Cancer in multiple places

jstavene Member Posts: 2 Member
edited March 2022 in Kidney Cancer #1

I always had Renal issues I have had kidney stones about 4 times a year for 25 years I am turning 45 in Mar. I am on allipurinol.

I am physical, Was a military contractor (specialist in heavy armoured machines) and worked rail road, Networ Admin, was Head of Robotic Maintenance in Factory who builds ATV's, worked in 2 nonprofits for many years then went back to Factory Welder (my night job, I own a small business also) My current job requirements are lift 40 lbs and up to push 100lbs (I often weld a ATV (4 wheeler frame) and hang then on hooks 9 feet up.. sometimes alone mostly with other hoist machines but sometimes just by grunt and heft ..I am currently off work bout 1 month and a week took 3 weeks to get the short term dissability setup and keep getting it renewed like every 9 days

I originally had hematuria and thought it was just kidney stones a colicy ureter (happened once years ago) but went to a knew doc who insisted on a ct, which showed things, and was referred to a Urologist who helped clarify, a tumor in the bladder, a tumor we thought in the center of the right kidney , the urologist then decided what we could do, was 2 procedures, a turbt, then biopsy right kidney and remove stones from left to setup the left kidney for success. The urologist asked I get a chest ct, I did and we found 2 small nodules on my right lower lung. we hope are from infection. A suspicion was that I had a bladder tumor and it spread to kidney.

During the first procedure turbt went well, tumor was non metastized and low grade. But the ureters were too small for tools and scope so Stents and spacer went in.

Next procedure maybe 9 days later Stones removed from left kidney well, and attempt to biopsy right, but appears the tumor is also on the outside. (this has me freaked, with the right lower lung havinf those nodules and bone islands? found in chest ct) (I did not understand results of the biopsy well enough to explain) I was told we needed to decide about chemo, if results were low enough we could got direct to nephrectomy I wanted this to avoid more time off work who at 6 months may fire me. (results were low enough so no chemo yet)

Third procedure was cystoscopy to remove the stents, about another 9 days later I think

On the 10th I will have a nephrouterectomy, removing right kidney and ureter.

hoping for a 2 day (overnight hospital stay)

I had friends who I met during this had been opened, cancer was seen, so they closed them up and told 3/7 months (since I started this 4 friends have passed from groups I was in)

Last year on feb 15th I was in ER for colorectal issue which was removed then put on a survielannce program every 3 years.

I have some questions, anyone have a opinion about PETscans? CTscans?

I am suspecting I may end up with a oncologist after this if kidney is removed and procedure goes fine? as a followup?

Will a CT once a year be enough to watch the lung bits? (I suspect that will be a surviellance thing too? )

at the start of this my gfr was 81, now it was 92 yesturday (stones removed, liquid low sodium diet, have not been on red meat in some time, 4 oz lean meat a day about, fish etc have been on a diet for years, but now sodium and such,, even watching sugar for pre-diabetic, I am within range, lost some wieght 5'8" 185lbs about also watching phosphorus and postassium , carbohydrates staying away from caffiene and hydrated (anything else I should watch?

Anticipating when I get out gfr will go in half? 40-46, but work back to .75 percent so 60 ish?

Nephorureterectomy will be robotic so hoping things go good

only meds I am on are crestor cholesterol and allipurinol and citric something to help break stones.

No ibuprofin, painkillers not even taking aspirin .

Any suggestions? should I insist on a petscan? Am I naive with the idea after this I will be cancer free? whats the smartest things I should do?



  • tgpath1
    tgpath1 Member Posts: 97 Member

    I am so sorry that you are going through this. It is definitely scary! They found nodules in my lungs too but I'm told that nodules exist in everyone and they will only be concerning if they grow. My kidney was stage 3 but with clear margins so removing my kidney removed the cancer. My experience is that once they remove your kidney, regular CT scans are part of your monitoring. I had a chest CT every three months for the first year and now every six months until they change to annually. Since cancer typically metastasizes to lungs first, they watch lungs closely for a long time. I am not sure how easy it is to get a PET scan...without confirmed cancer in more than one spot, my guess is that the insurance won't allow it. I was told it's about $150K to run it so insurance is pretty strict about ordering it.

