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Thread: What steps have to go through insurance company to get approval for cancer tests?

  1. #1
    Newbie New User
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    May 2015
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    Pericardial Effusion Lymphoma but couldn't diagnose what kind of cancer cells

    Hello everyone,

    6 weeks ago my mom had a routine check up with her cardiologist and complained about shortness of breath. The doctor sent her to inpatient and the tests showed she had a pretty serious case of pericardial effusion and was admitted to a hospital. 5 days later, they decided to perform pericardiectomy on her. they suctioned out at least a gallon of water! Hematologist found malignant tumor cells in the water. After this discovery, they sent the water to pathologist to find what kind of cancer she had, but the pathologists could not find any trace of cancer cells. They then perform all kinds of imaging tests--CAT scan, PET scan, you name it, even a bone marrow aspiration biopsy. Couldn't find cancer anywhere. Thus when she got out of the hosptial a month later, it was inconclusive whether she has cancer, or not. Hematologist suggested that may very likely be Lymphoma.

    A week after she got out of the hospital, my sister told me she had become weaker and weaker( my mom and my sister live in Taiwan and I live in the States). She also started to have more and more frequent fever, a couple days ago as high as 39 degree celsius (102 F). For the past week, she also got a very bad case of skin rash, she's extremely tired all the time and feel very weak. The last few days she started having diarrhea after she eat.

    Her follow-up appointment with the hematologist 1 week ago showed no change the heart and no difference in blood work done when she was discharged from the hospital. However, the hematologist told my mom to prepare her body (to get in better health by drinking those fluids supplement for cancer patient) for chemo. Told her she wouldn't survive chemo if she received it in her current condition because she's too weak. It's very confusing and frustrating because they still couldn't find what type of cancer cells she has after one month of test after test.

    Does anyone have these experience themselves or their relatives or friends?

    Thanks So Much!

    Shannon

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    10,340
    Sorry to welcome you here under these circumstances. Since your mom has no diagnosis, I have moved your post to the "worried" forum. I am wondering just how the hematologist could detect cancer cells, but the pathologist could not? I would not take the report of the hematologist as correct, as only a pathologist can confirm the presence of malignant (cancerous) cells. Since your mom already has a cardiologist, it seems that she has a preexisting heart condition? As I recall, fluid build-up can be a sign of poor circulation, but that is simply a guess.
    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.

  3. #3
    Newbie New User
    Join Date
    May 2015
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    9

    Very irrigular symptoms mimic lung cancer lately.

    I've had a mild case of chronic bronchitis for about 10 years. I started with this consistent and persistent small coughs with little mucus but persistent with every little cough. Lately, I've experience more serious consistent coughs, Sometimes, when I'm lying down or just about beforeI wake up, I have difficulty breathing (not so much the inhale, but mostly exhale), like I could not exhale the air for a couple of seconds, and this will last about 10 breaths when I'm lying in bed. The past week, I fell twice because I lost balance ( not running, no uneven surface), and feel fatigue almost all day (the last 2 or 3 weeks). This morning I had a more severe cough and found a lot of discolored mucus (some kind of red, but doesn't look like the bright red color of red). I also experiencing hard time spelling that I didn't have this problem at all. I was guessing the unsteady gait, tiredness, because of extreme stress the last 2 months and I started taking Xanax and Ambien at a pretty high dosage for about 3 months, the 10mg of Ambien might have caused the sleepiness and tiredness all day.

    The purple-ish color of the mucus this morning is the first time I see it in this color, usually the mucus was a very light yellow, almost undetectable yellow.

    Does anyone have similar experience who's diagnosed with lung cancer?

    I checked some website on lung cancer, I fit all the symptoms. What specialty doctor should I see to do the diagnostic check? And besides chest x-ray, what are all the other procedures might be for the doctor to diagnose?

    My father passed away from small cell lung cancer about 10 years ago at 83, he was a heavy smoker his entire life. I'm 52, I smoked a pack a day from 20 to when I was 39. I've never smoked one cigs after I quit in 2000.

    Does anyone have similar experience who's diagnosed with lung cancer? And I'm wondering how much it would cost ball park figure to do all the diagnositic check if I pay out of pocket?

  4. #4
    Newbie New User
    Join Date
    May 2015
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    9

    Very irregular symptoms mimic lung cancer or pnewmonia

    I've had a mild case of chronic bronchitis for about 10 years. I started with this consistent and persistent small coughs with little mucus but persistent with every little cough. Lately, I've experience more serious consistent coughs, Sometimes, when I'm lying down or just about beforeI wake up, I have difficulty breathing (not so much the inhale, but mostly exhale), like I could not exhale the air for a couple of seconds, and this will last about 10 breaths when I'm lying in bed. The past week, I fell twice because I lost balance ( not running, no uneven surface), and feel fatigue almost all day (the last 2 or 3 weeks). This morning I had a more severe cough and found a lot of discolored mucus (some kind of red, but doesn't look like the bright red color of red). I also experiencing hard time spelling that I didn't have this problem at all. I was guessing the unsteady gait, tiredness, because of extreme stress the last 2 months and I started taking Xanax and Ambien at a pretty high dosage for about 3 months, the 10mg of Ambien might have caused the sleepiness and tiredness all day.

