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Thread: Upload PET Scan to get some advice?

  1. #1
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    Upload PET Scan to get some advice?

    Hello all,

    It's been a while since I've been on here lately, I haven't been doing well to say the least. If I post some findings of my PET Scan would someone be able to give me some advice on the terminology? I had an MRI done today but I'm sure I won't get those results until next week because of the holidays. My PET scan was done 2 weeks ago, they saw something in the pelvis/rectal area that required a better view. I don't like some of the findings and was wondering if someone could maybe break it down for me?

    I forgot to mention that I am Stage IV colorectal cancer with mets to the liver, lymph nodes, stomach, gallbladder. Had a LAR in 2015, 70% liver resection and gallbladder removed along with a stomach gist. Also had 34 Radiation treatments and lots of chemo. Had a temp. ileostomy to let the LAR heal, had the reversal but had so many issues down the road I ended up with a permanent colostomy in August of 2017. About a month ago I experienced my first bowel obstruction and spent about a week in the hospital, it cleared with an NG tube and didn't require surgery. During my stay in the hospital something showed up on a CT scan, Had the oncologist schedule a PET scan and I got the results. He told me it could be inflammation or a mass in the rectum. That brought me to today getting a rectal MRI, man that was fun!!!! That's in a nut shell, had more that went on in the last few years but I'm getting tired of typing. Was hoping someone could look at the PET scan and tell me what you think? I'm not sure if uploading that info is allowed here or not?
    Last edited by dylskee; 12-25-2018 at 04:27 AM.
    Stage IV Colorectal Cancer Fighter

  2. #2
    Top User mojo's Avatar
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    Sorry you havenít been doing well. I personally would not be able to look at pet scan and tell you what it is. Can you talk to your doctor about this. Or is there a patient navigator involved with your dr, who then just sit down and go over this? I donít think anybody here would feel confident and reading someoneís pet scan I wouldnít be able to read a pet scan at all. I saw my husbands pet, when he had cancer and the doctor always explained everything to us. I wish you well but I think your best bet is to talk to your doctor to make sure you get the correct information. I hope things go better for you. Sharon
    Last edited by mojo; 12-25-2018 at 04:48 AM. Reason: Spelling

  3. #3
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    Thank you, this is just the report. My oncologist seems to keeps things light and not putting too much concern into the scan for some reason? He is a great doctor, he has referred me to a colorectal specialist but I'm sure I won't hear from him for at least a week? Just looking for some insight from people who have already been down this path?
    Stage IV Colorectal Cancer Fighter

  4. #4
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    Here's a piece of the report, excluding my name/birth date etc....


    STUDY: PET/CT scan.

    INDICATION: Restaging rectal cancer. Pulmonary nodules. Status post
    chemotherapy 2016, radiation therapy 2015.

    COMPARISON:
    CT abdomen and pelvis 11/26/2018, 8/8/2018.
    CT chest 8/8/2018.
    PET scan 6/9/2017.

    PROCEDURE: 16.2 mCi 18-FDG. One hour delayed positron emission
    tomography from the base of skull to mid thigh. CT obtained concurrently
    for the purpose of attenuation correction. Image reconstruction in axial,
    sagittal, and coronal pl
    anes with review of PET, CT, and PET/CT fusion
    data.

    Glucose level at time of exam: 102 mg/dL.

    Findings:
    PET: There has been interval increase in size of 2 right apical and
    single left apical nodules by approximately 1 mm each. Due to the small
    size of the nodules it is difficult to accurately measure size
    differences which are visually conspicuous. The largest medial right
    apical nodule, 8 mm, has a component of pleural tethering and maximum SUV
    of 1.7. The lesion remains at the margin of size sensitivity for PET
    characterization.

    There is intense localized metabolic activity in the presacral space
    contiguous with/impressing upon posterior Hartman's pouch with maximum
    SUV 7.5. On the unenhanced CT transmission exam this correlates with an
    approximate 5 x 5 cm presacral mass and represents interval progression
    of suspected recurrent disease on prior PET scan. Previously seen left
    pelvic sidewall node is not identified.

    Remainder of isotope distribution is
    physiologic including mild activity
    at the left lower quadrant colostomy.

    ADDITIONAL CT FINDINGS: No new significant incidental finding.
    Nasogastric tube has been removed.
    Again seen are postsurgical changes of partial right hepatectomy and
    cholecystectomy.
    Stable small high density cyst anterior interpolar left kidney.
    Small bowel loops are fluid-filled and mildly prominent, significantly
    improved from 11/23/2018.
    Constipation throughout the colon to the ostomy site.

    IMPRESSION:
    1. Metabolically active presacral mass, likely recurrent malignancy.
    2. Evolving biapical lung nodules suspicious for metastatic disease.
    3. Incidental findings as noted.

    RECOMMENDATION:
    If clinically warranted, the presacral mass and right apical nodule(s)
    would be amenable to CT-guided percutaneous biopsy (case reviewed with
    Interventional Radiologist).

    Thank you for the courtesy of the consultation.
    Last edited by dylskee; 12-26-2018 at 09:23 PM.
    Stage IV Colorectal Cancer Fighter

  5. #5
    Super Moderator Top User po18guy's Avatar
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    What it means is that if you are not being treated at Dana Farber (or another NCI designated comprehensive cancer center), you should be! I can attest to the fact that second opinions save lives. if you are being seen at such a center, good! If not, I strongly urge you to seek another opinion.
    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.

    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.

  6. #6
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    I have not switched to Dana Farber yet but that is in my future plans if I don't like the treatment plan going forward with this new specialist I'm currently seeing. I just switched to him and this will be my second visit with him to discuss the MRI results, which I'm still waiting to hear the results! I hate that high level of anxiety waiting for that phone call with the results, I'm going crazy right now! But thank you for the replies, sorry if I seem a little crazy right now but I'm really stressed out about the last PET scan and the thought of doing chemo and surgery again! I'm not sure if I have the strength to go through this again? I'm extremely tired and beat down, I'm still 30 lbs lighter than I was before I started all of this, I can't seem to put the weight back on. Anyway, thank you and I pray that I get good news soon!
    Stage IV Colorectal Cancer Fighter

  7. #7
    Super Moderator Top User Baz10's Avatar
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    dylskee,

    The report stating the obvious, is just that based on comparative interval scans which are interpretations by the radiologists and again stating the obvious a peer review or indeed a further scan at a eminent cancer facility certainly would not come amiss.
    At least this action would give you the opportunity of in reality a independent review as well as questioning the upcoming treatment plan.
    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.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  8. #8
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    Hi Barry,

    Thank you for your reply. That was my PET scan from a couple of weeks ago, I have since had an MRI on Christmas Eve and anxiously awaiting for those results! I think they will give me a better understanding of what's going on. This is from a new hospital and a colorectal specialist that my oncologist has recommended. Depending on his game plan, I will probably switch to Dana Farber which is honestly the best in my area. It's about an hour away from me in Boston, MA. I had some surgeries in Boston back in 2015 and it was a nightmare with all the traffic. I will suck it up and deal with the traffic if it can save my life! Thanks again for your reply, have yourself a great night!
    Stage IV Colorectal Cancer Fighter

  9. #9
    Super Moderator Top User Baz10's Avatar
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    dylskee,
    Sounds like a well thought out plan.
    FYI
    Our son brought his 787 yesterday PM in Boston and leaves back to U.K. today.
    All the very best for the New Year and many years beyond.
    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.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  10. #10
    Experienced User
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    Thank you very much Barry, I wish you and your family the same!
    Stage IV Colorectal Cancer Fighter

 

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