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Thread: undiagnozed kidney tumor

  1. #1
    Newbie New User
    Join Date
    Jul 2012

    undiagnozed kidney tumor

    long story short...about 7 months ago my husband started to have a real bad persistant cough...after about 3 months he was diagnozed with sacrodosis as the nodes in his lungs were enlarged...after a CAT scan the doctors found a tumor on his left kidney and after a second CAT scan of his lungs they saw that some of the lyphe nodes were larger and some smaller...which is not what happens when u have sacrodosis...and then told us that the cough was most prob. because of the tumor and when it was removed the cough would also go away...so about 20 days ago they removed the tumor and his left kidney as the tumor was attached to it,,,,after the operation the cough went away and now is back!...he has real bad pain in his stomach and his left leg is sore to the touch...like a inflammation...and he also has a very sore back...hes losing appetite and has lost a lot of weight...just wondering if anyone out there has or had anything similar....we are still waiting for the test results of what kind of tumor it is they said its most liekly RCC...thank you so much

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    New York
    Hi aldiyana and welcome. I don't know what is going on with your husband but do suggest that you contact his doctor to get an assessment. Many things can happen post surgically that can cause issues. If he is in the normal post op recovery, they will tell you that and should also provide strategies for coping with the pain and the cough. If things are not progressing normally they will be able to determine that and take corrective action.

    I hope your husband's biopsy comes back negative for RCC and that he is able to resume his normal activities soon. If it is RCC, we are here to help and support. Good luck with everything.

    Good health,

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

    Age 66
    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 iliax 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.

  3. #3
    Newbie New User
    Join Date
    Jul 2012

    thank you so much for your nice words, they make a whole lot of difference when everything is looking grey...every comment is much appreciated!

    my husband is going on a check up on monday, so we will see if everything hes experiencing is normal...

    the pain in the stomach, leg and back dont worry me that much as i think that it is normal after an operation...nerves get damaged and its normal to be in pain after such a big operation...its the cough thats got me going crazy...just scared that the tumor or cancer what ever it is, spread to the lungs...but he had x-rays and 2 CAT scans on his lungs done...im sure if it spread they would of seen it then???...he never had any symptoms...never had blood in the urin all his blood tests where fine...only this cough and the enlarged lymph nodes in the lungs and yet all of this happend...im so confused because nothing adds up and i cant find nothing similar to his case...

  4. #4
    Regular User
    Join Date
    Oct 2012
    Ask your doctor to do a PetScan if there is anything showing on the CAT scans. A PET Scan will use a dye and show metabolic activity in the cells, this activity will help them in determining the likelihood that anything the CT sees is cancer or not. It will not definitively answer it, but it will greatly help guide them.


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