I'm stunned

stub1969
stub1969 Member Posts: 966 Member

During a routine CT scan to evaluate my progress with Medullary Sponge Kidney a small suspicious nodule was found.  An ultra sound was ordered and it was confirmed to be a solid mass 5.8 X 4.4 X 4 cm protruding from the inferior lower pole of my right kidney.  I met with my kidney doctor yesterday and he told me about the size and that there is suspicion it is RCC.  He tried help with my level of fear and did a good job, but man, I feel like a truck has hit me.  He's setting up an appointment with a Urologist and I hope to meet with him/her in the next week of two. 

I'm a 47 year old man married with three wonderful children.  I'm in good shape.  I run between 20-25 miles per week and lift weights at least 3 times per week.  I eat healthy, don't smoke, and have a beer or two a couple times a week.  I'm at a loss with this mass on my kidney!

The other night when my anxiety was building in preparing for my doctor visit, I stumbled on this dicussion board. First and foremost, I'd like to say thank you!  Thank you for your supportive nature and for helping ease my mind enough so I could sleep.  Reading the different posts, I was able to get answers to some of the questions racing through my head.  I was also able to better prepare for my initial doctor visit.  I do have a question about getting a second opinion: Many if not most of you on this board advocate for a 2nd opinion, did you have the Urologist make the contact or did you search out and arrage the second visit? 

Thanks again!

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    You feel like the rest of us felt

    stub,

     

    We all were scarred sh--less when we were told we had what they thought was Kidney Cancer and the first thing they want to do is yank out your kidney. THAT WAS ME 14 YEARS AGO. Before seeking a second opinion get the first visit with a Urologist behind you ASAP. Given the size of your mass (small to medium) time is important. You want to make certain that the Urolodist you see also does Kidney Surgery and that you are comfortable with him. Because you also have other kidney disease issues the Urologist you choose must also consult with your Kidney Doctor who I presume is a Nephrologist. Keep us posted and we will help you thru this.

    If you feel you need a second opinion do so. Most Urologists who do Kidney Cancer are trained in Laproscopic surgery ao look for one who does that in their Bio. You may want to consult with a Urologist affiliated with a Medical School if one is available for your second opinion.

     

     

    Icemantoo

  • stub1969
    stub1969 Member Posts: 966 Member
    Thanks

    Thanks Icemantoo,

    We live about an hour away from the Rochester Mayo Clinic which was rated the 3rd best cancer hospital for '14-'15 (this was part of a recent post on this message board).  That is where I'd try to get that second opinion.  I'm trying to wait patiently for the appointment call.  The nurse that was setting it up said that she would do her best to get it scheduled for next week.

    My main concern is the time between my visit with the Urologist and the second opinion.  I want to keep this mass in the small to medium range and not let time slip so it grows.  Once I find out who the Urologist is, I'll do some research on his Bio.

    You know, the crazy part in this is that I believe the MSK disease may have saved my life.  My kidney doctor was doing the scan to see how the calcification of stones was doing and this came up.  He is new at our hospital and wanted to have up-to-date labs so he could provide the best care.   I know that many times kidney cancer is found incidentally--well I'm now added to that statistic.  Thanks again!

     

  • Pandabear1011
    Pandabear1011 Member Posts: 123 Member
    Hi

    I know exactly how you are feeling right now. I had a 6.0 x 4.5 x 3.5 cm stage 1 tumor removed along with my right kidney in May 2014. I am also a non-smoker. Eat healthy and exercise. Also, no cancer history in my family at all. They don't know why I got it. Maybe environmental causes.  I live in the Houston, Texas area, so I went to MD Anderson. You might want to consider that second opinion at Mayo (a center of excellence as well). My doctor specializes in kidney cancer. That gave me peace of mind. I am now over 2 years out and still cancer free. I go for my scans next week. If all is well I will move to yearly visits. Best wishes to you!

  • stub1969
    stub1969 Member Posts: 966 Member
    I DO appreciate your input

    Thanks Pandabear,

    The size of our tumors is very similar.  Can I ask why they didn't do a partial?  Did location get in the way?  As I've mentioned, I have sponge kidney disease---sounds worse than it is (at lease for me).  I still produce stones but the medication to control it has been working for a long time.  95% of the time I pass stones without any issues, heck sometimes I don't realize one is coming until I see it after it passes.  I am one of the lucky ones in this regard.  I'm hoping that I can have a partial so I don't lose more kidney function (a common feature with MSK).

    I really want to reiterate my thanks for the input provided.  I'm pretty worried.  Honestly, I'm scared out of my wits.  Looking forward to my meeting with the Urologist and start moving on taking care of this mass..

