CSN Login
Members Online: 9

Recently Diagnosed Renal Mass...

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

I'm a 30 year old male in Columbia, South Carolina.

In September of 2012 I experienced painless gross hematuria, which was quite a shock. I visited a general practitioner who advised that given my youth and otherwise healthy condition, I likely had a severe urinary tract infection. I began a course of antibiotics, and the hematuria evolved to blood clots and eventually reduced to microscopic by the time I completed the course.

The general practitioner informed me that though my symptom had improved, the urine culture had shown no bacterial growth, suggesting that there was no urinary tract infection. He recommended that I see a urologist.

The urologist appointment was scheduled two weeks later, and when he performed a urinalysis, there was no hematuria. He scheduled a general x-ray which also revealed no abnormalities. He suggested that we could take one of two courses of action:

  1. Order more tests such as a CT scan to see if we could determine the cause of the hematuria.
  2. Take a wait and see approach, to see if the hematuria returns.

I opted for the wait and see approach, and he recommended that if I had a recurrence of hematuria, I should see him immediately.

Everything was going fine until March 19, 2013 when I experienced a few blood clots in my urine, which were minute and would likely not have been noticed if I hadn't been taking a proactive approach in watching my urine since the initial episode.

I called the urologist to schedule an appointment, and he set up a CT scan for March 29, 2013 and an office visit to review the results immediately afterwards.

Per the radiologists report, the CT scan revealed:

  1. 39 mm solid mass lesion in the left kidney suspicious for neoplastic disease including renal cell carcinoma. No retroperitoneal adenopathy.
    "The left kidney demonstrates a large heterogeneously enhancing solid mass lesion in the superior one-half producing mass effect on adjacent calices. This measures 37 mm AP x 39 mm transverse x 33 mm in vertical height and suspicious for a neoplasm. There is no left urolithiasis or hydronephrosis. Other than the mass, no unusual filling defects within the left renal collecting system. No retroperitoneal adenopathy. Normal enhancement of the bilateral renal veins."
  2. Sub-cm low density nodule in the right hepatic lobe, most likely a cyst.
    "Liver and spleen are normal size and demonstrate normal enhancement other than a small sub-cm low density nodule in the right hepatic lobe inferior and medial demonstrating no confident enhancement suggesting a small cyst."

CT Scan

The urologist is a 64 year old traditionalist who has recommended an open radical nephrectomy. He suggested that I discuss the situation with my family and meet with him on April 3, 2013. He stated that there are no other tests to be performed at this time, it's just important to get the kidney removed as soon as possible.

I am considering seeking other medical opinions or options.

Please keep me in your thoughts and prayers.

I have been researching and reading non-stop since this discovery, and have read the kidneycancer.org free book, among many other forums and clinical studies. I'm particular interested in potential recurrence with partial nephrectomy, and the laparascopic vs. open debate.

Any information or help that you can provide, if you've been through this would be helpful. 

What questions should I ask my doctor tomorrow?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

How interesting - in the Uk we'd probably talk of 'flogging a dead horse' - are there a lot of goats in Denmark?!

todd121
Posts: 587
Joined: Dec 2012

Had. Have. Had. Have. It's something I struggled with when I first saw my oncologist after the surgery that is following me and declared me NED. I don't like that term "NED". No evidence. It means as far as they can tell at this moment, you don't have it. It doesn't mean you don't have it anymore.

Unfortunately, until they find a way to test for it (no way now), we all have to act as if we have at least the possiblity of it coming back, because it can survive for years in the body. The good news is Stage 1, Grade 2, is about as good as it gets and the recurrence rates are less than 10%. You don't get a better prognosis with RCC. That's cause for a celebration.

It will have to be followed and considered for the rest of our lives. The highest risk for recurrence is in the first 2 years, but this type of cancer can come back many years later, and the probably doesn't go to 0 even after 10 or 20 years.

Maybe HAD a tumor and don't have it anymore. And that's great. Reducing tumor load is good. It means the body doesn't need to fight that battle, at least.

Because I'm Stage 3, and my recurrence rate is about 40-50%, I decided to take part in one of the drug trials. I'm in the Everest drug trial, which is trying to see if Everolimus might eliminate or delay RCC coming back.

I wish they could come up with a test that would show we are cured or not. That would be terrific.

Todd

 

todd121
Posts: 587
Joined: Dec 2012

Had. Have. Had. Have. It's something I struggled with when I first saw my oncologist after the surgery that is following me and declared me NED. I don't like that term "NED". No evidence. It means as far as they can tell at this moment, you don't have it. It doesn't mean you don't have it anymore.

Unfortunately, until they find a way to test for it (no way now), we all have to act as if we have at least the possiblity of it coming back, because it can survive for years in the body. The good news is Stage 1, Grade 2, is about as good as it gets and the recurrence rates are less than 10%. You don't get a better prognosis with RCC. That's cause for a celebration.

It will have to be followed and considered for the rest of our lives. The highest risk for recurrence is in the first 2 years, but this type of cancer can come back many years later, and the probably doesn't go to 0 even after 10 or 20 years.

Maybe HAD a tumor and don't have it anymore. And that's great. Reducing tumor load is good. It means the body doesn't need to fight that battle, at least.

Because I'm Stage 3, and my recurrence rate is about 40-50%, I decided to take part in one of the drug trials. I'm in the Everest drug trial, which is trying to see if Everolimus might eliminate or delay RCC coming back.

I wish they could come up with a test that would show we are cured or not. That would be terrific.

Todd

 

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Very glad to hear you are doing well in recovery and the prognosis is positive. One suggestion. Because I think you'll want to have it and refer to it over time, get a copy of your pathology report and scans, etc. Ask for copies or have them electronically scanned to you. Both work. Having them on hand makes asking the right questions so much easier.

Again congratulations.

kkorvette's picture
kkorvette
Posts: 1
Joined: Apr 2013

You Story is very much like mine, except that I had been ignoring a right sided pain for many years and thought if it hadn't killed me yet it wasn't going to. In Sept of 2011 I also had Hematuria while at work in a Hospital and was directed for imediat Ct which found a 12 cm tumor on my right Kidney. Renal Cancer is often found by accident or not at all until it is quite large.

Yes you should see a Urologist who specializes in Oncology. I did and had the surgery done after he had confirmed that he could have a vascular surgeon there as well. He elected to do open surgery just for that reason. He needed to make sure there was no vascular involvement. Having the extra expert there was vital.

If you can hook up with a Cancer Center in your area it would be good for you as well.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network