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Baw41
Baw41 Member Posts: 8

Hello,

My member name is Baw41 and I am a male age 41. Sometime in August 2015, I started feeling symptoms of a protatitis and went to see my family doctor. One of my symptoms included large amounts of blood in my urine. The doctor provided antibiotics for a few months and nothing seemed to get better. My doctor then ordered a CT urogram without and with contrast. During the test we've found a left inferior renal lesion measuring 2.4 cm that demonstrated dense imaging characteristics on all phases of imaging. This is lesion was labeled as indeterminate. It was suggested to perform an MRI, which would be most effective test for further characterization.

Finally, my family doctor suggested that I should be refered to a Urologist. But before doing so he left my health care provider. I took it upon myself to schedule the appointment with an Urologist. I had a cystoscopy, which can back negative for any issues. I had an MRI that same day. I few days later I received my MRI results from the Urologist. She wanted to refer me to a urologic oncologist for further review of the results. The test was an MR abdomen without and with contrast. There was a 2.5 cm solid enhancing mass in the inferior pole of the left kidney and is most consistent with renal cell carcinoma.

I've read many of the "scholarly" articles by various urologic oncologist to familarize myself with renal cell carcinoma. I was expecting that the urologic oncologist would suggest a partial nephrectomy because of my age and size of the mass. The MRI showed no other signs of potential cancer. When I went for my initial visit on Thursday, February 4th, my assumptions were validated. The scheduling nurse will call on Monday or Tuesday to schedule my surgery, which should be late February or early March. Also, the urologic oncologist still thinks I have a prostatitis to go along with the mass. Luckily my body new something was wrong. Otherwise it may be worse...

I know that the odds are against me that it is probably cancer, but I'm holding out hope. My prognosis should be good, but it still makes me extremely nervous. Any support I can receive is much appreciated.

Thanks,

Baw41

Comments

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Parallels

    Hey, Baw41,

    Sounds like we have a lot in common.  I had gallbladder issues back in August of 2014, which sent me on the road to getting an ultrasound where my 2.8cm mass was initially found.  It is crazy how things work out sometimes.  Crazy and lucky.  

    I was quoted a 98% chance of no recurrence within 5 years (the 5 year thing, for people as young as we are, is still scary but that's the standard they use) and I have no reason to think that you would see anything different.  

    As I'm sure many will echo here, just make sure you are comfortable with the care team.  Make sure they know what they're doing.  I'm not sure where you're located but push for a surgeon with a lot of experience in what they do.  A great surgeon will really help with the recovery process (and also getting clean margins, which is the most important thing).

    As I think you already know, it could be a lot worse.  Once you get it out, you'll feel a hell of a lot better.

    - Jay 

  • foxhd
    foxhd Member Posts: 3,181 Member
    Hi baw,

    Are you sure it's prostaititis? I've seen several posts here over the last few years. It has not been unusual for complaints to surface re: testicular pain. It seems the left testicle shares a blood supply with the kidney. For some, it has been their chief complaint. Then comes the hematuria, ct scans,(or US, depending on insurance), and then scheduled surgery. This sounds like one of these cases where you need to blow that town and go someplace where the doctors are experienced in renal masses.

  • icemantoo
    icemantoo Member Posts: 3,361 Member

    Parallels

    Hey, Baw41,

    Sounds like we have a lot in common.  I had gallbladder issues back in August of 2014, which sent me on the road to getting an ultrasound where my 2.8cm mass was initially found.  It is crazy how things work out sometimes.  Crazy and lucky.  

    I was quoted a 98% chance of no recurrence within 5 years (the 5 year thing, for people as young as we are, is still scary but that's the standard they use) and I have no reason to think that you would see anything different.  

    As I'm sure many will echo here, just make sure you are comfortable with the care team.  Make sure they know what they're doing.  I'm not sure where you're located but push for a surgeon with a lot of experience in what they do.  A great surgeon will really help with the recovery process (and also getting clean margins, which is the most important thing).

