A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: I'm a bit scared

  1. #1
    Newbie New User
    Join Date
    Mar 2019
    Posts
    5

    I'm a bit scared

    Hi there. I'm not sure if I'm jumping the gun here but my doctor says that I may have cancer somewhere that is causing metastasizing lesions in the liver. I went to have a last minute cat scan to see if I had kidney stones. Here is what came up on the scan:

    Multiple patchy irregular hypodense foci are demonstrated throughout the liver and appear most notable in the left hepatic lobe. The largest of these left hepatic hypodensities measures approximately 3.4 x 3.5 cm in axial dimension. The largest right hepatic hypodensity is noted in the inferior portion of the right hepatic lobe and measures 6.9 x 1.6 cm. These findings are suspicious for infiltrative masses.

    IMPRESSION: 1. Patchy heterogeneous appearance of the liver with apparent infiltrative masses is highly suggestive of a neoplastic process. Recommend dedicated CT of the liver with contrast for further evaluation. Consider colonoscopy as these findings may be secondary to metastatic disease.

    Did anyone else start like this?

    smip

  2. #2
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Posts
    3,912
    Sorry these findings have you understandably concerned. Since as of yet, and we sincerely hope that it will not be determined to be the case of a cancer diagnosis, I have moved your thread here to our Worried Forum as that is where those that are undiagnosed should post. Plus, our Liver Cancer forum is not very active so you may find more responses by having your thread placed here.

    While I can not provide any insight into the results, which we tend to not interpret as we are not medically qualified, there may be someone that can offer their thoughts relating to your concern.

    When is your next appointment? I would make sure that these findings while keeping in mind that have stated you do not have cancer, are explained to you by your doctor. Without further testing, the doctors can not determine if it is cancer and at this point, they are looking to rule it out.

    Stay the course and follow through with the necessary tests your doctor suggests.

    Please feel free to check back for responses and to let us know how things are going.

  3. #3
    Newbie New User
    Join Date
    Mar 2019
    Posts
    5
    Thank you Lisa1962. I did not see this forum here and this is a more appropriate forum to be on before diagnosis. With that being said, I had another cat scan with dye. My doctor said that they believe that the cancer is coming from my colon. He made an appointment to have a PET scan focusing on the head, chest, stomach and lower abdomen. The reason why they feel the cancer is coming from my colon is because there is a thickening somewhere in there. I guess once I find out then I can be moved to a forum that is appropriate for my problem. He put in a rush for the PET scan. Hopefully I'll get a call to let me know when it is going to happen.

    smip

  4. #4
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    584
    Quote Originally Posted by smip View Post
    Thank you Lisa1962. I did not see this forum here and this is a more appropriate forum to be on before diagnosis. With that being said, I had another cat scan with dye. My doctor said that they believe that the cancer is coming from my colon. He made an appointment to have a PET scan focusing on the head, chest, stomach and lower abdomen. The reason why they feel the cancer is coming from my colon is because there is a thickening somewhere in there. I guess once I find out then I can be moved to a forum that is appropriate for my problem. He put in a rush for the PET scan. Hopefully I'll get a call to let me know when it is going to happen.

    smip
    Smip, sorry you have had to find your way here, but it is a good place to be to find support and get some clarity. Sounds like you have a Dr and others heading up a strategy to pursue your diagnosis. Do keep us informed as to happens and try to stay as fit as you can be for whatever you learn!

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  5. #5
    Newbie New User
    Join Date
    Mar 2019
    Posts
    5
    Thank you Doug. I read your history there. What does CEA and NED mean? I am wondering if I should keep a diary of this myself. It would keep me clear on everything that has happened so far.
    Everything that I have read so far about metastasis of the liver means that cancer is probably a stage IV cancer. I have so many things wrong with me. I have COPD, AFIB, CHF, Coronary artery disease, 2 heart attacks, heart stent, Emphysema, Asthma, total right and left hip replacement, total right elbow replacement, Arthritis in my back, knees, hips, hands and Diabetes just to name a few things.
    At this point in the game I'm even wondering if I should, or would accept any treatment. Mainly because of the CHF and COPD emphysema diagnosis. It's nice however to be able to go someplace to get my thoughts off my shoulders and complain to folks that know what I'm going through. I'm a bit confused at my husbands reaction. He has been my caregiver for quite some time now, and since this came about he does treat me a bit more Ö. how can I saw this Ö. "handicap". He makes quick meals and stuff as to take some burden off. However, he does not really talk about it with me very much. He, himself is a cancer survivor. He had a HG T1 TCCB (High grade transitional cell cancer of the bladder) He had the surgery to remove the tumor and he went through the BCG treatments weekly. He is now over 5 years cancer free.
    Anyway, I'm just babbling at this point. But thank you for your response and understanding.

    smip

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,261
    I will say this: it does not matter how we start - it matters how we finish. If you are in the states, I strongly urge you to consult with a National Cancer Institute designated comprehensive cancer center (if you are not already). Find the nearest facility here:

    https://www.cancer.gov/research/nci-...r-centers/find
    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.

  7. #7
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    584
    Smip,

    You have your hands full! Look at all the difficulties you've dealt with and handled. As PoGuy has suggested, you need to get to a cancer treatment center and answer the question, "do you have cancer?" I believe that can be done with additional tests and consultation.

    CEA is, as I have been told, a cancer embryonic antigen that shows in the blood from embryonic cancer cells. It isn't a good diagnostic tool, but is used to monitor the blood of cancer patients. Generally increases suggest more information is necessary, CTScan, MRI or biopsy depending on the cancer. But these are decisions for DRs to make.

