Stage IV CRC with Mets to Liver and Lungs

Liza20
Liza20 Member Posts: 5 Member
in Colorectal Cancer #1

Hi All,

First, I’d like to thank you all for sharing your stories. I have been reading and learning from your experiences over the past 4 months. I’ve hesitated in sharing because it’s really not my story to share, but after getting permission from my husband to do so, here is our current reality. And I say “our” because we’ve been together for 41 years, since I was 19yo, so my world, as well as his, has been rocked to say the least.

Back in September, my husband went for his 6 month check up with his pcp. He had previously had some bloodwork done, so it was there when he saw his doctor. The bloodwork showed anemia, and my husband told his doctor he thought he was having a diverticulitis flare. She sent him for a ct scan, which showed a mass on his liver. A pet scan followed, which was followed by a biopsy, at which point he was diagnosed with CRC. We live in Florida, so a trip to Moffitt was scheduled, as well as a meeting with a local oncologist the following day, as we live two hours from Tampa. My husbands CEA was @ 489. At that point we knew we were in big trouble. After meeting with our local oncologist, my husband was scheduled for a colonoscopy the following day, and scheduled for his port on Friday, two days later. He started his FolFox treatment the following Monday. When I say whirlwind, I can’t even believe we did all that in the span of 3 weeks. My husband has now completed 8 full cycles. After 6 cycles his CEA was down @ 99. He is tolerating his treatments well, a little bit of neuropathy, and a day or so of lethargy after the pump comes off.

With all that said, I don’t know what to do. I know he is on a palliative track, but this is not what we want. We discussed w/ his Oncologist up at Moffitt that we wanted a more aggressive track, and he kind of said maybe radiation for the lungs and a hepatectomy to remove mass from the liver. He seemed to be thinking out loud. My question is, to anyone who may have had a similar experience, do we seek out a pulmonologist, a surgeon, and a radiologist now, or do we just wait to talk with primary Moffitt oncologist after his 12th cycle? I’m afraid to wait but I’m also afraid to make the wrong move.

On a side note, my husband is 68yo, still strong, and ever the optimist. Neither his appetite nor his energy have been effected. You would never know he is sick. Any advise would be welcomed.

Liza

Comments

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #2


    Have consults with the best specialist in CRC that you can find in regard to organs affected by mets. Never rely on just an oncologist.

    Quote "Never take surgical advice from an oncologist and never take chemo advice from a surgeon"

    Maybe get with an intergrative oncologist and pull in an ND for more expanded support (more options).

    The immune system is amazing when optimized and it takes a hard hit with heavy chemo over time.

  • Liza20
    Liza20 Member Posts: 5 Member
    #3
    https://csn.cancer.org/discussion/comment/1693018#Comment_1693018

    Thank you SnapDragon2 so much for your quick response. I will start the search for specialists and surgeons. It seems though that Primary Care Physicians don’t want to step on the Oncologists’ toes. The gastroenterologist who did the colonoscopy mentioned surgery after my husband’s scope, but when I told her the oncologist did not mention surgery, she backed off.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #4

    2-3 consults per specialist and compare before deciding.

    I consulted 3 surgeons before I settled on the one I have. Had to figure it out on my own that I needed a surgeon. First onc never mentioned a surgery consult should be in order.

    First onc was a scary dude really. Ran as fast as I could from him when I realized he was just trying to keep me in his grasp for the $$$$ in chemo he wanted to pump into me until it would no longer work. I found another one after searching/interviewing many all over the USA and am very happy with him.

  • Liza20
    Liza20 Member Posts: 5 Member
    #5
    https://csn.cancer.org/discussion/comment/1693041#Comment_1693041

    Honestly, that just blows my mind that we have to figure out who to consult. It’s all so overwhelming to begin with. I am going to consult with Mayo in Jacksonville as well. We will be meeting with a pulmonologist here in our area soon and maybe he can start us on this journey of sorting out where to begin to look for a surgeon and radiologist. I so appreciate you sharing your experience.

    Liza

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #6

    You are welcome.

  • Soundings
    Soundings Member Posts: 14 Member
    #7

    Most big cancer centers have tumor boards, where oncologists, surgeons, radiologists, basically a brain trust talk about cases. If it seems too overwhelming to find different experts for each issue, all at once, maybe you can do a 2nd opinion at a place that uses this multidisciplinary approach, where everybody can weigh in.

  • Liza20
    Liza20 Member Posts: 5 Member
    #8
    https://csn.cancer.org/discussion/comment/1693204#Comment_1693204

    Thank you. We have a primary oncologist through Moffitt, a local oncologist following under the direction of the Moffitt Oncologist, and now a consultant oncologist through Mayo. I was expecting a multidisciplinary team approach, but we haven’t gotten that far, I guess. Or the tumors are too big, and they want to shrink them first. My son is a medical rep who works with pulmonologists. He is going to enlist the help of one of these drs to work with us to sort this out. It’s so confusing because I just read on another thread someone with almost the same size colon tumor going in for surgery. I question our decision to follow the recommendation of our dr to see an oncologist first, instead of a surgeon. The rationale, if I remember correctly, was there was no blockage, so no need for immediate surgery. Again, I so appreciate your help.

  • Soundings
    Soundings Member Posts: 14 Member
    #9
    https://csn.cancer.org/discussion/comment/1693205#Comment_1693205

    My wife had a very large liver tumor (16x10cm) to start (July 2021). She is being treated at Hopkins. The onc brought the case to the tumor board, and the liver and colon surgeons was interested but wanted to see shrinkage. She did 8 rounds of FOLFOXIRI (6 with Avastin) and had over 50% shrinkage, and Signetera levels went from over 10,000 down to just over 5.

    We didn’t choose the liver surgeon and didn’t meet Dr. Burns until December, but he had been following the case the whole time and the surgery was Jan 3rd.

    I think people go about this different ways. We trusted her onc who had a good rapport with both surgeons (hopefully colon surgery in June, with more chemo starting in a couple wks).

    I wish you the best of luck, and I hope you find a good team that wants to work with you on a plan.

  • Liza20
    Liza20 Member Posts: 5 Member
    #10

    Soundings,

    Thank you for sharing your wife’s journey. My husband also has a large liver tumor, 5.1cm, and several small nodules in the lungs. His first 6 treatments of folfox + avastin resulted in marginal decrease in size of tumors, with no new growth. He just completed his 9th course. My son will be scheduling an appt w/ a pulmonologist buddy who may help us navigate a bit better.

    I wish your wife the best on her healing journey. And thank you again for sharing, and helping to instill a bit of hope on this path we’re on.

    Liza

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