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I'm stunned

stub1969's picture
stub1969
Posts: 822
Joined: Jul 2016

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!

icemantoo's picture
icemantoo
Posts: 3244
Joined: Jan 2010

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's picture
stub1969
Posts: 822
Joined: Jul 2016

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
Posts: 123
Joined: Jun 2014

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's picture
stub1969
Posts: 822
Joined: Jul 2016

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's picture
medic1971
Posts: 192
Joined: Sep 2015

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
Posts: 114
Joined: Apr 2015

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's picture
icemantoo
Posts: 3244
Joined: Jan 2010

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
Posts: 123
Joined: Jun 2014

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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's picture
Bay Area Guy
Posts: 391
Joined: Jun 2016

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.

Bay Area Guy's picture
Bay Area Guy
Posts: 391
Joined: Jun 2016

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.

stub1969's picture
stub1969
Posts: 822
Joined: Jul 2016

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's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

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's picture
stub1969
Posts: 822
Joined: Jul 2016

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.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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
Posts: 36
Joined: Jun 2016

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

jason.2835
Posts: 337
Joined: Nov 2014

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 

sledhead
Posts: 11
Joined: Dec 2014

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's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

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's picture
stub1969
Posts: 822
Joined: Jul 2016

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.

 

stub1969's picture
stub1969
Posts: 822
Joined: Jul 2016

Wanted to let you know that Mayo got back to me early this morning (I submitted an electronic appointment request on Saturday night).  I go in next Thursday for chest CT and blood work and then meet with Dr. George Chow on Friday morning.  Sledhead--I was hoping for Dr. Leibovich, but I'm sure they do a great job working as a team.  Donna--No biopsy was needed, so I'm not sure of the details of your husband's friend. 

It's going to be a long two weeks--really having trouble sleeping and staying focused on other things.  I'll be honest, the worst part will be talking to our three kids after the appointment.  We have a daughter that will be in 5th grade this year and she has the biggest heart and is so caring.  I'm afraid she will be a wreck worrying about me and mom.  Our other daughter will be a high school senior this year (what a great thing for her to think about her senior year) and our son is a junior in college.  Those of you that have been through this any good advice for this conversation?  Obviously, we will try to stay positive.

 

Thanks again--Stub

icemantoo's picture
icemantoo
Posts: 3244
Joined: Jan 2010

Stub,

You are definately going to be in good hands  with Dr. Chow. He has written many professional papers on Kidney Surgery many in conjunction with Dr. Liebovich. He received most of his specialty training from the Cleveland Clinic. As for the size of your Kidney tumor there is no reason to expect other than a positive diagnosis after surgery. Besides what ever questions you have about the surgery (which is pretty routine with your size mass) you will need to ask about your long term recovery as a result of your Kidney disease issues. He may also refer you to or consult with a Nephrologist at Mayo clinic. There is no way to sugar coat the surgery. The recovery, especially the first week is painful. If I told you otherwise I would be laughed off this forum. As for discussing this with your  15 year old daughter, you are having routine surgery to remove your Kidney (or part of it). You will be laid up for a month or 2 and that you fully expect to be at her childrens' weddings. I was nephed 14 years ago today and am so old that Leonardo himself did ny surgery before he invented the robot.

 

 

Icemantoo

Kangaroorex
Posts: 45
Joined: Jul 2016

Yes its a horrible thing but your chances of escaping this with only a missing organ and some interesting scars are excellent.  Just tell her the facts and offer plenty of support.  My wife and I had the job of telling my HS sophmore and middle schooler about my chances.  It was a scary moment for everyone.  One piece of advice i do offer, don't lie.  There is way too much information on the internet for you to have any chance of covering up what you have or how bad it is and the kids are all really good at finding that kind of information out.  I told our children and within an hour pretty much every statement we made was completely fact checked. 

Good luck, its going to be hard but I think you can get through it

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

Most RCC is slow growing. The difference is if it is in the 1-3% that is sarcomitoid.  Assummine lower grade (less agressive), the tumors grow about 0.5 cm/yr.  A few weeks will not make a difference.

lcsvb's picture
lcsvb
Posts: 41
Joined: Jan 2016

I would not be worried about the size changing much between now and your appointment and eventual impending surgery. It is great you can go to a place that specializes in these surgeries. I found it well worth it to go the 90 min drive to the Cancer Center for surgery. It is nice to recover surrounded by people all going through the same thing you are. These RCCs pack a powerful punch but tend to take their time before becoming beasts! Like a lot of us on here, you caught it before it hit the 7cm size mark. Praying you find a way to relax a bit and look forward to hearing about your successful surgery! 

