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Thread: Esophageal Cancer Confimed

  1. #1

    Angry Waiting 4-6 weeks for biopsy results?!

    Hi, I'm after advice about my mother. On Wednesday she had an upper endoscopy and biopsies were taken. Before the procedure we were told that results usually take 4-6 weeks unless they suspect something else in which case its a "different kettle of fish" as the nurse put it. When we left we got a copy of the report which said suspected cancer. Until this point nobody had mentioned cancer and it was a bit of a shock, but I'm now worried that we have to wait up to 6 weeks for results?

    My mother is nearly 61 and has had trouble eating since November due to a separate medical condition, and has lost a lot of weight. But recently she has had pain in her chest area/oesophagus and is now scared of eating solid food at all as she feels as though she can't breathe and often brings it back up.

    As I said she is nearly 61 and I am worried about her health as it is. She also has a persistent cough which I believe could be related to esophageal cancer. She is on resource drinks from the doctor which she can manage to get down but can she really survive like this for another 4-6 weeks while we wait for results?

    I've done my research on esophageal cancer but there is so much to take in. Any advice from somebody who has been through this before would be helpful.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to welcome you here under such circumstances. If you can, you might try calling back and asking for clarification of just what it was they were trying to tell you. If cancer is suspected, I would consider one week to be a more appropriate turnaround time. Time would appear to be of the essence, especially in light of her co-morbidities.
    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
    that sounds like a long time to me.... I too would call them back and ask about results in a week.

    I will say this... no news is good news in general terms. Some tests to take a few weeks to come back. Its when they are calling you back in 24 hours and wanting you to come in for more tests or consult with you that i always have found to be bad.

    good luck with your mom.
    I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing.

    Only I will remain.

  4. #4
    Thank you both for your reply.
    I took her to the doctor Monday morning to see if any results were back and there was nothing. Not heard from them since, which I guess as you say no news is good news? I will call tomorrow to see if the doctor has the results back yet. Fingers crossed!

  5. #5
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    I don't know where you are located, therefore turnaround times vary substantially.
    It may be worthwhile telling which country you are located.

    If it is the US for instance them I can't comment as others here will be able to give specific timetables.

    If it is in the UK, then I can give you the best way forward as it can be confusing. Yet there are clear guidelines.from what you say, I agree with all the others to push the case.
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  6. #6
    Senior User
    Join Date
    May 2014
    In 2007 I waited 1 month for the pathology report and they still got it wrong. They said Marginal Zone Lymphoma, but when it relapsed 6 years later they compared old slides with the new slides and said it was Follicular Lymphoma all along. Some biopsies can be difficult I guess.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  7. #7
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Before the procedure we were told that results usually take 4-6 weeks unless they suspect something else in which case its a "different kettle of fish" as the nurse put it.
    Hi there daughter and welcome, though I am sorry you have reason to be here. It seems to me that, since the report said suspected cancer, then the quote above would apply. Be the squeaky wheel for your Mom. If, at first, you don't succeed then do try, try again. Talk to the nurse, I would doubt the doc will have much to say until the pathology is back. But, if the nurse said a suspicious initial impression speeds things up and you have a suspicious initial impression then feel free to press them for the answers. It is always good to remember that the care team works for us, not the other way around.

    Good luck to your Mom in all aspects of this...and good health to you both,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  8. #8
    My mum went back to the doctors yesterday again and still no results. Her upper endoscopy was 3 weeks ago now! I know no news can be good news but in the mean time my mother is suffering.
    She is still struggling to eat solid food and even things like milkshake gives her a bit of trouble now. She has pain/ discomfort in her stomach and oesophagus pretty much all the time now and us taking 3 different tablets for gastritis.

    Baz10 I'm in the UK if you can help?

  9. #9
    Ok, so I know I only posted this morning but I have an update. My mum received a phone call from the hospital today and was asked to go straight in, she was told she has cancer. The reason we have had to wait 3 weeks for the results it because the doctor that took the biopsies during the upper endoscopy didn't rush through the results as he didn't think it was cancer because the lumps were only slightly raised.

    I know 4 biopsies were taken, I don't know how many are cancerous?

    So if the doctor didn't think it was cancer because the lumps were only slightly raised, can this potentially mean we have caught it early? Or could it mean that it's further through the wall?

    Unfortunately I wasn't will her at her appointment today as she got the call to go in while I was at work and didn't tell me!!! So now I'm relying on her to relay the information to me.

    She has an appointment next week for a CT scan, and she is also going to be seeing a dietician soon (she is otherwise healthy other than the weight loss from not being able to eat solid foods, but obviously can't afford to loose any more weight). She is also waiting to have a second upper endoscopy now with a camera that can see all the way around rather than the one that can only see straight down, this will also be able to tell us a bit more hopefully.

  10. #10
    I am so sorry its come back cancer. I dont know if it has been caught early or not.... the doctor will have to tell you that. The CT scan will be able to tell you more about what is going on in your moms body.

    Hang in there hun.....
    I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing.

    Only I will remain.


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