ISO Surgical Oncologist recommendations

hillaryallen01
hillaryallen01 Member Posts: 10 Member
edited December 2022 in Colorectal Cancer #1

I'm looking for recommendations for a surgeon (or team of surgeons) for a friend of mine who has stage 4c CRC. He was expecting liver resection along with peritoneum surgery next month but they found new lymph node mets and just informed him they won't proceed with the surgery now. Can anyone recommend anywhere we should reach out to for a second opinion? Seems like he needs the liver resection and HIPEC but I'm a little new to this so maybe HIPEC is not necessary (was not part of the original plan and I assume theres a good reason for that). Send me names, please and thank you.

Comments

  • sgold88
    sgold88 Member Posts: 85 Member
    #2

    Where are you located?


    you may want to get several/many second opinions. Ask enough surgeons their opinion and perhaps one will take a shot at it.

  • hillaryallen01
    hillaryallen01 Member Posts: 10 Member
    #3
    https://csn.cancer.org/discussion/comment/1702389#Comment_1702389

    Thank you for the response! We're on the west coast (U.S.) Traveling is an option though. Someone else suggested asking about SBRT or other possible treatments in the mean time which was also encouraging. There's so much information out there to sift through, so I really appreciate the collective wisdom in this discussion board!

  • sgold88
    sgold88 Member Posts: 85 Member
    edited December 2022 #4

    I don’t know much about SBRT. You’re best bet could be going to a broad, full service comprehensive camcer Center like MSK in NY or MD Andersen in Houston which are large but if you want equally good but without the massive city based machine, I suggest Roswell park in Buffalo. We had a great experience there. . They can do a full analysis and recommend a treatment. I would focus first to on a second opinion before chasing SBRT or any other kind of treatment.

    good luck. Take a day and call around and get several second opinions going. You’ll get enough info to “put it all in the mixture” and you’ll be equipped with hopefully an aggressive next step to take.

  • hillaryallen01
    hillaryallen01 Member Posts: 10 Member
    #5

    Thank you so much for the help. I hate this disease but am trying my best to stay hopeful and positive for us all!

  • sgold88
    sgold88 Member Posts: 85 Member
    #6

    My wife is 3 yrs NED after being Stage 4. Colon primarily with Mets then to her liver and a possible peritoneum recurrence a year ago.

    there are many survivors out there. More than you think. Good luck.

  • hillaryallen01
    hillaryallen01 Member Posts: 10 Member
    #7

    I'm so glad to hear about your wife! It is very helpful for me to hear other stage 4 stories. I just did 3 surgeries (liver resection + PVE, second liver resection, colon resection) and oncologist said NED as of last surgery 11/18. I want to celebrate but am kind of stuck in anxiety and fear right now. Have to do 3 months of "mop up" chemo next and then trying to be hopeful about what's next.

    My friend is in the system at MD Andersen so hopefully between them and the team here they will eventually get back to surgery. The plan for now is to deal with the lymph nodes first and then go from there.

  • hillaryallen01
    hillaryallen01 Member Posts: 10 Member
    #8
    https://csn.cancer.org/discussion/comment/1702411#Comment_1702411

    I'm curious about the "possible recurrence" part. Does that mean they are just monitoring it for now. No biopsy? Is that common?

  • hillaryallen01
    hillaryallen01 Member Posts: 10 Member
    #9
    https://csn.cancer.org/discussion/comment/1702429#Comment_1702429

    I just found your other post about that so I think I found the answer to my question. Still figuring out how this discussion board works. Thanks again!

  • sgold88
    sgold88 Member Posts: 85 Member
    #10

    I haven't shared much detail about that. Basically a year ago in Fall 2021, my wife did a regular follow up CT and they found a nodule near her mesentary (basically in her peritoneum). They then did a PET scan to be sure and determined it was malignant. We went to surgery (cytoreductive/HIPEC in March 2022), had the spot removed, and when the pathology came back, it was remarkably showing not malignant. It is not uncommon for scar tissue to "trick" the PET scan to look like cancer (false positives in this case run 11-13% of the time). Given my wife's profile of stage 4 colon cancer dating back to mid-2019, going to surgery was the right call, but the pathology showed different. The reason I say "possible recurrence" is because it's theoretically possible the spot was cancer at the time of the scan in Fall 2021 but died out (from brief chemo) that she had leading into the surgery in March 2022. It's more likely we believe than not that the chemo wouldn't have killed the cancer that fast and over such a short chemo period and therefore we are feeling it was a false positive. We'll never know for sure. In any event, she's had several scans since and is "NED" and her oncologist has taken her chemo port out.

  • hillaryallen01
    hillaryallen01 Member Posts: 10 Member
    #11
    https://csn.cancer.org/discussion/comment/1702431#Comment_1702431

    Either way it must have been a relief to find out it was not cancer! I didn't know that about the false positive rate for scar tissue on PET. My next goal along this journey is to stay NED long enough to have this port removed. Like with the chemo, it's a love/hate relationship.

  • sgold88
    sgold88 Member Posts: 85 Member
    #12

    Yes definitely a relief, but the anxiety never truly goes away.

    I'm curious why, if you were NED since 2018 - why are you doing mop-up chemo now, in 2022/2023? Maybe I misread what you wrote but it seems like you're in a great spot now.

  • hillaryallen01
    hillaryallen01 Member Posts: 10 Member
    #13
    https://csn.cancer.org/discussion/comment/1702444#Comment_1702444

    Oh, not 11 of 2018, 11/18 of 2022. Sorry, that was not at all clear.

  • sgold88
    sgold88 Member Posts: 85 Member
    #14

    Got it.

    yeah for sure you should celebrate. The anxiety never goes away so may as well celebrate. Certainly you could have received bad news after your last scan, so this is a great outcome. Mop up chemo is standard as you prob know and remarkably there is a reasonable long-term survival rate associated with colon primary/liver mets if the surgery gets it all like in your case. I know 12-15 yr (and counting) survivors living live just fine

  • rperez19
    rperez19 Member Posts: 1 *
    #15
    https://csn.cancer.org/discussion/326022/iso-surgical-oncologist-recommendations

    Hi Hillary,

    I am sorry to hear about your friend but glad they have a friend like to looking out for them and supporting them through this challenging time. If you are in Ca I would recommend going to City of Hope in Duarte CA . They have world renowned doctors and are truly the best. My husband is seeing Dr. Kaiser for CRC and Dr. Singh for the liver.

  • hillaryallen01
    hillaryallen01 Member Posts: 10 Member
    #16
    https://csn.cancer.org/discussion/comment/1702513#Comment_1702513

    Thank you for the recommendation! I've read a few articles that mention City of Hope. I'll be sure to pass of the information. He's been in touch with MD Anderson too, and is in their system. Right now they are trying to deal with the lymph metastases. He's had a really good response to chemo so far (primary tumor is gone) so really hoping that keeps up! Thanks again.

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