     

    Thanks again!

  • medic1971
    medic1971 Member Posts: 225 Member
    Hi

    Hey Stub, sorry to meet like this.  My name is Jason.

    Couples of things to keep in mind, more than likely you’ve had this for many years so waiting to get that second opinion is advisable.  On average most rcc tumors grow at about 0.5cm a year

     It's not really so much a second opinion, it's find a urologist who specializes in this area.  Most urologists only 6 renal tumors a year find someone who sees more than 6 a year, please.  The best outcome is to try and save your kidney if possible, but if not it’s not the end of the world.  My friend’s husband donated a kidney for is his sister and he’s doing just fine.  It sounds like you are in great health so I doubt your body would even miss it. 

    I self-refereed myself to MD Anderson.  MD Anderson is a one hour flight from where I live.  If you are not hearing back from office's in a timely manner, call them, bug them, and be a pain rear if needed.  I work in healthcare and trust me the squeaky wheel gets the grease.

    I think Rochester Mayo Clinic is an excellent hospital and you would be in great hands there.  If you started off there, I probably would not even seek a second opinion, but that's just me.

    Anxiety was a problem for me too.  I just asked my PCP for something to help the anxiety and he gave me 0.25mg of Xanax.  I just used it night to help me sleep  I waited almost four months after the discovery of my mass and surgery.  That was a long four months...  

    Hang in there, focus on the now, ask questions, and we are here to help answer questions!  Keep is posted, please.

    Jason

  • Shecka1121
    Shecka1121 Member Posts: 117 Member
    Hi Stub, I was scared to

    Hi Stub, I was scared to death as well.  I am sorry this happened to you, but the silver linging is your mass appears small and many will tell you that they did not have any issues after it was removed.  Stay away from Google as most of that data is old.  Very old.

     

    I wish you the best and many prayers.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Full v. Partial

    Stub,

     

     

    My decision was easy. They were not doing partials 14 years ago. It was all or nothing. Mine was a tad smaller than yours.

     

    Some observations. The size of your  mass is at the upper limits for a partial The surgeon will also factor in the location and your MSK issues in his recommendation/  decision as to how to proceed. Which one you should proceed with is above my paygrade.

     

     

    Icemantoo

  • Pandabear1011
    Pandabear1011 Member Posts: 123 Member
    edited July 2016 #9
    Stub, Yes, our tumors are

    Stub, Yes, our tumors are very close in size. The reason I didn't have a partial was because the tumor was located in the middle of my kidney. He did give me the option for a partial but said it would only save 20 or 30% of my kidney. I decided to go with the radical. So far so good! :). I have read of other people in the 6cm range getting partials. So, it could happen for you. Take care, Panda

  • hardo718
    hardo718 Member Posts: 853 Member
    Welcome

    Mine was a bit smaller than yours, but no matter the size, those little beasts carry a lot of anxiety with them.  Mine was a partial via robotic lap, which is dependant on location of the tumor and other factors that your doctor will discuss with you regarding your previous diagnosis.  By all means, as Jason said, keep hounding those doctor offices, and if you must, definitely request xanax to help with anxiety.  Master Xanax became my best friend for a while pre & post surgery.  ;-)

    One other thing, my husband's best friend was just diagnosed with a kidney mass (we live in Illinois) and he tried to get another opinion at Mayo in Minn.  He was told pretty emphatically he needs to be biopsied before they'd see him!  Not sure of the exact facts there, but thought I'd pass it along.

    My doctor is double specialized: urology / oncology.  In my opinion, that's the type of doctor that is ideal.  Whoever you decide to go with, make sure it's someone you feel comfortable with.  Someone that will take the time to answer all your questions regarding surgery, follow-up, what to expect, etc.  My first doctor wasn't the right doctor for me because he wouldn't make eye contact with me, just looked at my films on the computer and said, very nonchalantly it was 80-90% chance of cancer.  He was correct as it turned out, but he also wanted to cut me from stem to stern.  As soon as I left his office I phoned my PCP and demanded a second opinion, told her what the first doctor said and also told her I did NOT want to see someone in the same practice as him. 

    Best wishes, keep us posted.  I'll be praying for you,

    Donna~

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member
    Hi Stub.  I'm Steve.

    Hi Stub.  I'm Steve.