    NED is "no evidence of disease" which is where I am now five years following treatment.

    You might give us some additional information: Age, when the previous incidences of disease occurred, might help us with suggestions. Hang in there and try to get more information. As for a diary? It is something I have done often in my life and this experience of the past five years seemed to be another way for me to capture what was happening, when. I am glad to have done that and often refer back to see when I had what experiences, it helps me with my memory of events.

    Keep us posted as to how things progress. Stay positive!

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  8. #8
    Newbie New User
    Join Date
    Mar 2019
    Posts
    5

    just got my ct scan with dye

    Quote Originally Posted by Doug K View Post
    Smip,

    You have your hands full! Look at all the difficulties you've dealt with and handled. As PoGuy has suggested, you need to get to a cancer treatment center and answer the question, "do you have cancer?" I believe that can be done with additional tests and consultation.

    CEA is, as I have been told, a cancer embryonic antigen that shows in the blood from embryonic cancer cells. It isn't a good diagnostic tool, but is used to monitor the blood of cancer patients. Generally increases suggest more information is necessary, CTScan, MRI or biopsy depending on the cancer. But these are decisions for DRs to make.

    NED is "no evidence of disease" which is where I am now five years following treatment.

    You might give us some additional information: Age, when the previous incidences of disease occurred, might help us with suggestions. Hang in there and try to get more information. As for a diary? It is something I have done often in my life and this experience of the past five years seemed to be another way for me to capture what was happening, when. I am glad to have done that and often refer back to see when I had what experiences, it helps me with my memory of events.

    Keep us posted as to how things progress. Stay positive!

    doug
    I just got my results from my ct scan with dye. It reads as follows:

    TECHNIQUE: CT liver without and with contrast. Sagittal and coronal reformats were obtained.

    FINDINGS: Lung bases demonstrate minimal dependent atelectasis. No cardiomegaly.

    ABDOMEN: Redemonstrated multiple ill-defined hepatic lesions demonstrating early anterior enhancement without complete filling on the delayed imaging most consistent with malignancy, primary versus secondary. Cholecystectomy changes redemonstrated. No ascites.

    Adrenal glands, spleen, pancreas and kidneys are unremarkable. No bowel obstruction.

    Moderate atherosclerosis disease. No abdominal aortic aneurysm. No gross adenopathy. Diffuse osteopenia. No focal osseous findings. Neurostimulator device redemonstrated.

    IMPRESSION: Irregular heterogeneous enhancing hepatic masses again most consistent with a neoplastic process. Recommend correlation with tissue biopsy and dedicated CT chest, abdomen and pelvis or PET/CT for further evaluation.

    Is that better than it being a metastasizing one? To me it's saying that it my be a primary cancer and not coming from somewhere else. To me that's better isn't it? I have my PET scan done on wed at 8:15 in the morning. They said the results should be the same day or the next day. This waiting to see what it is instead of going in to see is killing me. Literally!!! LOL

  9. #9
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    584
    Hang in there, the Docs seem to be getting as much information as they can with out being invasive. They have been doing this work awhile and seem to have some pretty tight protocols for treatment. Keep on top of things with them and have your questions with you to present to them when the time comes. It was helpful to me to have someone with me through these meetings with Docs to help me hear what was being said. Take care of yourself as thing progress.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  10. #10
    Newbie New User
    Join Date
    Mar 2019
    Posts
    5
    Update:
    Well I got my PET scan done. With every scan it seems to be getting better. Not out of the woods yet, but not as bad as it was in the beginning. Here is what my PET scan says now:

    FINDINGS:
    Multiple hypodensities in the left hemiliver, most of which are larger than 1cm, have FDG uptake that is similar to the adjacent liver parenchyma but are too small to characterize reliably. No other foci of uptake are seen to suggest a primary tumor elsewhere in the body.

    IMPRESSION: Multiple hypodensities in the liver with uptake that is similar to the adjacent liver parenchyma. A benign etiology such as hemangioma or low grade neoplasm such as a hepatocellular carcinoma could cause this appearance. Recommend correlation with dedicated liver MRI for further characterization. No other abnormal foci are seen elsewhere to indicate a primary tumor outside of the liver.

    Sooooo It's looking better than it did. I wish they would just take a biopsy to see exactly what it is already. They've taken enough pictures of my body it's not even funny already.
    Thoughts anyone? By the wording... IF it is cancer it looks like hepatocellular carcinoma or HCC. I though you can only get that when someone has a drinking problem and gets cirrhosis on the liver. However, reading further someone with diabetes and is overweight can get it also from a fatty liver. Whelp that's me. So the next step they are doing an MRI. That's not until the 25th. So still waiting for answers.

    smip

 

Similar Threads

  1. New Poster - Bit Scared
    By chrisnewton in forum Worried About Possible Cancer
    Replies: 7
    Last Post: 12-21-2016, 11:32 AM
  2. A Bit Scared..What Would You Do?
    By HappyOcean in forum Worried About Possible Cancer
    Replies: 8
    Last Post: 10-10-2015, 06:48 PM
  3. Scared scared and more scared....lump under my jaw line/ chin
    By GayleGardner in forum Worried About Possible Cancer
    Replies: 7
    Last Post: 02-20-2015, 04:32 AM
  4. A bit of good news to share!
    By adr22367 in forum Lung Cancer Forum
    Replies: 0
    Last Post: 08-09-2005, 01:52 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •