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Thread: How long does a diagnosis (or ruling out) for cancer usually take?

  1. #11
    Newbie New User
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    Quote Originally Posted by johnr View Post
    Hi again, at this stage it could be anything or nothing and whilst we can second guess, that's all it would be a guess, the scan will give them a clearer picture and the are a number of non cancerous reasons why things show up, along with mediastinal types of lymphoma should it prove to be lymphoma. As hard as it is it is a waiting game which is the hardest part and that is closely followed by the mental noise created in your head.

    Fingers crossed you fears are not realised.

    John
    Her rapid biopsy came back this weeks and is confirming Hodgkins lymphoma which is more likely than not stage 4. They're confirming it all with PET scan on Monday. My wife's ENT is referring us back the hematologist. I'm not sure if they tell everyone this but her ENT says this is totally beatable and expects her to be able to live a normal life and wished her the best.

    Here we go!

  2. #12
    Moderator Senior User IndyLou's Avatar
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    Jan 2014
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    I'm sorry to hear of your wife's diagnosis, but I concur with what your doctor said about it being very treatable. I know of several people who had symptoms just as you described, were also diagnosed with lymphomas, and were successfully treated and are living normal lives. Please continue to post as your wife progresses through her treatment journey, if you like. We do have lots of knowledgeable folks within the forum that would be happy to answer any questions for you.

    best wishes.
    Age 52 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

  3. #13
    Moderator Top User
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    Hi again and sorry to read she now has a diagnosis, I did wonder if it may be HL, treatment is standard with ABVD and most get a good response at the mid point scan and over 90% now make full remission following their completion of treatment. Each cycle is 2 treatments given at 14 day intervals, the are a few who still post who have had HL so they may reply at some point and to help it may be worth adding HL confirmed to the title by editing it, or one of us can do that for you if you wish, just let us know.

    Here to help as and when you need it.
    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #14
    Experienced User
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    Oct 2013
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    I was treated for HL in 2017 (although I also had FNHL as well so had a different chemo) but two years later I am probably in the best shape I have been in since my 20's i tmay be a bit of a crap time to go through it, but there is every chance this will soon be a distant memory.
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  5. #15
    I had advanced HL (nodules all over my lungs) and I am now over 4 years in remission. In less than a year, I’ll be considered “cured”. Most people no matter the stage end up cured. You’ll hear a lot about how it is the “good cancer”. The chemo sucks, but it is saving her life. The best advice I can give is never be afraid to ask questions. Ask for drugs if she needs them. Make sure she takes the medications they give her for the side effects. The biggest issue I had was mouth and stomach pain. Sucking on ice during chemo seemed to help the mouth pain. Nothing helped the stomach pain until I was given a pain killer. Everyone is different but the more you know what can happen, the better prepared you can be. And, finally, and I think most importantly, make sure she attends group and/or 1-on-1 counseling IF she needs it. It helped me tremendously to meet other people that were going through the same.

    This will be just as hard on you as it is on her. Don’t forget to take care of yourself as well.

  6. #16
    Super Moderator Top User po18guy's Avatar
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    Here is my curmudgeonly, no-longer-fear-cancer opinion. First, modern doctors seem less hesitant to express concern or even alarm to patients. This was not so just a few decades ago. They reserved judgment until the seriousness of a situation was confirmed.

    Secondly, modern doctors (over)react out of liability/malpractice worries. Thus, relatively minor occurrences might lead to all sorts of testing. Each test raises the patient's stress level.

    Thirdly, I might be wrong here, but it seems that very little is taught regarding the immune system these days. Lymph nodes must react and enlarge or we are goners much faster than any cancer can take us.

    Paul Allen? He had lymphoma, but it did not claim his life. Sepsis - massive infection - took him. If our immune systems did not function on a daily basis; if our lymph nodes did not react and enlarge in response to the millions of pathogens we ingest and inhale daily, we would be in the same shape as Mr. Allen.

    Fourth, the "mis-information age" has caused the availability of medical data and facts that easily lead to incompetent self-diagnosis. So-called "Googleitis" has lead many to believe that they are not long for this world.

    At one point, when it was reasonably certain that my lymphoma had relapsed a second time, not a single tumor was in a location which would allow biopsy. The solution: I had to grow more and larger tumors - more cancer - so that a tumor close enough to the surface could be biopsied.

    At that point, we found out that I actually had three cancers. Although it was not easy, it was doable and it is now four years since I had evidence of cancer. So, if I seem to be rather casual about it, the simple fact is that it no longer scares me.

    Simple advice that is very hard to accomplish: Live life. Enjoy life. Increase your general business so as to intensify the life experience. When the diagnosis arrives (bear in mind that many illness are never identified), either breath a sigh of relief, or adopt an attitude of perseverance (powered by love) to fight through it.
    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.

 

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