    In December, 2013, I went in for my normal physical and as part of that, a test disclosed a micropscopic amount of blood in my urine.  My primary care doc referred me for a CT scan, assuming it was probably a kidney stone.  I had the scan and I actually went back the next day to get the results directly from the Radiologist.  When I read the report and saw the words "suspicious for renal cell carcinoma", I immediately drove to my primary doctor's office and waited for him to have a moment, which was thankfully only about a 10 minute wait (been going to him for 30 years, so he knows me well).  He took a look at the report and immediately said he was going to refer me to a urologist and that I had my choice of a urologist associated with a rather poorly run local hospital, another associated with a larger hospital, or Stanford Hospital and Clinics.  It think I said yes to Stanford before he got the full name out of his mouth.

    My insurance company took about a week to approve the referral and Stanford called me the day they recieved it (I didn't have to call at all) and asked me if I had any preference as to the doctor I saw.  I said no, assuming they were all quite good.  They set me up with a urologic oncologist that was simply wonderful.  My lesion was initially described as about 1.5cm x 1.3cm x 1.1 cm.  He told me that he wasn't convinced it was malignant and that the best course of action was to monitor it.  I asked if that would put me at any additional risk and he explained that if it was malignant, RCC typically grows very slowly and that this lesion was fully contained within the kidney, so there was little risk of it spreading in the time that we would re-evaluate.  He also told me that if I was uncomfortable having it inside, he could take it out, but he didn't want to reduce my kidney function if it wasn't necessary.  When I first went in to the appointment, my anxiety, on a scale of 1 - 10 was sitting at about 50.  By the time the appointment was over, it was at about a 2.

    Like you, I am a runner, I lift weights, I have never smoked and I have a beer or glass of wine once a month or so.  There's no family history of kidney cancer.  When I asked how I got it, he just shrugged and said, if it's malignant, it's just bad luck since you have absolutely no risk factors.

    Fast forward to this past April.  After 2-1/2 years, an ultrasound determined that the lesion had grown, a small amount of growth, but growth none-the-less.  His suggestion was to treat it.  I had the option of cryoablation or surgery.  He recommended the surgery because I was young (bless him for saying 60 is young!) and in good shape.  He brought the surgeon that would be seeing me in and I was told that the success rate of the surgery (a robotic assisted laparoscopic partial nephrectomy) was statistically higher than that of the abalation.  I chose to have the surgery done for that reason and because I figured I would feel better having the thing completely out of my body as opposed to having dead tissue sitting in there for a while after the ablation killed it.

    I had the surgery on June 22nd and was released less than 24 hours after the operation.  The doctor said it was, in fact, RCC, but a fairly rare form that is only present in about 5% of RCC cases, chromophobe RCC.  It's apparently a very non-aggressive form of RCC that rarely spreads and rarey recurs, so the surgeon put the success probablity at virtually 100%.  Still, I'll have scans every six months for a while, which is fine with me since I have had other abdominal issues in the past.

    Like icemantoo suggests, get yourself referred to a good urologic oncologist, one associated with a hospital that performs the robotic surgery.  I somehow have a little bit of confidence that the Rochester Mayo Clinic might have such a doc.....or ten.....on staff.

    I now it's a lot to deal with psychologically right now.  I think we all had a very similar reaction to what I describe above.....which is pretty much sheer panic.  But with the advancements that have been made in the treatment of RCC, there's a very good chance that you'll have a successful resolution to this.  Keep us appraised.

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member
    edited July 2016 #12
    hardo718 said:

    Welcome

    Mine was a bit smaller than yours, but no matter the size, those little beasts carry a lot of anxiety with them.  Mine was a partial via robotic lap, which is dependant on location of the tumor and other factors that your doctor will discuss with you regarding your previous diagnosis.  By all means, as Jason said, keep hounding those doctor offices, and if you must, definitely request xanax to help with anxiety.  Master Xanax became my best friend for a while pre & post surgery.  ;-)

    One other thing, my husband's best friend was just diagnosed with a kidney mass (we live in Illinois) and he tried to get another opinion at Mayo in Minn.  He was told pretty emphatically he needs to be biopsied before they'd see him!  Not sure of the exact facts there, but thought I'd pass it along.

    My doctor is double specialized: urology / oncology.  In my opinion, that's the type of doctor that is ideal.  Whoever you decide to go with, make sure it's someone you feel comfortable with.  Someone that will take the time to answer all your questions regarding surgery, follow-up, what to expect, etc.  My first doctor wasn't the right doctor for me because he wouldn't make eye contact with me, just looked at my films on the computer and said, very nonchalantly it was 80-90% chance of cancer.  He was correct as it turned out, but he also wanted to cut me from stem to stern.  As soon as I left his office I phoned my PCP and demanded a second opinion, told her what the first doctor said and also told her I did NOT want to see someone in the same practice as him. 

