Recently Diagnosed Renal Mass...

ddantzler
ddantzler Member Posts: 21
edited April 2013 in Kidney Cancer #1

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?

«13

Comments

  • dhs1963
    dhs1963 Member Posts: 513
    #2
    What I recumbend

    Find a different urologist, and find a urological oncologist.  At less than 4 cm, you will most probably be cured with surgery.  However, I see no reason to not have laproscopic.  Also, Partial Nephrectomy is better, as it leaves you with mor ekidney function.

    Find a urologist that is familiar/trained in the latest technology.  An open radial nephrectomy for a small tumor does not make sense to me.

    At columbia, I would talk to people at either Duke Medical Center or Emory in Atlanta.  

  • foxhd
    foxhd Member Posts: 3,181 Member
    #3
    dhs1963 said:

    What I recumbend

    Find a different urologist, and find a urological oncologist.  At less than 4 cm, you will most probably be cured with surgery.  However, I see no reason to not have laproscopic.  Also, Partial Nephrectomy is better, as it leaves you with mor ekidney function.

    Find a urologist that is familiar/trained in the latest technology.  An open radial nephrectomy for a small tumor does not make sense to me.

    At columbia, I would talk to people at either Duke Medical Center or Emory in Atlanta.  

    What dhs recumbends

    er, recommends. Good advice.

  • AprilandChuck
    AprilandChuck Member Posts: 110
    #4
    You are a Hour and Half from Charlotte..

    If you have the means to travel... Mckay Urology/Levine Cancer Institute has at least two pretty awesome Urological Oncologists...I list them both because Levines Urological Oncologist are actually McKays.. but Levine team treats so they are all housed in the same building... even though the main part of McKay Urology is housed in another place fairly close by... We like the team treat system because there are more eyes on the problem... If you can travel call McKay and ask about Doctor Kris Gaston.. Best of luck hugggss

  • dhs1963
    dhs1963 Member Posts: 513
    #5
    AprilandChuck said:

    You are a Hour and Half from Charlotte..

    If you have the means to travel... Mckay Urology/Levine Cancer Institute has at least two pretty awesome Urological Oncologists...I list them both because Levines Urological Oncologist are actually McKays.. but Levine team treats so they are all housed in the same building... even though the main part of McKay Urology is housed in another place fairly close by... We like the team treat system because there are more eyes on the problem... If you can travel call McKay and ask about Doctor Kris Gaston.. Best of luck hugggss

    +1

    I do not know the Carolina's.  AprilandChuck do.  

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #6
    dhs1963 said:

    +1

    I do not know the Carolina's.  AprilandChuck do.  

    Young Doctors

    Most of the Doctors on the cutting edge of Kidney Cancer are either affiliated with large University's or came out of large Universities in the last 10 or 15 years. Most are under 50. The old way of doing things with an open radical was the standard 20 or more years ago. When I had mine almost 11 years ago the new thing was laproscopic. My surgeon is my kids age. In the last few year they started doing partials,   You have a 4 cm tumor which should result in a full recovery after surgery. Find a large Urology practice or University where the Urologist specializes in Kidney Cancer.

    That being said at 30 years old and a tumor under 4 cm you should be fine. The surgery is not fun, but better days lie ahead.

     

     

    Icemantoo

     

    PS: I do not think this was Doogie Howser's specialty (This may be before your time so Google Doogie Howser MD).

  • cran1
    cran1 Member Posts: 139
    #7
    Hang in there D.....

    Hang in there D.....

  • ddantzler
    ddantzler Member Posts: 21
    #8
    AprilandChuck said:

    You are a Hour and Half from Charlotte..

    If you have the means to travel... Mckay Urology/Levine Cancer Institute has at least two pretty awesome Urological Oncologists...I list them both because Levines Urological Oncologist are actually McKays.. but Levine team treats so they are all housed in the same building... even though the main part of McKay Urology is housed in another place fairly close by... We like the team treat system because there are more eyes on the problem... If you can travel call McKay and ask about Doctor Kris Gaston.. Best of luck hugggss

    Thanks for the feedback and

    Thanks for the feedback and the support! I read a little regarding Chuck's situation in your recent post and I will keep your family in my prayers!