    When I was diagnosed, they had me meet with an oncologist but it was purely advisory. After removal of my kidney, all follow ups are with the urologist. Unless you have cancer that requires treatment of some sort, I do not believe that an oncologist will see you on a regular basis. Mine specifically said he would only see me again if cancer was found after the far, so good, I haven't had to see him.

    I can't speak to the bladder but kidney cancer is typically removed when they remove the kidney (not sure about when it's also on the outside of the kidney though). They monitor for metastases and recurrence but there is not a tremendous amount of risk once they remove it. I'm sorry to hear about your friends but I am curious, were they kidney cancer or something else? I have also heard of people being opened up and there being too much cancer to do much...but when the cancer is "inside" the kidney, that's not a huge concern because it's contained.

    GFR will vary from person to person...mine is about 65 one year post op (never went lower than 60 even right after surgery) and the urologist and nephrologist are both very happy with that. They will just monitor it as time goes on but the nephrologist indicated that it would be 30 years or more before I would have to worry about kidney issues (renal failure was a major concern for me but the nephrologist completely put me at ease on that). Plenty of water and no Ibuprofen was really the only thing she said I would have to monitor.

    Good luck to you and I'm praying for you that this is contained and removed with the kidney. Please keep us posted on how it goes!!

  • AliceB1950
    AliceB1950 Member Posts: 217 Member

    If the cancer is on the outside of the kidney, it means it hasn't infiltrated, which is a GOOD thing. Mine was 7 cm and perched on top of my kidney.

    I also have lung nodules. As my oncologist explained, people don't know what all they've got inside until they start getting scans. I had breast cancer the same time as my kidney cancer, which is why I have an oncologist. As long as the nodules just sit there and don't grow, they're nothing to worry about.

  • eug91
    eug91 Member Posts: 439 Member

    Hi jstavene-

    Sorry you had to join us, but this is a great group here. We know what you're going through, so we're here for you.

    In addition to the great advice above-

    RE: PETScan vs CTScan - a lot of factors as to why you'd want a specific type of scan (PET, CT, MRI, X-Ray, ultrasound) over the other (how often do you need the scan, can your kidney handle the contrast, what will your insurance pay for, etc). If you click on my profile, you can see my doctor likes to alternate scans, the CT/MRI with contrast are more sensitive for the areas he wants to check more closely, the x-ray won't pick up the smaller things as well but he's not as worried about my lungs. But that's just my doctor - you should check with your doctor about what scans they want for you.

    RE: GFR. It really depends. In my case, my GFR is now higher than it was before my neph. Which is typical - the remaining healthy kidney will often grow stronger and make up for the missing one, plus in my body my cancerous kidney was probably more of a passenger and not a contributor to my GFR.

    And lastly, no, it is NOT naive to hope that this will take of the cancer. Modern treatments have gotten really good. Stay positive. Just stay on top of your follow-up visits.

    Good luck with your neph. We're with you - you've got this!

  • jstavene
    jstavene Member Posts: 2 Member

    I went in on thurs 6 am in a snow storm (snow squall) and was out of surg maybe 1pm, I was able to abide food and walk at 7 am Fri, discharged bout 11 on friday. (Nurses were great, and a orderly, and the 2 doctors) I just got some info on the kidney that was removed and the ureter.

    Any thoughts or opinions would be appreciated

    ComponentYour ValueStandard RangeFlagClinical HistoryKidney mass [N28.89].FINAL DIAGNOSISKidney, right, radical nephroureterectomy:

    Clear-cell renal cell carcinoma, grade 3 of 4 grades, 2.2 cm in greatest dimension (see comment and synoptic).

    Tumor extends into renal sinus adipose tissue.

    Fragment of bladder wall, largely denuded with foreign body giant cell reaction.

