Lack of oncology & Nephrology involvement and all seem to get resolved by urologist in a 30 to 60 da

GeorjeanParrish
GeorjeanParrish Member Posts: 26
in Kidney Cancer #1
I see a pattern in most of these stories.

1. CT only identifying a MASS in the kidney
2. Not a lot of mention of Ultrasound identifying kidney mass.
3. NO discussion of kidney creatinine levels
4. NO urine cytology results
5. Referral to Cancer centers or 2nd opinions from oncology.
6. No inclusion of Nephrology in decision making.
7. Speedy diagnisis and recommended removal.
8. Majority seem to be Left Kidney.
9. No mentions of any biopsy prior to removal.

Questions:
Has anyone ever requested their medical records?
Does it state Kidney cancer or renal mass?

Comments

  • BG
    BG Member Posts: 85 Member
    #2
    medical records

    1. CT only identifying a MASS in the kidney:
    2. Not a lot of mention of Ultrasound identifying kidney mass.
    my mass was identified by ultrasound incidentally by looking at liver for high liver enzymes. Lucky my tumor was in my right kidney (same side as liver), since it would still be in me if it was on the left side since I had NO symptoms

    3. NO discussion of kidney creatinine levels
    I am following my CRP levels as this is tied to recurrence

    4. NO urine cytology results
    The urologist takes urine samples each visit

    5. Referral to Cancer centers or 2nd opinions from oncology.
    I feel this is being proactive regardless of tumor stage

    6. No inclusion of Nephrology in decision making.
    not for me as my surgery was a partial and I still have regualr kidney function

    7. Speedy diagnisis and recommended removal.
    yes

    8. Majority seem to be Left Kidney.
    mine was on right side luckily, see above

    9. No mentions of any biopsy prior to removal.
    Biopsy usually not carried out as tumor masses are 85% of the time not benign.

    Has anyone ever requested their medical records?
    yes, I get copies of all my records

    Does it state Kidney cancer or renal mass?

    yes, the pathology report indicates renal cell carcinoma, Chromophobe Grade II

    The pathology report will indicate if it is cancer. Keep your records. Can you provide the group with your specifics? There are many individuals on this board that can help!

    BG
  • candoredo
    candoredo Member Posts: 44
    #3
    my information




    1. CT only identifying a MASS in the kidney
    My tumors were located by MRI scan for lungs they just happened to scan that low

    2. Not a lot of mention of Ultrasound identifying kidney mass.
    No ultra sound needed as the tumors showed up very well,
    3. NO discussion of kidney creatinine levels
    my creatine levels were all normal, no blood in urine, no sign of anything wrong.

    4. NO urine cytology results
    had no signs of any problems
    5. Referral to Cancer centers or 2nd opinions from oncology.
    I was refered to a urologist and was informed I needed surgery
    6. No inclusion of Nephrology in decision making.
    I was informed of all possibel complications from partial nephrectomy or complete nephrectomy.
    7. Speedy diagnisis and recommended removal.
    my tumor was found in september and removed in December.
    8. Majority seem to be Left Kidney.
    Mine was in the left kidney
    9. No mentions of any biopsy prior to removal.
    I had a biopsy in October which proved to be clear cell Renal Cell Carcinoma


    Questions:
    Has anyone ever requested their medical records? I have all my test results from the MRI through the surgery records.
    Does it state Kidney cancer or renal mass? They state both Renal mass to RCC the pathology reports go a bit more into detail.