  • ddantzler
    ddantzler Member Posts: 21
    #9
    cran1 said:

    Hang in there D.....

    Hang in there D.....

    Thanks for the support!
    This

    Thanks for the support!

    This whole thing comes as a shock. Other than the blood in my urine, I feel great. Because of that, it alll feels surreal to me at the moment.

    I have an appetite, no fever, etc. The only thing that might be a red flag for me medically would be that since the first experience with blood in my urine, I have been plagued with minor infections and illness (bad cold that required antibiotics, strep throat, infected cuticle that required lancing and antibiotics). This coming from a guy who hasn't been to a doctor in 3 or 4 years prior to the hematuria incident. Looking back, perhaps that was because of a weakness in the immune system. Maybe not. Also, at every other doctor's appointment I've had since, I seem to have borderline high blood pressure.

     

     

  • ddantzler
    ddantzler Member Posts: 21
    #10
    dhs1963 said:

    What I recumbend

    Find a different urologist, and find a urological oncologist.  At less than 4 cm, you will most probably be cured with surgery.  However, I see no reason to not have laproscopic.  Also, Partial Nephrectomy is better, as it leaves you with mor ekidney function.

    Find a urologist that is familiar/trained in the latest technology.  An open radial nephrectomy for a small tumor does not make sense to me.

    At columbia, I would talk to people at either Duke Medical Center or Emory in Atlanta.  

    Oops, forgot to mention that

    Oops, forgot to mention that what scares me about the partial nephrectomy is the risk that they don't get the entire tumor, or somehow spread cancerous (assuming it's cancer) cells in the region. I guess I feel like if it's all contained in the kidney, why not just remove it and be done with it. Kidney function is nice, but people donate a kidney here and there and are fine.

    My goal would be the least risky approach, get rid of it and hopefully be cancer free.

    Maybe the doctor (who obviously knows better than me) will be able to convince me to take the partial approach.

  • NanoSecond
    NanoSecond Member Posts: 653
    #11
    ddantzler said:

    Thanks for the support!
    This

    Thanks for the support!

    This whole thing comes as a shock. Other than the blood in my urine, I feel great. Because of that, it alll feels surreal to me at the moment.

    I have an appetite, no fever, etc. The only thing that might be a red flag for me medically would be that since the first experience with blood in my urine, I have been plagued with minor infections and illness (bad cold that required antibiotics, strep throat, infected cuticle that required lancing and antibiotics). This coming from a guy who hasn't been to a doctor in 3 or 4 years prior to the hematuria incident. Looking back, perhaps that was because of a weakness in the immune system. Maybe not. Also, at every other doctor's appointment I've had since, I seem to have borderline high blood pressure.

     

     

    Blood Pressure

    Like you I only had one symptom (finally) show itself: blood in my urine.  However, in hindsight I also had borderline high blood pressure for several years prior.  I was taking a very dose of medication (Benicar - olmesartan) to deal with it.

    But after my full left nephrectomy my blood pressure dropped down to normal. In fact I had to stop taking all BP medication or risk too low BP.

    My tumor (11cm) likely had been growing in me for at least 7-10 years.  It was during the same time period as when I developed that higher blood pressure.

  • ddantzler
    ddantzler Member Posts: 21
    #12
    dhs1963 said:

    What I recumbend

    Find a different urologist, and find a urological oncologist.  At less than 4 cm, you will most probably be cured with surgery.  However, I see no reason to not have laproscopic.  Also, Partial Nephrectomy is better, as it leaves you with mor ekidney function.

    Find a urologist that is familiar/trained in the latest technology.  An open radial nephrectomy for a small tumor does not make sense to me.

    At columbia, I would talk to people at either Duke Medical Center or Emory in Atlanta.  

    Thanks for the

    Thanks for the recumbendations... Wink

    but, seriously thank you.