Skagway Jack's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

Stub,  I echo the rest of the forum that it is slow growing.  I discovered mine in early Sept and removed in Mid October(5 weeks).  That was as fast as I could make all the arrangements and get the Docs availability.  The Doc had actually advised that he would not want to wait later than the following spring.  My answer to that was how soon can we get this thing done? It seemed like forever, but it all came out and within 6 weeks I was back at work etc.  Take your time healing if you can. 

 

stub1969's picture
stub1969
Posts: 822
Joined: Jul 2016

I've said it before, but I will say it again---Thank you. 

 

Stub

TKDgal
Posts: 12
Joined: Aug 2016

I am in a similar situation although my tumor is only 3.7. I am 39 with two children. We broke the news to them today and they handled it well. I feel like I'm stuck in limbo land and just want this out of me. 

tiger09
Posts: 9
Joined: Aug 2016

Hi Stub,

You've received some good advice thus far. You are also going to an excellent hospital and will get great care I'm sure. The size of your tumor is very small; I wouldn't worry about it growing much before your surgery. Mine was much more advanced than yours. Like you, I'm young, healthy and active; I was a little overweight before surgery but not obese. Not a smoker and don't drink much either. Try not to beat yourself up; it's unfortunately not much other than bad luck.

You'll likely be surprised at how well your kids take the news; they are usually quite resilient. My kids have handled this better than I have in a lot of ways.

stub1969's picture
stub1969
Posts: 822
Joined: Jul 2016

Hello everybody

I met with Dr. Chow this morning.  Essentially, they believe that the placment of my mass works really well for a robotic-assisted laparoscopic partial nephrectomy.  Dr. Chow says he is very experienced in this process.  The mass is protruding our the bottom of my kidney and (from what they can tell) is fully encapsultated.  No sign of any progression.  They have scheduled surgery for August 26. 

I can't tell you how much their optimism lowered my level of anxiety.  A special thanks to each of you that responded and gave me advice and assurance.  I'm so glad I made that appointment to Mayo.

Stub

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

That's great news, Stub! You're ahead of me now, but not by much. My surgery is scheduled for a little over a week after yours.

Jerzy

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Get rid of that little beast!  Sounds like you're in good hands.  Prepare for your downtime.

God Bless,

Donna~

stub1969's picture
stub1969
Posts: 822
Joined: Jul 2016

Good luck to you in your surgery and recovery, Jerzy.  You'll be in my praryers.

Donna, I appreciate your comments.  Your're right--this is a little beast.  I'm so so ready to get it out of me.  I'm not sure how much downtime there will be.  Doctor told me no lifting heavy objects for 6 weeks.  I'd like to be back to school with the kiddos after a couple weeks, but I'll have to see how it goes.  I'm not really a sit-around type of guy.

Take care and thanks again,

Stub

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Depends on what type of teacher you are. If you're a sitting down giving instructions kind of guy you might be OK. If your a stand up motivator moving sort of guy that might be a problem. Didnt you say you were sp Ed, one of the things that led me to quit is that, due to fatigue I lost a level of patience which made me a less effective teacher.

stub1969's picture
stub1969
Posts: 822
Joined: Jul 2016

Foots, I'm actually an elementary principal.  I love the work.  I know I'm biased, but I believe I get to work with the best teachers, students, and families.  I'm not in the office much throughout the day.  You'll find me throughout the school working with students, co-teaching in the classrooms, or getting "slimmed" (Usually this is in the winter months:)) in the preschool rooms.  But, unlike a teacher, I can reel it back and not be so active.  I just have to watch out for the running hugs that come my way!

