New member - stage 4, 5 mets to liver

CharlieGtx
CharlieGtx Member Posts: 7 Member
edited August 2022 in Colorectal Cancer #1

Thank you for this board. I'm fairly new to this diagnosis but want to share my story.

Originally I went to a gp for 6 months of stomach issues I couldn't shake. Tons of blood tests and $$ to find nothing but we will schedule you for a colonoscopy, but it will be 2-3 months....never happened. 

2 months later in ER for uncontrolled vomiting 3 days straight. CT scan shows colon tumor, released and told get to our colonoscopy next week.

Confirmed tumor. Then it all feels like everything was so slow. Wait a week for the biopsy to prove what we already know, wait two weeks for an MRI to check everywhere else. Wait a week after MRI results to meet the oncologist.

My Oncologist meeting was very depressing. Stage 4 with 5 tumors on the liver plus the original in the colon and another in small intestines. Too advanced for surgery, no chance for cure. Starting chemo for palliative care. 2-3 years estimated life span.  

Luckily it's a multi-disciplinary hospital with team meetings to review all cases. A couple days later asks to meet again and says the colon surgeon feels I am a good candidate and wants to have a consult. Very different presentation. Surgeon; The colon blockage is causing all the vomiting. Absolutely have to have surgery to get back to normal life and be able to eat again. I asked about liver surgery also. Not his field, but we have a great liver surgeon and we will take this one battle at a time. Ends with "We can absolutely fight this. It will be an uphill battle but I am otherwise healthy and relatively young. I have a good chance." He went over all the risks and was very thorough on what he will do. The surgery went great, I didn't need an ostomy bag, very grateful for that. After surgery, I feel perfectly healthy again. Post surgery consult he told me the tumor in the top of my small intestine was benign, not part of my cancer, but was the complete blockage causing all my sickness. "Colon cancer is sneaky, if it wasn't for that I would never have known about my cancer until the wheels are falling off." Of 18 lymph nodes, only 1 had cancer.

Next I met the liver surgeon. I tried to get him to say if he would do surgery, but he wouldn't commit. He did tell me a lot of stories and information, but trying to keep this from rambling on too much. I said I have 5 tumors and read that any more than 2 are non-candidate. He said that was old school thinking, we can do more, but it is more dependent on location and how I respond to chemo.

Now I am on chemo, 3rd round today. Plan is to do 3 months then rescan and reevaluate with the liver surgeon. I plan to push hard to have surgery. If he says no, I will start looking for second opinions.  

What has been everyone else's results with liver mets, how many did you have and were you able to get surgery to remove all?


Thanks,

4/28 Dx Colon Cancer - age 50

5/16 Confirmed Stage 4

5/26 Colon resection

6/28 Start Chemo FOLFOX plus panitumumab every 2 weeks

Comments

  • feli1114
    feli1114 Member Posts: 1 Member
    #2

    Hi Charlie,

    Your story sounds very familiar. My partner was diagnosed in March of 2021, Colon cancer Stage 4 with metastasis to the liver. He too is very young at 47 years old and very healthy besides the fact. He had part of large intestine removed in March of 2021 and went through 12 rounds of chemo… FOLFOX PLUS PANITUMUMAB every 2 weeks. He did well, biggest side effect was acne rash. One year later he had 25% of his liver removed. He’s doing well, only day he misses work is the day he is in for chemotherapy. Started another round after liver surgery but they switched the PANITUMUMAB with a similar one. He had 7 rounds so far and PET scan shows another mass in the liver. They are putting chemo on hold and are going in directly with “chemo beads”.

    We are staying positive and have faith. Sending prayers your way.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    edited August 2022 #3

    Hi Charlie, I had 3 mets in my liver almost 3 years after the colectomy, and they were spread wide. They scooped the 3 after a wide incision, [The onc/surgeon said he could have done it arthroscopically, if it had been clearer before surgery]. I healed fine got right back to work, but by 2 1/2 years out another met, near a former one, had to be dug out, and they did. I healed up fine, though I had a sizable hernia from that wide cutting, and was back at work again within a month. That was nearly 8 years ago, and I'm still NED, so hang in there............................................Dave

  • JanetRB4
    JanetRB4 Member Posts: 11 Member
    #4

    This is all fascinating -- and a bit confusing but also somewhat encouraging. I had a colectomy in 2019. The tumor had barely entered the lining but one lymph node biopsied had a small tumor. I was in denial and waited awhile before seeing the Oncologist -- had the usual scans , etc., etc. - without going into all details over the 2-3 year period, a scan showed 7 liver lesions and a biopsy diagnosed them as colon cancer.

