I'm stunned

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

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!

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

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

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~

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 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.

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

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 said:

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

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