    As I think you already know, it could be a lot worse.  Once you get it out, you'll feel a hell of a lot better.

    - Jay 

    Welcome

    Baw41,Welcome to the club that no one in their right mind would volunteer to join. I joined 13  1/2 lucky years ago. Baring the unexpected you are scheduled for a full and   complete recovery from the surgery alone. I wish I could tell you that the surgery is painless, but I would be laughed off this board. Every so often the mass turns out benign, but I wouldn't count on that happening.

     

     

    Icemantoo

  • Baw41
    Baw41 Member Posts: 8

    Parallels

    Hey, Baw41,

    Sounds like we have a lot in common.  I had gallbladder issues back in August of 2014, which sent me on the road to getting an ultrasound where my 2.8cm mass was initially found.  It is crazy how things work out sometimes.  Crazy and lucky.  

    I was quoted a 98% chance of no recurrence within 5 years (the 5 year thing, for people as young as we are, is still scary but that's the standard they use) and I have no reason to think that you would see anything different.  

    As I'm sure many will echo here, just make sure you are comfortable with the care team.  Make sure they know what they're doing.  I'm not sure where you're located but push for a surgeon with a lot of experience in what they do.  A great surgeon will really help with the recovery process (and also getting clean margins, which is the most important thing).

    As I think you already know, it could be a lot worse.  Once you get it out, you'll feel a hell of a lot better.

    - Jay 

    Surgeon and Care team

    Hey Jay,

    Thanks for the reply. We were both extremly lucky. I live outside of Milwaukee, Wisconsin and my Urologic Oncologist is the diector of Prostate and Urologic Cancer Program at Froedtert and the Medical College of Wisconsin. So, I'm hopeful that they will make me comfortable.

    -Baw41

  • Baw41
    Baw41 Member Posts: 8
    foxhd said:

    Hi baw,

    Are you sure it's prostaititis? I've seen several posts here over the last few years. It has not been unusual for complaints to surface re: testicular pain. It seems the left testicle shares a blood supply with the kidney. For some, it has been their chief complaint. Then comes the hematuria, ct scans,(or US, depending on insurance), and then scheduled surgery. This sounds like one of these cases where you need to blow that town and go someplace where the doctors are experienced in renal masses.

    Hey foxhd,
    They want to

    Hey foxhd,

    They want to remove the mass through surgery, but feel that some of my pain of my pelvic floor is caused by infection. I do have pain in my left testicle and blood in my urine and semen. I hope removing the mass will fix all my issues.

    -Baw41

  • Baw41
    Baw41 Member Posts: 8
    icemantoo said:

    Welcome

    Baw41,Welcome to the club that no one in their right mind would volunteer to join. I joined 13  1/2 lucky years ago. Baring the unexpected you are scheduled for a full and   complete recovery from the surgery alone. I wish I could tell you that the surgery is painless, but I would be laughed off this board. Every so often the mass turns out benign, but I wouldn't count on that happening.

     

     

    Icemantoo

    Icemantoo,
    Thank you for the

    Icemantoo,

    Thank you for the welcome. I appreciate the optimizism.

    -Baw41

  • foroughsh
    foroughsh Member Posts: 779 Member
    Baw41 said:

    Hey foxhd,
    They want to

    Hey foxhd,

    They want to remove the mass through surgery, but feel that some of my pain of my pelvic floor is caused by infection. I do have pain in my left testicle and blood in my urine and semen. I hope removing the mass will fix all my issues.