    I went through 12 infusion treatments and had such good results that I am now on maintenance with Capecitabine and doing very well on it. When I started chemo, my CEA was close to 900. Now it's 7.9.

    After all that boring news, my main question is this: The recent Pet scan I had showed that 6 of the liver lesions were gone and the 7th was "inactive." Yet the knowledge that this type of liver cancer is incurable hangs over my head. ( the note about it being incurable is written on every page of notes I get from the Oncologist). How do we know 100% that we cannot survive no matter what is done? And even if the next scan I have shows no lesions in the liver, what then? I've read about a method whereby a certain procedure can zap a lesion w/o surgery. Wondering if anyone has tried that.

    I understand the lymph node situation but I'm struggling with the negativity of the entire process. Thanks for reading all of this stuff..... Janet B, TX

  • CharlieGtx
    CharlieGtx Member Posts: 7 Member
    #5

    Thank you all for your replies. It is very encouraging to hear from others, especially long term survivors. I hope I can be here spreading hope for others in 8 years. Right now it consumes my mind, and at the same time I try not to spend too much time letting it control my life and try to forget I have it for a few days.

    Janet, yes very similar. So far I had the rash very bad at first, finally starting to clear up. Also got mouth sores, but the most annoying side effect is the cold sensitivity. In this 100 degree Texas heat I just want my iced tea, but drinking anything cold is like swallowing sharp rocks. 12 rounds is a long time, I am hopeful I can get reevaluated for liver resection after 6 rounds. 

    Dave, thank you, that is very encouraging. When I first met the liver surgeon he said he would do open surgery because he doesn't trust scans, it's always different inside. I trust him and hope he will do the surgery for me. I'm not sure how widespread mine are or how much it will take, but I am prepared for a long recovery if it gives me the chance to be tumor free, even temporarily. Also glad to hear they were willing to go back in a second time. My oncologist made it seem like if it comes back after surgery, then its just chemo only. 

    Janet, it can all be overwhelming, but it sounds like you had an amazing response to the chemo. I hope you continue to do so. Everything 'right now' says there is no cure, it can always reoccur, but I find it encouraging to read the stories of people 10-15 years past their diagnosis and still ned. Maybe in 5 years they will have a full cure so we don't always have to worry about it.  


    Charlie 

  • JanetRB4
    JanetRB4 Member Posts: 11 Member
    #6

    Best wishes from here --- it's such a vague and dubious time and we each seem to have some different reactions to the meds. I so relate to the cold -- have to wear my oven mitts when opening up Boost or taking milk out of the fridge! My biggest gripe to date is the numb fingers and heavy feet. I love crafts and some days I just barely feel anything I hold in my hands which makes delicate work difficult and writing almost impossible (and I drop things). But I'm encouraged by my otherwise general good health -- we're planning a week in Rockport in September and I'm going to enjoy it come hell or high water!!!

    I'm plan to try to drop into the discussion group more often to see how everyone is coping. Hang in there because you're definitely not alone!! Janet B

  • Diane_K
    Diane_K Member Posts: 84 Member
    #7

    I'm sorry you're going through this terrible experience.

    I am now 5 years and 6 months cancer-free or NED (no evidence of disease). I had stage 4 colon cancer. My cancer metastasized to two lymph nodes, two tumors in my liver, and three in my lungs. I went through six months of chemo, and colon and liver surgery. Three months after stopping chemo nodules in my lungs began to grow. That's when I found out it had spread to my lungs. I went through 6 more months of chemo and two more surgeries to remove them.

    Everyone's situation is different. My tumors were small and in areas that could be surgically removed.

    It sounds like you have a good cancer team. If at some point you would like a second opinion, I would highly recommend that. If the doctors agree on treatment and procedures that can be reassuring, but if other options are available to you it's important to know that. As far as surgery, your oncologist will give their opinion. If he/she doesn't think it is an option for you I would suggest that you meet with the surgeon directly to get their opinion. It is the surgeons who make the final decision.

    I wish the best for you and everyone on this site.

    Diane

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