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Thread: Mid-diagnosis - Tonsil Cancer

  1. #1
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    Mid-diagnosis - Tonsil Cancer

    Hi All - Been reading blogs and forums trying to get more info. I am in the middle of diagnosis, but pretty much know where I am.

    Background: I am a 49 year old married father of 4. My wife and I celebrated our 25th wedding anniversary on September 3rd.

    I'm used to getting sore throats and swollen lymph nodes. But, recently I had a lymph node swell on only one side which was unusual. I told myself that if it didn't get better, I was going to see the doctor. I gave it a week. Well, Friday, September 20th, I was able to get in to see my GP. We chatted for a bit about why I was there and he took a few notes. Then he said, let's take a look. He felt my neck and his exact words were: "holy crap, that suckers huge!". He scheduled a CT scan stat.

    By 6:30 that evening I was having a CT scan with contrast. Monday, September 23rd just before 9:00 a.m. he called. He said that the CT scan was abnormal and that I had a tonsillar mass that he suspected for cancer. He also said that the swollen lymph node was suspicious for metastasis. He had already spoken with an ENT and recommended 3 things:

    1. An Interventional Radiology referral for biopsy and diagnosis.

    2. A PET/CT scan to look for cancer in other areas of the body.

    3. An ENT referral for disease management.

    I had the PET/CT on September 25th. It came back negative for other areas, but confirmed the original suspect area. I had the biopsy yesterday and results are pending, but I am pretty sure where this is headed.

    I want those of you reading to know that I am encouraged by your stories. My mother passed of liver cancer having beaten breast cancer, so my first reaction was visceral. I have four kids and I never dreamed that not seeing them grow up was a possibility. I am lucky that I have great healthcare and a strong support structure both at home and at work (though my co-workers and kids don't yet know).

    Thanks for letting me hang around and maybe my journey can help others. I am sure my life will never be the same.

    John

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear this, but it sounds like doctor is placing cart ahead of horse. Lots of things look like cancer, but are not. Common lymphoma symptoms are identical to mononucleosis. We are easily lead astray by too much information and assign ourselves a death penalty when it may be just viral. 2019 has been a very unusual year for unknown viruses.

    Wait and see what the pathologist thinks. Even then, I would obtain a second opinion on the biopsy sample.
    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
    Moderator Top User IndyLou's Avatar
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    I think your doctor is taking the right approach; your story does not seem a whole lot different from mine, and you're at an age where—when you present with the symptoms you have—its reasonable to do the tests your doctor is performing.

    That said, take things one step at a time. You said yourself, you routinely get swollen lymph nodes. Still, I think this is better than your doctor prescribing an antibiotic, and waiting a month or two.

    Please keep us posted on your progress.

  4. #4
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    Thanks and I hope you are correct. However the CT scan w/contrast and the PET scan are not encouraging. That said, I am optimistic as the PET scan showed no distant metastis and I know from reading that this form of cancer is treatable.

  5. #5
    Moderator Top User IndyLou's Avatar
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    CT and PET scans are not reliable diagnostic tests for cancer, so I would try to be patient until your biopsy results are shared. Do you have a date for the follow-up appointment?
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  6. #6
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    No, no date. Expect biopsy results this week, so any day now. I certainly hope you are right.

  7. #7
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    I just got off the phone with my doctor and the biopsy was positive for tonsil cancer. He said the ENT would be reaching out to me. He said that treatment would involve chemo and probably radiation. He didn't know about surgery. He didn't provide me with staging, etc. I was pretty well prepared for this at this point. He did say it was localized, so I guess that's good news.

  8. #8
    Moderator Top User IndyLou's Avatar
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    Hi, Joe...I've been thinking about you and wondering how your results went. While I'm sorry to hear that the diagnosis was cancer, I think this will be very treatable, and you have an excellent prognosis ahead of you.

    You likely have something called squamous-cell carcinoma, which is very typical of head & neck cancers. The "localized" status is encouraging, and as you said, the PET scan didn't reveal any significant metastasis.

    At your next visit, you should discuss a specific treatment plan, and then go from there. I would encourage you to have the visit with your spouse or a close friend, and allow them to take notes for you. You may have lots of questions.

    As for the "chemotherapy," the older, platinum chemotherapies may still be used, but you also have many options for targeted treatments (like Erbitux or cetuximab), as well as the newer immunotherapy drugs like Keytruda. Radiation treatment to this part of the body can be somewhat harsh, but discuss the treatment plan with your doctor, to know what to expect.

    If you have any other questions--and I'm sure you will, please don't hesitate to ask them to this forum. Again, I'm sorry to hear about your diagnosis, but the outlook is very hopeful. I'm more than six years away from my diagnosis and treatment, and I live a very normal, healthy, and cancer-free life. There's no reason for you not to have the same.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

 

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