    The purple-ish color of the mucus this morning is the first time I see it in this color, usually the mucus was a very light yellow, almost undetectable yellow.

    Does anyone have similar experience who's diagnosed with lung cancer?

    I checked some website on lung cancer, I fit all the symptoms. What specialty doctor should I see to do the diagnostic check? And besides chest x-ray, what are all the other procedures might be for the doctor to diagnose?

    My father passed away from small cell lung cancer about 10 years ago at 83, he was a heavy smoker his entire life. I'm 52, I smoked a pack a day from 20 to when I was 39. I've never smoked one cigs after I quit in 2000.

    Does anyone have similar experience who's diagnosed with lung cancer? And I'm wondering how much it would cost ball park figure to do all the diagnositic check if I pay out of pocket?

  5. #5
    Moderator Top User
    Join Date
    Feb 2011
    Posts
    597
    The symptoms you describe are certainly worth checking out. However, it's a big jump to assume its cancer. You're best bet is to start with your family docto. If a specialist is then needed, whether ENT, pulmonary, or oncologist, your doc is in the best position to help you figure out who you need to see ne

    Around here, our motto is that you don't have cancer until your oncologist tells you that you have it.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  6. #6
    Newbie New User
    Join Date
    May 2015
    Posts
    9

    Lung Cancer scare

    I did cough up rusty color blood once about 6 months ago. I coughed up a pink color mucus today. The cough started after I visited my family--mom, sister, dad were all heavy smoker. After that visit (about a month) I started having little coughs that does not produce yellowish mucus, and this started around 2003 or 2007. The small cough for about all this time, but persistent cough with much more mucus all day everyday started about 2 years ago. I did smoke from when I was 19 and quit completely when I was 36. I'm 52 now. I made an appointment for scans next Tuesday. Of course waiting is the worst thing.

    Is weakness in limb, tiredness, lost of appetite an advanced stage of cancer?

  7. #7
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Posts
    1,729
    realtypro I am sorry you have concerns but you are getting ahead of yourself here. I acknowledge you have medical concerns but cancer should be at the bottom of the list of medical conditions that are gone though and eliminated as your doctor goes though appropriate testing. There are other conditions which do produce mucus and a persistent cough and even blood such as asthma and COPD. Yellow mucus would actually tend to lean towards infection as well.
    It is good you are seeing your doctor and having testing done to get to the bottom of this. However please keep in mind the only test that can confirm the presence of cancer is a biopsy (either a tissue sample or fluid sample from the lungs). Even if some spots are seen on the scans that does not mean you have cancer ok?
    We share this information to help educate people, reduce anxiety and encourage people to speak to their doctors and not research on the internet and believe everything they "google." Google is a mortician and if you google a stubbed toe symptoms he will diagnosis you with cancer for that too.
    Bottom line is focus on other things and not worse case scenario. Yes I have been there and know the feeling. I hope that things turn out well and that you will have no need to become a member here. However, although I am not a dr, I feel that it is unlikely you will need to.
    Best of luck, let us know how things turn out.
    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  8. #8
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,340
    Quote Originally Posted by realtypro888 View Post
    Is weakness in limb, tiredness, lost of appetite an advanced stage of cancer?
    Yes.

    It also applies to thousands of non-cancerous conditions.
    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.

  9. #9
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Posts
    3,961
    realtypro888:

    I agree with what the others have written here. I also have merged your other started thread from April, 2018 with this newly created thread since you are asking the same questions and experiencing the same issues from a few months ago.

    Did you not see a doctor back in April? We can not guess as to the cause of your health issues and only can say they do warrant investigation. As Defens suggested back in April, start with your GP. If your GP feels further testing is required, then referrals will be made.

    Good luck to you and feel free to update here on this thread, once you have seen a doctor.

    Lisa

  10. #10
    Newbie New User
    Join Date
    May 2015
    Posts
    9

    What steps have to go through insurance company to get approval for cancer tests?

    Hi everyone, I'm new here. I'm not diagnosed yet, but I have ALL the lung cancer symptoms for over 4 years now. I have ALL the symptoms here:

    A cough that does not go away or gets worse
    Coughing up blood or rust-colored sputum (spit or phlegm)
    Chest pain that is often worse with deep breathing, coughing, or laughing
    Hoarseness
    Weight loss and loss of appetite
    Shortness of breath
    Feeling tired or weak
    Infections such as bronchitis and pneumonia that donít go away or keep coming back
    New onset of wheezing

    I'm wondering because I live in the States and the insurance here is kind of all over the map depending on which network you're enrolled, if you're in the States, what are the steps you ask the primary care doctor to do screening and testing, what did the doctors do to diagnose it, and what kind of symptoms you each noticed? What are the tests done for diagnosing lung cancer?

    I will go see a primary doctor on Monday. I've been so busy with work I completely ignored my health for the last 4 years. I'm really scared because I have ALL of those lung cancer symptoms, now I'm starting to lose appetite and weight. My father passed away 10 years ago from Lung Cancer. By the time he was diagnosed (doctor noticed he lost so much weight and he lost appetite, a cold and cough that wouldn't go away--the same I experienced now), he only lived 6 weeks after they suspected he had lung cancer.

 

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