    Best wishes, keep us posted.  I'll be praying for you,

    Donna~

    Wow Donna.  That's some

    Wow Donna.  That's some pretty bad beside manner that first doctor had.  I was fortunate that the doctor I was referred to was not only very technically gifted, but was just an incredibly kind and caring person.  He didn't pull any punches when he told me things, but he also went through the time to not only presentthe information, but to explain it and to let my wife and I ask the 12 million questions we had and never once exhibited any impatience.  You're absolutely right that finding a doc that fits you both technically and professionally is a really important step in fighting this thing.

    Strange about the biopsy being required.  At Stanford, when I was given initial treatment options, they were biopsy, ablation or surgery.  I didn't think the biopsy made any sense, that it would be far better to just ablate it than to go through the hassle and discomfort of a biopsy just to have to go through more discomfort at the time of the ablation or surgery.  The doctor agreed, but said he needed to present that option in case I wasn't sold on the notion that the lesion was malignant.

  • stub1969
    stub1969 Member Posts: 966 Member
    Have I said this before?:)

    I so appreciate the input you all have shared.  The personal stories and suggestions from your experiences really does help.  You've helped me plot a path in my own journey.  As you know, and as many of you have stated, when this news is first handed to you not only are you in fear mode, but also grasping at the next step to take.  You've helped in both of these areas.  

    Many thanks!

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    Ditto the size

    Stubb,  I too had a tumour 5x5x7....as big as they come and stay stage I.  This was almost 3 years ago.   Radical right nephrectomy due to is size, proximity etc....  I did have one risk factor, no smoker but a former user of smokeless tobbacco. Otherwise I was a triathlete and former swimmer.  No history of renal cancer in my family though other cancers are.  Best advice I got: dont spend too much time on google.  Do get familiar with Smart Patient.com,and  there is lots of solid emotional support in this group here.   Hang in there, you will get past it.

    Jack

  • stub1969
    stub1969 Member Posts: 966 Member
    Thanks Jack

    When the first hint that something was wrong I immediately started searching Google.  I'm in K-12 eduction as a profession and we spend a great deal of time working with kids around appropriate internet searchs.  I thought it was the logical thing to do.  I was really getting myself worked up with the information that I was finding and reading until I stumbled onto this discussion board.  I've found helpful information here and, most importantly, the support that I really needed as a person that just found out about a kidney mass.

    I did take your advice and spent some time on smartpatients.com.  I'll be honest, I'm not quite ready for their stories. 

    Take care!  It's a beautiful late summer day in the mid-west.

  • jason.2835
    jason.2835 Member Posts: 337 Member
    edited July 2016 #16
    2nd opinion

    Stub,

    "Stunned" doesn't even come close to the range of emotions that swirl around, I'm sure.  It's a situation that some people in your life will never understand.  The best thing you can do is try to stay rational and know that your situation, with a tumor less than 6cm, will likely be considered Stage 1 and your prognosis will likely be very good.  

    I've been on this board almost 2 years now, and I've seen all kinds of craziness when it comes to second opinions.  Some urologists will actually say, "Why do you need a second opinion?  We got it all."  At that point, it's time to thank the urologic surgeon for his or her service and find another doctor or oncologist immediately.  In my case, the surgeon takes time to follow all of his patients to the letter of the guidelines, so I've stuck with him.  He's very blunt, honest and very thorough.  So you have to decide based on your experience with the doctors.

    I will echo what some say on this board; MOST urologic surgeons do not see a ton of kidney cases per year.  They specialize in prostate cancer because it is far more prevalent.  It is not a bad thing to ask plenty of hard questions of your surgeon.  After all, they are going to be opening you up and you want someone who is proficient and knows what they are talking about.  If you don't feel comfortable with the surgeon, find another one.  It's your life we're talking about, after all.  You want to make sure that the surgeon is confident that they can safely get it all, if they are talking about a partial.  I was scheduled for a partial, but some safety issues arose during the surgery and he had to take the whole left kidney.  

    <<WARNING: NOTHING I AM ABOUT TO SAY BELOW HAS ANY BEARING ON MEDICAL FACT, IT'S JUST THE WAY I FEEL>>

    In my opinion, I feel better having had the radical.  Knowing that the whole diseased kidney was removed puts my mind more at ease.  I am sure that were it not removed I would feel better about not having to worry about kidney function issues down the road... But all in all I would think that the chance of recurrence is a little bit greater with a partial since they could be leaving some cancer behind.  Chopping the whole kidney out, putting it in a bag and removing it just makes me feel safer.  But, as I said, the medical research of recurrence between partials and radicals are virtually neck-and-neck.  So what I'm saying is moot.  

