were told they were inoperable, and later had an operation.

    I have a good friend who was dx'd with brain cancer the same time I was dx'd with rectal. His doctors said surgery was not an option, three months later he had surgery.

    Discuss it with your Onc. He may recommend another surgeon.

    Blake
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
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    I did
    Hi,

    Upon diagnosis of my cancer, I had "innumerable" subcentimeter lung tumors and 12 visible tumors in my liver, in addition to the rectal tumor. I had Folfox chemo first with a good response- none of my tumors lit up on the PET after chemo and the CT showed only 3 visible liver tumors. I was then told by my liver surgeon (Dr. Andrew Lowy at UCSD/Moores in San Diego) that I was a good surgical candidate. I did end up having the liver resection, which was in 5/08. I was told "we need to get those remaining tumors out of there". Never was I told I couldn't have the surgery because I had numerous tumors before chemo.

    Now, I must tell you that I have had recurrence in my liver, which actually didn't surprise me because I knew that areas of my liver that were remaining after the resection formerly had tumors and even if nothing showed up there on a scan, I could still have microscopic cancer cells still present. Maybe this is the rationale behind them now saying you can't have the resection if you had more than 4 tumors- maybe because it would be a higher risk of recurrence.

    Well even though I've had a recurrence in the liver (plus recurrence also in rectum and lungs- lung tumors actually never went away but did stop lighting up on the PET at that time), I still think it was good that I had the liver resection- I might be far worse off now if I hadn't gotten those remaining three (which turned out to be six- there were three additional tumors present that had never shown up on any scan- my surgeon said that does happen sometimes & we would never have known they were there if I hadn't been "opened up" surgically.) I never did have any follow up (adjuvant) chemo after my liver resection. My then-onc didn't even mention it & I didn't know any better. I do wonder if I might not have had the recurrence if I had done the chemo after the liver resection.
    I am now still on chemo and have recently started some natural treatments as well.

    So- my advice to you is to get another opinion from another surgeon not related to the same medical group or hospital as the one who told you "no surgery". I am willing to bet that you'll find someone who WILL do the surgery!

    Best wishes,
    Lisa
  • pluckey
    pluckey Member Posts: 484 Member
    #5
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    Last Year, march 2009 I had
    Last Year, march 2009 I had my liver resection after a year of weekly chemo

    I had 9 tumors on my liver- when first diagnosed. I had 2 huge ones, one on each lobe, that, once chemo started working and they started shrinking, exposed the other tumors.

    I was told I was inoperable, not a good idea, too much liver to take since tumors were all over...

    I sought an option outside of my area - Chicago, and was operated on at New York's Memorial Sloan Kettering - Dr. Yuman Fong. Ended up taking 50% of liver 8 tumors, 1 is on the artery, so they ablated it and it is pretty dried up (necrosis)

    It's my beleif that each surgeon has it's own skill set, expertise and abilty to take on the risk of a surgery. It may be one hopital's protocol to only do cases that meet certain criteria to mitigate risk.

    My surgeon is a known expert in this field, known also for miniscule blood loss during the surgery, which can be a problem.

    So, breathe, do your homework like you are doing. We ALL have different stories of navigating throught this horrible labryinth tyring to piece togther information and medical language and hope and all that comes with this damn Cancer.

    No one will open you up right now, so first, get settled with a good chemo program to start shrinking those tumors, then line up your next plan of attack. You have to be strong to under go the liver surgery, you want to be at your best, despite what the chemo does.

    good luck and keep us posted. there are a lot of us!

    Peggy
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #6
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    I would get several opinions.
    I would get several opinions. Also different surgeons have totally different practices of what is safe to remove and at what time.

    I spoke to 6 oncology/surgery teams before I had my first surgery. I spoke to two additional teams before I had surgery for my second round of cancer. The second time everyone I spoke to knew each other, and spoke well of each other. It was reassuring. I also liked a team, vs Onc and surgeon. I wanted to have a surgery where the Onc reviews the tumors and surgical margins before I was sewed up.

    Best Always, mike
  • janie1
    janie1 Member Posts: 753 Member
    #7
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    Help - please, please
    Thanks so much to ALL for your valued input. I knew of Pepe and Lisa's treatment...and wondered about others, too. Great info, Peggy. (Just stockpiling as much info as possible....too bad this is an unpaid job). janie
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #8
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    "No" may mean maybe
    We've been told "no" and "maybe" by surgeons when I thought it was &*%#@ obvious, as did the radiologist who had shown the sharpest set of eyes. We were interviewing the wrong surgeons.

    In our case, there were additional technical considerations that needed to be interpreted and factored in, and a doctor willing to recognize them. Biologically improving one's position is important. Marshalling overlooked facts and interpretations that tilt your way may be important. Finding someone experienced and confident enough, able and willing to a job beyond "(sub)standard medicine" is important. Again, experience, not ambitition.

    Presenting one's own case may require practice.
  • luvmum
    luvmum Member Posts: 457 Member
    #9
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    Dear Janie
    My mum had 7 and 2 big ones in her liver and her oncologist, colon surgeon and liver surgeon all said 'not operable' when she was first dx on 27th Oct 2010. After 4 rounds of chemo, she had liver resection on 28th March 2011!

    There is always hope!
    I will pray for you and best wishes to your chemo treatments.
    Dora
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #10
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    Hi Janie, even though I
    Hi Janie, even though I don't have the same things to think about as you, I wanted you to know I read your post and will be thinking of you! Take care

    Love and hugs, Gail

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