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Thread: Liver Mets unknown primary site - many questions

  1. #1
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    Liver Mets unknown primary site - many questions

    Hello to all. New here.

    I have liver mets that do not have a primary site yet. It was suggested that it would be most likely either lower GI or upper. But here is the problem and the questions.

    I had a colonoscopy done in 2007 with two precancerous polyps. Told to come back in three years. Had another one done in 2010 and was clean. Told to come back in 5 years. Had another done in 2015 and was clean. Not scheduled until 2025 as a result.


    In 2017 was diagnosed with lung cancer (non small cell Stage 1) in a single nodule. I am not eligible for surgery, so was given radiation only. This was in Sept 2017. Had first follow up CT scan with contrast in Jan 2018 and every two months thereafter until Sept 2018. Every time all clear.

    In Feb 2019 - 4 months later - another follow up scan, but this time it showed mets to the liver. Biopsy confirmed. Mets are too numerous and too large for any type of radiation or surgery. The report stated mets not from lung but suggestive from colon based on stain markers.

    My questions are:

    1. Is it possible for colon cancer to exist in the colon and not show up on CT or pet scans and yet form mets in the liver?

    2. Can colon cancer grow that fast? (4 months)


    BTW I am receiving treatment from a Top Tier Cancer Center that is rated one of the best in the country. So I trust my doctors, yet they seem to be a bit puzzled as well. I am to be scheduled in the coming weeks for both an endoscope and colonoscopy to try and locate the source of the mets. Was told this was necessary to be able to prescribe the correct chemo regiment for me. Because this is fast growing, they want to get the meds right the first time.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Welcome, bu very sorry to hear this. Yours is indeed a difficult case. Are they calling it Cancer of Unknown Primary? I'll admit those are a challenge. Have they done or are they planning a biopsy?
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
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    Quote Originally Posted by po18guy View Post
    Welcome, bu very sorry to hear this. Yours is indeed a difficult case. Are they calling it Cancer of Unknown Primary? I'll admit those are a challenge. Have they done or are they planning a biopsy?
    Yes...biopsy confirms metastasis of the liver undetermined primary site. Stain markers suggest colon cancer as primary. I am to see a GI doc next week to plan another colonoscopy and endo. Pet scan 22 months ago showed no signs of cancer anywhere in my body. I just don't understand how this could happen in such short of time span. Basically the last CT scan 4 months ago was clear.

  4. #4
    Super Moderator Top User Baz10's Avatar
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    Sculpin,
    indeed a puzzling situation, this being said it is not unknown for rogue cells eg, from LC or CRC to migrate and take up residence elsewhere.

    My eminent colon cancer surgeon spent some time in 2011 explaining that he was “convinced” he had I quote “got everything but he could not guarantee that a single malignant cell had not escaped to take up residence elswhere”.

    So, given you had lung cancer which with the liver are the two major volumetric processors of blood and at present no evidence of CRC involvement it suggests a best guess by the doctors at present.

    Hopefully the endoscopy or bronchoscopy whichever they decide and a colonoscopy may just indicate a primary.

    Normally I have to say that colon cancer developed slowly and tends to produce symptoms which you have it seems never experienced which makes the initial doctors thinking puzzling.

    Please keep us updated on developments.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
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    and dodging bullets in the meanwhile, too many bullets at moment.

  5. #5
    Moderator Top User Fourlegsgood's Avatar
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    Sculpin,

    I have no direct experience to add to anything that has already been said except to say that I share your bewilderment that you can go from a clear liver with one scan to another one 4 months later with numerous large mets. However, I suspect it is a 'well we are where we are and need to deal with it' sort of thing. Hopefully your medical team will come up with ideas and a way forward for you. Like Barry says, please keep us updated.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  6. #6
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    To All - Thank you for comments and ideas.

    Update: Saw the medical oncologist today and she stated that most likely that the liver mets are from the colon. However, it is also possible I have what is called Lynch Syndrome which is a genetic mutation that causes rapid cancer growth. If that is the case, it would answer why the cancer blossomed in just a few short months to a stage 4. She took blood samples and will have the genetic DNA testing done. Meanwhile I still need to have the colonoscopy done asap and then she will have the port installed to begin the chemo therapy.

    Wife is taking things pretty hard right now. She asked about prognosis and although I knew the answers (never told her), it was very hard on her. Should have braced her before hand, but didn't think she would ask the question, and I could let things settle down and then talk to her. A mistake I hope others don't make when faced with this type of disease. Best to be up front from the beginning with your spouse. They deserve to know. A mistake I most regret now.

  7. #7
    Super Moderator Top User po18guy's Avatar
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    Prognosis does not apply to any individual. It applies to a class of individual, for statistical purposes. The last time I had a (group) prognosis was 2009 and it was then "extremely poor." As to prognosis, in 2017 after reviewing my hundreds of pages of medical history, an infectious diseases doctor at the University of Washington stated that I had about a 0.5% chance of being alive. Some of our loved ones look at the numbers and worry. I focused on being compliant with everything that was under my power. I survived, as they say, against all odds.

  8. #8
    Moderator Top User Fourlegsgood's Avatar
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    Sculpin,

    Thanks for the update. Statistics are great for historical analysis but they are a very blunt tool for predicting individual persons prognosis in the future. However bad it looks, there are always a people who get through it. Your job is just to try to be of those. I have several friends who were Stage 4 Colon Cancer but are now disease free 5 years on.

    Listen to what the medics say and make decisions but above all do not give in. Mental fortitude does seem to play a role in all this as well as just the practical aspects of medicine.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  9. #9
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    Update:

    Primary site was found via colonoscopy. 10cm mass right side colon below the liver. Actually this is good news to me vs. having an unknown primary site. The only thing that made this unusual, is the rapid growth in such a very short time frame. Going back through all the medical records, ct and pet scans etc, this appears to have started sometime within the last 20 months.

    Now to wait on the genetic testing, as this can offer another arrow in the quiver as far as treatment goes. Will start on the iron supplement infusion Friday to bring the blood count up and will probably begin planning for the port installation in preparation for the chemotherapy. I don't know much more at this point, but feel very relieved. At least the road traveled now will be a familiar one when it comes to treatment plans.

    Will update as I know more.

  10. #10
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    Back from the oncologist. Will have 4 drugs 5-FU; Leucovorin; Oxaliplatin and Bevacizumab. I think the first three are given through the port at one time and the last drug is given with a pump for 2 days. Guess I should have asked for sure, but it didn't matter which drug is with the pump. I will have treatments every other week for the rest of my life. Currently still getting the iron infusions for the anemia due to blood loss in the colon.

    Was also advised might have another drug added if the white blood cell count drops too low. Neulasta? Not sure of the spelling but seen it on the TV commercials.
    Attaches to the back side of my arm.

    Right now, my biggest problems is dealing with the fatigue and discomfort from the liver mets.

    My first round should begin next week, most likely on Wednesday. Still waiting on insurance approval for all the additional drugs required besides just the chemo stuff to handle the side effects.

    Anyone familiar with the regimen that I will be using, please chime in and let me know how things worked for you.

    Thanks again to all.

 

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