    There are just things that we survivors have to tell ourselves so that we can return to our lives and not constantly worry about cancer.  I wish I could tell you that the day after the surgery all of your fear will go away, but I think we both know that's laughable.  It will take a good few months to move on mentally.  It will never go away completely.  There's a reason we all come back here around scan times.

    - Jay 

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    stub1969 said:

    Thanks Jack

    When the first hint that something was wrong I immediately started searching Google.  I'm in K-12 eduction as a profession and we spend a great deal of time working with kids around appropriate internet searchs.  I thought it was the logical thing to do.  I was really getting myself worked up with the information that I was finding and reading until I stumbled onto this discussion board.  I've found helpful information here and, most importantly, the support that I really needed as a person that just found out about a kidney mass.

    I did take your advice and spent some time on smartpatients.com.  I'll be honest, I'm not quite ready for their stories. 

    Take care!  It's a beautiful late summer day in the mid-west.

    Surprise!

    You wouldnt believe hom many of us are teachers or High School employees. 

    Youre in the worst bit right now, nothing is as bad as your fear will make it. Once you start getting treatment and you actually have something to do, it gets a lot easier.

    I taught History, classics and Philosophy

  • Heyker
    Heyker Member Posts: 36

    Surprise!

    You wouldnt believe hom many of us are teachers or High School employees. 

    Youre in the worst bit right now, nothing is as bad as your fear will make it. Once you start getting treatment and you actually have something to do, it gets a lot easier.

    I taught History, classics and Philosophy

    I am..

    I am a special education teacher. I am taking this coming year off to recoup from 2 major surgeries in 3 months. 

  • sledhead
    sledhead Member Posts: 11
    edited July 2016 #19
    Mayo Clinic

    Stub,

    Check out Dr. Brad Leibovich at the Mayo Clinic. He is an expert urologist/oncologist who also happens to be an avid rcc researcher and a brilliant surgeon. He performed my 10cm radial nephrectomy in 2012 without incident and I highly recommend him. He is knowledgable and easy to talk to. There is even a kidney scoring system named after him (Leibovich Score). I would request him if I could as he very experienced and has performed countless kidney surgeries.

    Best of luck to you and keep us informed.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    Hi, Stub -

    I'm just a little way down the road in front of you. I'm waiting for my pre-op. It's generally other things that they're looking for when they happen across cysts and tumors in our kidneys, in my case I'm delighted I had a nasty bout of kidney stones AND there was still a wee bit of blood in my urine. Otherwise... well, I'd still be content in my ignorance and the little alien would be lurking quietly and undiscovered still.

    Also like you, I'm fit and eat well and... Well if they should ever find something that they can directly connect to all forms of cancer or kidney cancer, we'd at least try to "Just say no-no-no-NO!" to it and hope it worked retroactively.

    It would've been super easy for me to work myself into a Regular State when I got the news (In fact, when I was younger, working myself into a state was a finely honed life skill I possessed...). Anyway, in a fortuitous moment of clarity, I thought about how I was doing / what I was feeling a couple of weeks earlier when I had no clue. Was the tumor still there? Of course. Was I freaking out? No. That's the "me" I've tried to channel since then although there are times when I'm totally not convincing myself and am ready to activate the all-wheel drive and downshift into "scared sh*tless" mode. So I take a friend with me to my appointments. I get on my bike. I log on to this website. I don't self-refer to Dr. Google. Stuff like that. You've already started on that trail, your body has obviously been your friend for a while, you've got family, not to mention a whole bunch of good stuff going for you that we don't know about. Lift some weights, build a blanket fort with your kids, hang in there, keep us posted. 

    Jerzy

  • stub1969
    stub1969 Member Posts: 966 Member
    You won't believe this, Sledhead

    I took the advice many of you had and spent a little time researching the Bio's of the Urology doctors at both my local hospital and at Mayo.  I'm sure it comes as no surprise that Mayo has a staff that is very skilled and specialized in the area that many of you mention.  Sledhead, Dr. Leibovich was one of the doctors at Mayo that was at the top of my list.  Unfortunately, my local hostipal does not staff a doctor with these same skills.  All of them only list general Urology and one lists bladder reconstruction.  Even though I made an electronic appointment request last night, I'll call my kidney doctor on Monday to see if he could make a referral to Mayo. 

    Jerzy--I really do appreciate your positive attitude.  It seems so strange that I feel this good, but have this "thing" on my kidney.  I'm still running and exercising without issues.  Makes me really appreciate how lucky I was.

    Thanks again all.  Your words and recommendations are worth their weight in gold.