    -Baw41

    Wellcome to the board no one

    Wellcome to the board no one would voluntier to join! I'm sorry for all you're going through but as you said, thanks you body to let you know something was wrong. I cross my fingers for a benign one but even if it's not, you have a great chance to cure by just nephrectomy. You're young and your body learns how to handle surgery's side effect so soon. A neph isn't a walk in the park but not that bad that many think. I stayed at hospital for two nights and Then came back home, while I had some one with me for unpredicted situations but it went well, we were on a short abroard trip 28 days after the surgery and my friend over there couldn't believe I had neph when I told him during our last night over there. Everybody is different some may heal sooner some not but you will heal for sure, stay positive.Forough

     

     

  • Dutch1
    Dutch1 Member Posts: 152
    Baw41 said:

    Surgeon and Care team

    Hey Jay,

    Thanks for the reply. We were both extremly lucky. I live outside of Milwaukee, Wisconsin and my Urologic Oncologist is the diector of Prostate and Urologic Cancer Program at Froedtert and the Medical College of Wisconsin. So, I'm hopeful that they will make me comfortable.

    -Baw41

    Froedtert

    Baw;

    I had my surgery at Froedtert three years ago.  In my opinion, they know what they are doing there.  Very good care.  You are in good hands with them.

    Best of wishes.

     

    Dutch

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    foroughsh said:

    Wellcome to the board no one

    Wellcome to the board no one would voluntier to join! I'm sorry for all you're going through but as you said, thanks you body to let you know something was wrong. I cross my fingers for a benign one but even if it's not, you have a great chance to cure by just nephrectomy. You're young and your body learns how to handle surgery's side effect so soon. A neph isn't a walk in the park but not that bad that many think. I stayed at hospital for two nights and Then came back home, while I had some one with me for unpredicted situations but it went well, we were on a short abroard trip 28 days after the surgery and my friend over there couldn't believe I had neph when I told him during our last night over there. Everybody is different some may heal sooner some not but you will heal for sure, stay positive.Forough

     

     

    Well, I am so sorry this is

    Well, I am so sorry this is happening to you. You are so young too. But that will be to your advantage.

    Hopefully, with your tumor so small, you'll be stage one. You'll be monitored for awhile.

    And I too live outside of Milwaukee. Mine was done by a wonderful Urologist/surgeon who has two offices

    one in Wauwatos and one in Franklin where I live. He does robatic/laproscopic surgery if possible.

    Make sure you ask them about robatic surgery option.

    I also wore a lumbar velcro wrap to support my abdomen after two surgeries.

    I had little to not pain by placing dry ice blocks inside that wrap, but over clothing.

    It reduced the swelling.

    You'll be okay. BUT I would listen to Fox and make sure your prostate issue is correctly addressed.

    Sending you healing vibes. We'll walk this journey along side you if you want us to.

    Warmly, Jan

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Jan4you said:

    Well, I am so sorry this is

    Well, I am so sorry this is happening to you. You are so young too. But that will be to your advantage.

    Hopefully, with your tumor so small, you'll be stage one. You'll be monitored for awhile.

    And I too live outside of Milwaukee. Mine was done by a wonderful Urologist/surgeon who has two offices

    one in Wauwatos and one in Franklin where I live. He does robatic/laproscopic surgery if possible.

    Make sure you ask them about robatic surgery option.

    I also wore a lumbar velcro wrap to support my abdomen after two surgeries.

    I had little to not pain by placing dry ice blocks inside that wrap, but over clothing.

    It reduced the swelling.

    You'll be okay. BUT I would listen to Fox and make sure your prostate issue is correctly addressed.

    Sending you healing vibes. We'll walk this journey along side you if you want us to.

    Warmly, Jan

    Hi BAW41I am sorry to read

    Hi BAW41

    I am sorry to read about your news. But am glad you found this forum. There is a wealth of information, support and experience to draw from here. It sounds like you are already getting yourself informed - and according to Dutch you are in good hands.

    Believe me, once the surgery is behind you, it will be great. The surgery will be okay. No picnic, but really not that bad. Please let us know about a surgery date, and post here whenever you have a question or concerns, or worries.

    Hugs

    Jojo

     

  • hardo718
    hardo718 Member Posts: 853 Member
    Jojo61 said:

    Hi BAW41I am sorry to read

    Hi BAW41

    I am sorry to read about your news. But am glad you found this forum. There is a wealth of information, support and experience to draw from here. It sounds like you are already getting yourself informed - and according to Dutch you are in good hands.