    I had one tumor treated with cryoablation, waited for 6 months and the other one showed up and we did it by open surgery. I had the second one done in June of this year.
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    #4
    my version

    1. CT only identifying a MASS in the kidney
    - yes, CT WITH contrast was ordered to check my colon (which was clear)- a CT WITHOUT contrast missed the tumor 2 1/2 years earlier
    2. Not a lot of mention of Ultrasound identifying kidney mass.
    - like others, no ultrasound, tumor clearly identified on the CT
    3. NO discussion of kidney creatinine levels
    - my creatinine levels were above average, better than normal
    4. NO urine cytology results
    - correct
    5. Referral to Cancer centers or 2nd opinions from oncology.
    - only following my surgery, to oversee recurrence/prevention (my cancer was grade 3)
    6. No inclusion of Nephrology in decision making.
    - I consulted informally with a friend who is a nephrologist, he agreed I didn't need to see one unless I lose function later
    7. Speedy diagnisis and recommended removal.
    - CT in late April to surgery July 6
    8. Majority seem to be Left Kidney.
    - yes!
    9. No mentions of any biopsy prior to removal.
    - I had a CT guided needle bioposy one month before surgery. My doctor thought that because of my age, the size and shape of tumor and my lack of any other symptoms that I might beat the odds and have an oncocytoma (benign tumor). The biopsy confirmed cancer so off we went to surgery. At that point, I couldn't get there fast enough! :)

    I have all my records - the doctor gives me copies of his dictation and all the pathology reports. I keep them in a binder with other info I've gathered. The post-surgery pathology is the most complete and most definitely states Clear Cell Renal Carcinoma.

    Questions:
    Has anyone ever requested their medical records?
    Does it state Kidney cancer or renal mass?
  • Katielynn
    Katielynn Member Posts: 61
    #5
    Onc. Involvement...
    1. CT only identifying a MASS in the kidney
    I had 2 CT scans with contrast both within 4 mo. of my diagnosis. Both were called cyst on kidney. No mention of "mass". Was having an ultrasound done for abdominal pain on right side. Tech found something suspicious on RIGHT kidney, had a CT done that same day. Radiologist (at a center, not the hospital where 2 previous CTs were done) found a mass, on my LEFT kidney

    2. Not a lot of mention of Ultrasound identifying kidney mass.

    3. NO discussion of kidney creatinine levels

    4. NO urine cytology results
    My urine cytology normal. I had positively noooooo symptoms

    5. Referral to Cancer centers or 2nd opinions from oncology.
    No after the CT came back pos. for a mass, I had an MRI with contrast confirming my tumor, that was enough for me. Something had to be done, and soon.

    6. No inclusion of Nephrology in decision making.
    My urologist after seeing me for my 2 wk.post-op checkup, said "see you in a year!!!" Thank God my family doctor is looking after me. He's done a urinalysis and bloodwork. I have a lowered GFR 47, so he's referred me to a nephrologist, and to a urologist ( I'm seeing a new urologist, didn't like mine at allll)

    7. Speedy diagnisis and recommended removal.
    Mine wasn't all that speedy, it seemed they couldn't figure if it was a mass or cyst, it was very un-nerving

    8. Majority seem to be Left Kidney.
    Mine was left

    9. No mentions of any biopsy prior to removal.
    No after the MRI my urologist was very certain it was a mass
  • ams123
    ams123 Member Posts: 71
    #6
    My situation
    1. CT only identifying a MASS in the kidney

    Yes, my CT identified a mass in my kidney, with probability of malignancy.

    2. Not a lot of mention of Ultrasound identifying kidney mass.

    An ultrasound is what initially found my tumor, after the ultrasound I got the CT scan.

    3. NO discussion of kidney creatinine levels

    My creatinine levels were high which is why my doctor sent me for the ultrasound.

    4. NO urine cytology results

    I had urine tests because of the high creatinine.

    5. Referral to Cancer centers or 2nd opinions from oncology.

    I was referred to a urologist, I chose not to get a 2nd opinion because I felt my surgeon was very experienced. My urologist says I don't need an oncologist, my primary care doctor says I do. I have an appointment with an oncologist at a major teaching hospital at the end of the month.

    6. No inclusion of Nephrology in decision making.

    My care included visits with a nephrologist due to my elevated creatinine. Nephrologists deal with kidney disease, not really kidney cancer.