    Per your advice, I have decided to go the University route. I will be asking my urologist to forward my records to MUSC in Charleston, where I have scheduled an appointment with Dr. Stephen Savage on April 15th.

    EDIT: They called me back and bumped up my appointment to April 8th.

  • ddantzler
    ddantzler Member Posts: 21
    #13
    NanoSecond said:

    Blood Pressure

    Like you I only had one symptom (finally) show itself: blood in my urine.  However, in hindsight I also had borderline high blood pressure for several years prior.  I was taking a very dose of medication (Benicar - olmesartan) to deal with it.

    But after my full left nephrectomy my blood pressure dropped down to normal. In fact I had to stop taking all BP medication or risk too low BP.

    My tumor (11cm) likely had been growing in me for at least 7-10 years.  It was during the same time period as when I developed that higher blood pressure.

    The doctor said I'm lucky to

    The doctor said I'm lucky to have had the blood in my urine, and that most folks don't experience any symptoms until the tumor is much larger. In that regard I feel blessed.

    I must say, that the general practitioner I saw originally due to the blood in the urine is eating his words now. He said:

    "It could be a variety of things: UTI, kidney stones, ruptured blood vessel, kidney or bladder cancer. Since you're not feeling pain, it's not likely kidney stones. Kidney and bladder cancer typically effects men in their 60s. This would be extremely rare. You're not going to be the only guy under 30 with kidney cancer in South Carolina this year, and if you are, you weren't meant long for this world anyway. I would take a wait and see approach, because if it's something serious it will come back."

  • dhs1963
    dhs1963 Member Posts: 513
    #14
    ddantzler said:

    The doctor said I'm lucky to

    The doctor said I'm lucky to have had the blood in my urine, and that most folks don't experience any symptoms until the tumor is much larger. In that regard I feel blessed.

    I must say, that the general practitioner I saw originally due to the blood in the urine is eating his words now. He said:

    "It could be a variety of things: UTI, kidney stones, ruptured blood vessel, kidney or bladder cancer. Since you're not feeling pain, it's not likely kidney stones. Kidney and bladder cancer typically effects men in their 60s. This would be extremely rare. You're not going to be the only guy under 30 with kidney cancer in South Carolina this year, and if you are, you weren't meant long for this world anyway. I would take a wait and see approach, because if it's something serious it will come back."

    Two thoughts

    First, has anyone else in your immediate family had kidney cancer (parents, grandparents, siblings).  If so, there are studies on familial kidney cancer that may be of help.  I mention this because you are young.

    Second, your GP is wrong.  His wrong advice could have killed you.  Kind of like, when my father was diagnosed with kidney cancer, and knowing my grandfather died of it, I asked my internist if I should be screened.  He told me that it is an environmental disease and I should not be at risk.  I am now part of the NIH familial kidney cancer research project.

  • AprilandChuck
    AprilandChuck Member Posts: 110
    #15
    ddantzler said:

    Thanks for the support!
    This

    Thanks for the support!

    This whole thing comes as a shock. Other than the blood in my urine, I feel great. Because of that, it alll feels surreal to me at the moment.

    I have an appetite, no fever, etc. The only thing that might be a red flag for me medically would be that since the first experience with blood in my urine, I have been plagued with minor infections and illness (bad cold that required antibiotics, strep throat, infected cuticle that required lancing and antibiotics). This coming from a guy who hasn't been to a doctor in 3 or 4 years prior to the hematuria incident. Looking back, perhaps that was because of a weakness in the immune system. Maybe not. Also, at every other doctor's appointment I've had since, I seem to have borderline high blood pressure.