    Segment of unremarkable ureter.

    The surgical margins appear uninvolved.

    COMMENTImmunohistochemical stains with appropriate controls are performed. The tumor cells are positive for CD10 and PAX8 and are negative for CK7 and Pancytokeratin. The immunohistochemical profile supports the above diagnosis.


    This case is reviewed at the intradepartmental quality assurance conference.


    Specimen is received in formalin, labeled with the patient's name, medical record number and "right kidney and right ureter" specimen consists of a right kidney weighing 562 g (with perirenal fat tissue) the kidney measures, with perirenal fat tissue 18.5 cm lower pole to upper pole; 8.5 cm medial to lateral (with perirenal fat tissue and 4.5 cm anterior to posterior (with perirenal fat tissue. The specimen consists of a nephro ureterectomy and include a bladder cuff the ureter (and bladder cuff measures 17 cm in length from bladder cuff to ureteropelvic junction.. The specimen shows anteriorly a white and glistening fascia resembling the Gerota's fascia (inked black). The renal vein and renal artery margins are identified and the shaving of are taking (renal vein is inked blue and renal artery is inked red) also a shaving from the bladder cuff is taken (green). The external surface of the ureter looks unremarkable. The external surface of the ureter is ink violet. The ureter is open from bladder cuff to UPJ. Specimen is bisected into pieces anterior and posterior from lateral to medial and in the renal pelvis in the interpolar area (midportion of the pelvis) there is a 2.2 x 2 x 1.8 cm well encapsulated mass located near a central papilla. The cut surface of the mass shows a rubbery lobulated tan to brown with some yellow rounded central areas. No cystic lesions are identified on the lesion. The lesion is hemorrhagic. No other lesion is noted in the kidney. The normal parenchyma shows in both poles and midportion a cortex measuring up to 0.6 cm in maximum thickness there is tan to brown. The pyramids of the medulla measures 1.2 cm in maximum thickness and looks grossly unremarkable.. The ureter is opened longitudinally showing that the mucosa is free of tumor as well as the ureter pelvic junction and the pelvis.. The rest of the collecting system looks grossly normal. No other masses are identified in the pelvis and ureter. The closest margin to this lesion is the anterior perirenal fat tissue and Gerota's fascia (inked black). Representative sections are submitted as follows:

    A1 renal vein and artery margins (vein is blue artery is red)

    A2 shaving of bladder cuff

    A3 relationship between Gerota's fascia/perirenal fat tissue margin and the lesion (closest margin)

    A4 mass and its relationship to the adjacent renal pelvis

    A 5 mass and its relationship to the adjacent medulla and adjacent renal sinus.

    A6 mass itself and its surrounding capsule.

    A7 normal upper pole parenchyma including cortex medulla and collecting system.

    A8 union between bladder cuff and ureter sagittal section

    A9 transverse section of ureter closer to bladder cuff


    MICROSCOPIC DESCRIPTIONMicroscopic examination substantiates the diagnosis. Relevant stains and controls are reviewed and are satisfactory.



    8th Edition - Protocol posted: 2/26/2020


    Procedure: Radical nephrectomy

    Specimen Laterality: Right


    Tumor Site: Middle

    Histologic Type: Clear cell renal cell carcinoma

    Histologic Grade: G3: Nucleoli conspicuous and eosinophilic at 100x magnification

    Tumor Size: Greatest Dimension (Centimeters): 2.2 cm

    Tumor Focality: Unifocal

    Tumor Extension: Tumor extension into renal sinus

    Sarcomatoid Features: Not identified

    Rhabdoid Features: Not identified

    Tumor Necrosis: Not identified

    Lymphovascular Invasion: Not identified


    Margins: Uninvolved by invasive carcinoma


    Regional Lymph Nodes: No lymph nodes submitted or found


    Primary Tumor (pT): pT3a

    Regional Lymph Nodes (pN): pNX


    Pathologic Findings in Nonneoplastic Kidney: None identified