    Believe me, once the surgery is behind you, it will be great. The surgery will be okay. No picnic, but really not that bad. Please let us know about a surgery date, and post here whenever you have a question or concerns, or worries.

    Hugs

    Jojo

     

    Welcome BAW41

    As others have stated, not unusual to have symptoms elsewhere.......it's all connected.   Sounds like you have a good team working with you & would imagine your docs will check out your whole urinary tract.  If not, pressure them to do so.  Make sure you are comfortable with your surgeon and his or her capabilities, if not, get a second opinion or third, etc.  I, like many others here, had the robotic version of surgery to remove "Bob the Blob" and luckily only had a partial nephrectomy.  But that is dependant on many factors such as size, location of the mass, etc.  Recovery was still a beast, but like Jan I had a lumbar wrap and that helped immensely!  (wasn't aware of the dry ice thing she mentions, wish I would have known of that)

    Keep us posted on progress.  I'll keep you in my prayers.

    Donna~

  • Baw41
    Baw41 Member Posts: 8
    hardo718 said:

    Welcome BAW41

    As others have stated, not unusual to have symptoms elsewhere.......it's all connected.   Sounds like you have a good team working with you & would imagine your docs will check out your whole urinary tract.  If not, pressure them to do so.  Make sure you are comfortable with your surgeon and his or her capabilities, if not, get a second opinion or third, etc.  I, like many others here, had the robotic version of surgery to remove "Bob the Blob" and luckily only had a partial nephrectomy.  But that is dependant on many factors such as size, location of the mass, etc.  Recovery was still a beast, but like Jan I had a lumbar wrap and that helped immensely!  (wasn't aware of the dry ice thing she mentions, wish I would have known of that)

    Keep us posted on progress.  I'll keep you in my prayers.

    Donna~

    Thanks for the welcome

    My surgery is scheduled for March 3rd. I'll have a robotic partial nephrectomy. The mass is located at the bottom of my left kidney. The surgeon is confident that the surgery should be straightforward. 

  • hardo718
    hardo718 Member Posts: 853 Member
    Baw41 said:

    Thanks for the welcome

    My surgery is scheduled for March 3rd. I'll have a robotic partial nephrectomy. The mass is located at the bottom of my left kidney. The surgeon is confident that the surgery should be straightforward. 

    Awesome!

    So you have your surgical date, now is the time to prepare as much as possible for your downtime to recover, a couple of weeks or so.  Hopefully you have a support system around you?  If not, you'll need to get some meals prepared in advance, although I wasn't able to eat more than a few bites at any given time.  That's pretty typical since they're moving everything around inside, swelling, etc.  Have plenty of fluids readily accessible.  Also, try to get that lumbar support, really helps when trying to move around and keeps you feeling like it's all going to hold together.  Be prepared that you will feel like you've been hit by a truck, but it certainly beats the alternative.  One more thing that's very helpful, typically they'll give you a device after surgery called an Incentive Spirometer.  (for deep breathing exercises)  I try to advise getting your hands on one before surgery so you can see what you're capable of and therefore that will be your target to work toward after surgery.  As a former Respiratory Therapist, I can tell you that when you have pain, combined with pain meds and the sedation of surgery it's normal to breathe more shallow and this combination can be detremental to your lungs.  Last thing you'll need is a pneumonia setting in.

    Ok, stepping off my soapbox now.  Smile

    Donna~

  • myoung790
    myoung790 Member Posts: 75
    Hi and welcome.  I'm a 42

    Hi and welcome.  I'm a 42 year old woman who had a nephrectomy for RCC roughly a year and a half ago.  I was 40 when diagnosed and surgery at 41.  Made a complete recovery and now just fighting lots of cysts on the remaining kidney.

    Best of luck in your upcoming surgery.  Should be relatively uneventful for you.