Stub

Trebor27
Posts: 7
Joined: Aug 2016

Had some abdominal pain last week and I went to the doc. They gave me some antibiotics but said that I should get a CT scan of my upper right abdomen. Sure enough, they found a slightly less than 1 cm lesion in my right kidney. The good news, I guess, is that it's really small. I went to a Chinese medicine doctor who said i am blessed that my body told me about this problem early. But I'm not handling it well. Mine is apparently in the "mid-lower region" and I'm really hoping it's amenable to a partial but I guess that depends on the surgeon since I've read that they can't always get at tumors in the mid-region with a partial.

I'm very afraid and, like others on the board, have young children. The radiologist said there was a good chance that the lesion was angiomyolipoma since it was something called hyperechoic but I need an MRI. Other than some very mild heaviness in my lower back, which could be my imagination, I'm 100% fine. I had a scan on my kidney for something else in 2013 and it was clean so i know this thing has taken 0-40 months to form.

My sister died from colon cancer at age 32 (I'm 47). I don't have the heart to tell me parents that their only remaing child may have cancer never mind my 11 and 7 year old. Urologist test on Tuesday and then I hope a slew of tests immediately thereafter. My wife thinks it will be benign and we'll just watch and wait for years to come. She tells me to get on with work but I can't concentrate. My fear is running wild though. Very scared. Thanks for this board. If anyone knows any positive stories about treatment and survival, let me know. I think the internet tends to self-select many of the worst cases, which I totally get and am not critical about. The advice about talking with kids has been super.

If there is anything that I can do for anyone, let me know. 

 

 

icemantoo's picture
icemantoo
Posts: 3244
Joined: Jan 2010

Trebor,

 

We were all scare sh--less when we were told we had Kidney Cancer out of the blue. I sure was in the spring of 2002. So far yours is inconclusive and you may be confronted with a watch a wait approach. Either way with such a little buggar you will be fine. Nothing to worry about for now.  Even if it develops into the C word it is 100% curable at this size or even 3 or 4 time as big.

 

 

Icemantoo

Trebor27
Posts: 7
Joined: Aug 2016

Icemantoo -- Thanks for the kind words. Your story is really uplifting and you are very generous to be here posting all these years later. It's a sign of a good heart. I feel like a bit of a wimp having gone through some of the other threads since writing my first post. The walk-in clinic doc kinda freaked me out when she told me the results but I can see where the pros - doctors and patients alike - would say my outcome is almost certainly good. Guess we'll know more this week but I'm ready to take on any challenges.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

It never was worthwhile! I never thought I'd agree with a practitioner of chinese medicine but you ARE blessed it was found so soon. 1cm is as TINY as it is scary. Mine was 10 times that size and others here have bigger. Chances are it will be dealt with and you'll be faced with a life of yearly check-ups.

advice:

STOP SEARCHING THE INTERNET. IT IS EITHER OBSOLETE OR INSANE OR, MORE OFTEN, BOTH.

This is a good site, there is another called Smart patients which is also helpful.

Fear running wild? Cant concentrate? You and the rest of us, but with a lump your size I reckon youve got a very good chance to watch your children graduate from High school, run up student debt and return home,with inappropriate friends at the age of 22.

Good luck my friend and welcome.

LauraM3's picture
LauraM3
Posts: 27
Joined: Apr 2016

3rd Grade teacher.  I was diagnosed in Feb 2016. My left kidney was removed bc the mast was so huge.  I have 3 mets in my lungs.  I have been on Votrient and mets have decreased to less than 1cm in lung and NED everywhere else.  Praise God. 

 

Trebor27
Posts: 7
Joined: Aug 2016

I think your skepticism of Chinese medicine is probably well-founded. She told me to stop running on a treadmill because it is too hard on the kidneys. Which would probably be news to many people here, especially the guys discussing marathons and ironmans in the other thread. But I do like accupuncture for stress relief... And i like your vision of my future. I'll take it big-time. Thanks!

stub1969's picture
stub1969
Posts: 822
Joined: Jul 2016

There already is a shortage of underclass students entering the education field--which will have alarming effects on pre-K-12 education in the near future.  As Stomps has said in a recent post: "You wouldnt believe how many of us are teachers".  If this news gets out, then you may as well close educaiton departments in universities across the nation!  In all seriousness, Laura, I'm sorry you are going through this.  Take care and good luck in your recovery.  I pray you continue to have good results with Votrient.

PS--can you give us details about your tumor?  Size, location, how you found it?  Thanks

Stub

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