    7. Speedy diagnisis and recommended removal.

    Yes, from the first ultrasound to surgery was 8 weeks.

    8. Majority seem to be Left Kidney.

    My tumor was in my left kidney.

    9. No mentions of any biopsy prior to removal.

    I asked about a biopsy, the urologist said they wouldn't do it as 90% of these masses are malignant, and there would be a danger of cancer cells getting out of the kidney and into my body.

    Questions:
    Has anyone ever requested their medical records?

    I have all of my testing and pathology records. I do not request office visit records, and I did not request my surgery records, but I am thinking of doing that.

    Does it state Kidney cancer or renal mass?

    My pathology report says renal cell cancer.

    Linda
  • garym
    garym Member Posts: 1,647
    #7
    ams123 said:

    My situation
    1. CT only identifying a MASS in the kidney

    Yes, my CT identified a mass in my kidney, with probability of malignancy.

    2. Not a lot of mention of Ultrasound identifying kidney mass.

    An ultrasound is what initially found my tumor, after the ultrasound I got the CT scan.

    3. NO discussion of kidney creatinine levels

    My creatinine levels were high which is why my doctor sent me for the ultrasound.

    4. NO urine cytology results

    I had urine tests because of the high creatinine.

    5. Referral to Cancer centers or 2nd opinions from oncology.

    I was referred to a urologist, I chose not to get a 2nd opinion because I felt my surgeon was very experienced. My urologist says I don't need an oncologist, my primary care doctor says I do. I have an appointment with an oncologist at a major teaching hospital at the end of the month.

    6. No inclusion of Nephrology in decision making.

    My care included visits with a nephrologist due to my elevated creatinine. Nephrologists deal with kidney disease, not really kidney cancer.

    7. Speedy diagnisis and recommended removal.

    Yes, from the first ultrasound to surgery was 8 weeks.

    8. Majority seem to be Left Kidney.

    My tumor was in my left kidney.

    9. No mentions of any biopsy prior to removal.

    I asked about a biopsy, the urologist said they wouldn't do it as 90% of these masses are malignant, and there would be a danger of cancer cells getting out of the kidney and into my body.

    Questions:
    Has anyone ever requested their medical records?

    I have all of my testing and pathology records. I do not request office visit records, and I did not request my surgery records, but I am thinking of doing that.

    Does it state Kidney cancer or renal mass?

    My pathology report says renal cell cancer.

    Linda

    My story
    1. CT only identifying a MASS in the kidney

    Yes, CT in the ER following a motorcycle accident found a 5.0 cm mass with high probability of RCC

    2. Not a lot of mention of Ultrasound identifying kidney mass

    No ultrasound or MRI but they did do a bone scan (negative) for suspicious areas on my spine

    3. NO discussion of kidney creatine levels

    No problems detected here even though I had recently been treated for 2 (unrelated) bladder infections

    4. NO urine cytology results

    None reported

    5. Referral to Cancer centers or 2nd opinions from oncology

    Didn't want one, I knew 7 non-survivors of this disease, including my father in-law, prior to my diagnosis so I was pretty well informed as far as surgery being the most effective treatment. I just wanted it out ASAP!

    6. No inclusion of Nephrology in decision making

    No, see above

    7. Speedy diagnisis and recommended removal

    I had 6 broken ribs, a fractured scapula and a punctured lung on my left side from the accident and still had the surgery 22 days after it was found. Five days after the kidney was removed I had a second surgery to repair some of the injuries from the accident, I wouldn't let them do it first because it would delay the nephrectomy, like I said, I wanted it out.

    8. Majority seem to be Left Kidney

    Left side along with everything else of course

    9. No mentions of any biopsy prior to removal

    Biopsy was not recommended because of the possibility of "seeding" to other parts of the body, besides they were pretty certain it was RCC

    I have most of my records

    Mine was described as Clear Cell Renal Cell Carcinoma

    And yes, I'm still riding my motorcycle

    Gary

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