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Thread: I think you have lung cancer!

  1. #1

    I think you have lung cancer!

    The words my GP said after I had a chest X-ray,

    This is how it evolved

    16/5. Saw gp for an annoying cough I had had for a couple of months, nothing out of the usual there as my asthma always makes me cough.. I did have a minute speck of blood in my mucous. Was referred for X-rays

    18/5. GP states there is a lesion in my right upper lobe and sends me for a CT.

    21/5. CT

    23/5 CT results show a spiculated lesion in the right upper lobe, slightly enlarged Hilar nodes and an opacity on the spleen. Referral to respiratory specialists at John Hunter Hospital.

    30/5 PET scan

    31/5. Respiratory specialist appointment. Thankfully only the one lesion glowed, nothing in the spleen or lymph nodes. He believes I have bronchoalneolar cancer . He had booked an appointment with a surgeon the next day.

    1/6. Surgeon wants to remove upper lobe as soon as possible as the lesion is sitting at the bottom of the lobe and he does not want to cross the fissure to the lower lobes. Booked in for Lobectomy via thoracotomy 4/6..

    4/6 upper right Lobectomy and wedge resection of lower lobe performed. Lymph nodes removed for sampling.

    9/6 chest drains removed
    10/6 small pneumothorax
    11/6 home sweet home, and the anxious wait to see if I’m cured.
    Mum - Age 65
    July 12 - Onset of severe lower back pain and pathological fractures of L3 and L4
    Sep 12 - Multiple admissions for pain
    Oct 12 - Hospital admission and misdiagnosed as Multiple Myeloma then Lymphoma.
    Oct 12 - Bone biopsy and Marrow aspiration confirmed ES-SCLC with bone and lymph mets.
    Nov 12 - Commenced first round of chemo with little side efffect, 6 cycles planned.
    Nov 12 - Radiotherapy x 5 to spine with excellent pain relief results
    Feb 13 - Continues to weaken, not tolerating chemo well. Onc happy with scans.
    Mar 13 - Chemo failed, Rapid deterioration. Hospitalised for 6 weeks for palliative radiation on humerus which fractured, and on skull where tumor pressing on eye causing blindness.
    19 Apr 13 - Awaiting discharge for home palliative care.
    20 Apr 13 - Discharge cancelled due to developing pneumonia
    24 Apr 13 - My dear mum passed away today and is finally at peace.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Good grief! You are much stronger than you know! It certainly sounds to have been caught in time - let us hope and pray that it was. May your recovery go more smoothly than it has. You certainly deserve a holiday after this.
    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
    Administrator Top User lisa1962's Avatar
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    3,854
    Natalie:

    Sorry to hear this but the good news is, if pathology proves existence of cancer cells, sounds as if caught in the very early stages and a curative outcome is likely.

    Keep us posted and may you have a speedy recovery from surgery.

    Lisa

  4. #4
    Thanks, yes it all happened so fast, it was such a shock to hear those words. I felt perfectly fine. Luckily I was in good shape as we had all been on the CSIRO total well-being diet for the last few months and had also bought a home gym for strengthening. After looking after my mum who passed from SCLC and my dad who passed from Lymphoma in January this year, the last thing I expected to hear was that I had cancer too. At this stage the surgeon believes that it has not spread and was contained in the upper lobe, but it will be nice to have that confirmed by pathology. The surgery was aimed at a cure. It did seem strange going straight to surgery without a biopsy though.
    Mum - Age 65
    July 12 - Onset of severe lower back pain and pathological fractures of L3 and L4
    Sep 12 - Multiple admissions for pain
    Oct 12 - Hospital admission and misdiagnosed as Multiple Myeloma then Lymphoma.
    Oct 12 - Bone biopsy and Marrow aspiration confirmed ES-SCLC with bone and lymph mets.
    Nov 12 - Commenced first round of chemo with little side efffect, 6 cycles planned.
    Nov 12 - Radiotherapy x 5 to spine with excellent pain relief results
    Feb 13 - Continues to weaken, not tolerating chemo well. Onc happy with scans.
    Mar 13 - Chemo failed, Rapid deterioration. Hospitalised for 6 weeks for palliative radiation on humerus which fractured, and on skull where tumor pressing on eye causing blindness.
    19 Apr 13 - Awaiting discharge for home palliative care.
    20 Apr 13 - Discharge cancelled due to developing pneumonia
    24 Apr 13 - My dear mum passed away today and is finally at peace.

  5. #5
    Senior User
    Join Date
    Jun 2017
    Posts
    115
    My GP said the same words to me after a chest Xray. It sounds like every one moved quickly and that should be reassuring to you as from what you said your cancer was caught early! Hopefully your pathology report will come back good and then you will have some peace of mind. I'm not sure why they didn't do a biopsy before surgery. I had a lung biopsy but my lung collapsed so then I wasn't a candidate for surgery so had radiation instead. It sounds like you are living a healthy life style so your ahead of the game already. Wishing you the best in your recovery and good test results.
    Linda

  6. #6
    Quote Originally Posted by LLC View Post
    My GP said the same words to me after a chest Xray. It sounds like every one moved quickly and that should be reassuring to you as from what you said your cancer was caught early!
    Yeah, my experience was the opposite. It was months between imaging, biopsy, and treatment. To make matters worse, I remember receiving a magazine from the local hospital. The cover story was of a woman who came into the emergency room and left the hospital 5 days later with part of her lung removed!

    Good luck with your path report!
    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

  7. #7
    Yes, it was all very fast. There was quite a discussion about whether or not to do a biopsy as there were risks either way. The concern with doing a biopsy was the difficult location of the lesion and the probability of not getting a good enough sample for cytology. Regardless of what the lesion was, even if it was some obscure type of fungal or tuberculosis infection, then it still needed to be removed at that size. The specialist and surgeon both recommended immediate surgery due to the lesion being so close to the fissure separating the lobes. They did not want to give it time to migrate. It was a calculated risk and only time will tell if I chose the right path. With my age and general good health on my side the long term deficits from the surgery should be minimal. The long term gains of a cure outwayed the negatives of having the surgery in my mind. Regardless of what the lesion was it still had to come out.

    I spent 8 days in Hospital all up and my pain was well managed with an extra pleural infusion and Fentanyl PCA ,now just on oral Targin and getting stronger everyday.
    Still waiting for a difinitive diagnosis but at this stage it looks like the malignancy was quite small and blocked a part of my lung which then caused an abscess. It is this formation of the abscess that was my lucky break as it was quite large and more likely to be causing the symptoms than the actual malignancy. Provisional pathology report shows no spread outside the tumour itself.

 

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