     

     

    Club of little or no side effects

    Chuck was healthy.. he got bitten by something 2 years ago and ended up in the emergency room for infection(which they found strange we now think this could have been our first sign that something was wrong..He also punched a goat(long story) and ended up with gangreen in his finger from an infection.. but people even medical people don't assume cancer because you got an infection)... prior to that it had been 10 years since he had an illness that required medical attention.. when he had Blood in his Urine no abnomalities showed up in his blood work...he had.. had some weight loss.. but he works all the time and the summers had been a bugger so we attributed this to his work load in the heat...The doctors told him "you are healthy except for the cancer" which totally wigged him out.. how can you be healthy except for cancer..But they meant that everything else checked out.. and he was good for other treatment because of no underlieing issues...as far as we know he has no family history of Kidney Cancer...he did 3 tranmission jobs the week he peed blood and had some minor back pain he attributed to the lifting...Peeing blood was his first and only sympton of something wrong...the Doctors told him.. the strain on his back aggravted the Kidney and prob caused it to bleed or we may still not know he has Kidney Cancer...and he still feels good except being a little more tired... than he used to be... and some gastro issues we attribute to the HD IL2 treatment he underwent...So we know how you feel...it's rough to be sick and not feel sick... your tumor is still small though.. so your prognosis should be really good....and once you get the nephrectomy you should be on the mend!!! Praying for that outcome good news is always welcome :D

  • ddantzler
    ddantzler Member Posts: 21
    #16
    dhs1963 said:

    Two thoughts

    First, has anyone else in your immediate family had kidney cancer (parents, grandparents, siblings).  If so, there are studies on familial kidney cancer that may be of help.  I mention this because you are young.

    Second, your GP is wrong.  His wrong advice could have killed you.  Kind of like, when my father was diagnosed with kidney cancer, and knowing my grandfather died of it, I asked my internist if I should be screened.  He told me that it is an environmental disease and I should not be at risk.  I am now part of the NIH familial kidney cancer research project.

    To my knowledge, there is no

    To my knowledge, there is no history of familial kidney cancer in my case. 

  • foxhd
    foxhd Member Posts: 3,181 Member
    #17
    AprilandChuck said:

    Club of little or no side effects

    Chuck was healthy.. he got bitten by something 2 years ago and ended up in the emergency room for infection(which they found strange we now think this could have been our first sign that something was wrong..He also punched a goat(long story) and ended up with gangreen in his finger from an infection.. but people even medical people don't assume cancer because you got an infection)... prior to that it had been 10 years since he had an illness that required medical attention.. when he had Blood in his Urine no abnomalities showed up in his blood work...he had.. had some weight loss.. but he works all the time and the summers had been a bugger so we attributed this to his work load in the heat...The doctors told him "you are healthy except for the cancer" which totally wigged him out.. how can you be healthy except for cancer..But they meant that everything else checked out.. and he was good for other treatment because of no underlieing issues...as far as we know he has no family history of Kidney Cancer...he did 3 tranmission jobs the week he peed blood and had some minor back pain he attributed to the lifting...Peeing blood was his first and only sympton of something wrong...the Doctors told him.. the strain on his back aggravted the Kidney and prob caused it to bleed or we may still not know he has Kidney Cancer...and he still feels good except being a little more tired... than he used to be... and some gastro issues we attribute to the HD IL2 treatment he underwent...So we know how you feel...it's rough to be sick and not feel sick... your tumor is still small though.. so your prognosis should be really good....and once you get the nephrectomy you should be on the mend!!! Praying for that outcome good news is always welcome :D

    Punching a goat?

    No story about punching a goat is too long..........

  • ddantzler
    ddantzler Member Posts: 21
    #18
    foxhd said:

    Punching a goat?

    No story about punching a goat is too long..........

    +1

    ^ This...

  • ddantzler
    ddantzler Member Posts: 21
    #19
    foxhd said:

    Punching a goat?

    No story about punching a goat is too long..........

    Then again...

    Who wouldn't want to punch one?

    image

  • foxhd
    foxhd Member Posts: 3,181 Member
    #20
    ddantzler said:

    Then again...

    Who wouldn't want to punch one?

    image

    OMG!

    YOU KNOCKED OUT ALL HIS TEETH!!!!!!!!!!!!

  • cran1
    cran1 Member Posts: 139
    #21
    Dang goats!!!!!!

    Dang goats!!!!!!

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