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Thread: Worried ..

  1. #1
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    Worried ..

    I am a 51 year old male. I have had chest pains for about 6 months and testicular pain for about 6 weeks. I have had a chest CT with contrast on my chest about 2 months ago. The results from my pulmonologist were that I had 2 small white spots on my lungs which is normal. He said that it is most likely scar tissue. He told me that the pain was most likely caused by acid reflux and there was nothing else he could do for me. So my primary care physician sent me to an ENT specialist. He prescribed me Protonix which I have been taking for just over 2 months. The pain hasnít gotten any better but I figured that they knew what they were doing. Then about 6 weeks ago I started getting testicular pain and occasional sharp pains in my bladder. I was referred to an urinologist. He said that it was most likely prostatitas and gave me 5 weeks of anti-biotics. If those donít fix the problem he would do more tests including a CT scan. I am getting really worried as the pains in both areas arenít getting any better. My colonoscopy was normal as was my upper GI. There is defiantly something going on and it is gradually getting worse. I am lost on where to go next. My father passed away from lung cancer just under 2 years ago after not smoking for 37 years. I have never smoked a cigarette in my life but do smoke weed and worked in the chemical industry for 15 years. I am really worried about my 11 year old daughter seeing me go through what my father went through. This is consuming me and I am tempted to pay for a PET scan out of pocket to ease my worries. I would love some advice on what I should do or who I should see to help me figure out what is going on.

  2. #2
    Moderator Top User jorola's Avatar
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    I get you are worried. That is very obvious. However save your money. A CT, even a PET scan will not be able to let you know if those spots on your lungs are cancerous or not. Only biopsies can confirm if they are cancer or scar issues as suspected. Have you ever had symptoms of depression or anxiety? Your post sounds like you maybe have, even currently are experiencing symptoms of these conditions. A suggestion would be to speak to your doctor about these symptoms and feelings you are having as they can take on a physical manifestation ie chest pains. Or you can request your doctor to arrange a biopsy if they are willing to arrange it. However you just have not listed any other symptoms that raise red flags of concerns for cancer.
    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
    June 24 - tumor 1/3 the original size
    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

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this. Either you have located a group of completely incompetent doctors, or there is an as-yet undiscovered or possibly even non-physiological cause of your symptoms. Example: Our bodies can produce about 150 total symptoms. Constant worry, stress, anxiety can actually produce over 100 of those symptoms. Real symptoms, but the cause is not physical, being cognitive or psychological. Are you a nervous person? An anxious person? Your family and loved ones will know.
    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.

  4. #4
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    Thank you ....

    Quote Originally Posted by jorola View Post
    I get you are worried. That is very obvious. However save your money. A CT, even a PET scan will not be able to let you know if those spots on your lungs are cancerous or not. Only biopsies can confirm if they are cancer or scar issues as suspected. Have you ever had symptoms of depression or anxiety? Your post sounds like you maybe have, even currently are experiencing symptoms of these conditions. A suggestion would be to speak to your doctor about these symptoms and feelings you are having as they can take on a physical manifestation ie chest pains. Or you can request your doctor to arrange a biopsy if they are willing to arrange it. However you just have not listed any other symptoms that raise red flags of concerns for cancer.
    It sounds like you are winning a very tough challenge and my prayers will stay strong for you. Thank you for replying to my post. I hope that you are right as anxiety and depression are unfortunately a large part of my life. Doctor wants me to get a stress test which I will do, but the anti-biotics for the groin/bladder pain has yet to help. I do not believe that this could be stress related. Still have 3 out of five weeks left to go. Hoping they work so I can get on with a less stressed life. If they donít, itís further exploration. I really donít want to go through any more tests. Thank you again for your reply.

  5. #5
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    It looks like you are fighting an amazing tough battle. Much respect to you and my thoughts will stay positive for you. Thank you for your response and I hope that you are right. Depression and anxiety, check that box as it unfortunately has been a big part of my life. I can see this causing the pain in my chest. But the other pain in my bladder/groin area I am not sure.

  6. #6
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    Are you getting help and/or medication for the anxiety and depression?

  7. #7
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    Yes

    Quote Originally Posted by BigChris View Post
    Are you getting help and/or medication for the anxiety and depression?
    I take Seroquel and Zoloft ....lorazapham as needed.

  8. #8
    Hey Duge

    In the run up to my LC diagnosis I had many of the same tests as you especially upper GI. However, they easily spotted my LC in an x-ray. You, on the other hand, have already had a CT with contrast. If your pulm was ok I would be feeling comfortable with that. Chasing down these illnesses can be a real pain. I hope you get some relief soon.

    Take it easy on the lorazepam. Getting off of that can be a real bear.

    mike
    At the time - 46 yo male, non-smoker
    Sept 2012 - DX - One tumor NSCLC Squamous Cell Right Upper Lung
    Oct 2012 - TX - Treatment similar to Pancoast Tumor - Pre-operation radiation and chemo (5.5 weeks of IGRT and 3 cycles of Cisplatin and Etoposide)
    Dec 2012 - Surgery - Remove RUL, Surgical Pathology Report Adenocarcinoma T2N0M0
    Now - Wait, watch, & pray

  9. #9
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    Thank you for the reply .......

    Quote Originally Posted by mike.b View Post
    Hey Duge

    In the run up to my LC diagnosis I had many of the same tests as you especially upper GI. However, they easily spotted my LC in an x-ray. You, on the other hand, have already had a CT with contrast. If your pulm was ok I would be feeling comfortable with that. Chasing down these illnesses can be a real pain. I hope you get some relief soon.

    Take it easy on the lorazepam. Getting off of that can be a real bear.

    mike
    Thank you for replying. I donít take lorazapam often, a couple times per week at most. Relief is definitely what I seek and need. With a special needs 13 year old son and 11 year old daughter, I really need to get past this. If you donít mind me asking, what prompted you to get the tests in the first place? Part of me says to forget more tests and just deal with what the future brings and the other half of me is telling me to figure out what is causing my discomfort before it turns into a more serious matter. My father went through many tests and they did not catch the cancer until it reached stage 4. Unfortunately he passed away withiní a year of the diagnosis. My chest pain has gradually gotten worse over the last 6 months, and groin pain (serious aching and occasional sharp pains in my bladder area) over the last 3 months. Sounds like you caught the diagnosis early and doing great. How was it going through the treatment if you donít mind me asking.

  10. #10
    I had a weird cough that wouldn't go away. I first went to urgent care and they gave me a 1 week z-pak. Since the cough didn't go away I visited my PCP. PCP gave me a two-week z-pak. Cough still didn't go away so I went back to PCP. She had me get x-ray and upper GI. X-ray showed the nodule/mass.

    Funny thing, after my treatments & surgery, once I was off the narcotics, the cough came back! It's likely that my allergies and my PCP saved my life.

    I'm sorry about your dad. My mom also died of LC.

    mike

 

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