Post nephrectomy blues

twinthings said:

warm and fuzzy

Fox, you make me feel all warm and fuzzy inside.  This is a pretty cool place to hang out!

Cheers!

I too am someone who is more interested in reading the stories rather than writing them. I did find a great sense of relief after finding this site and communicating with members of this board. It was a similar journey for me. In March of this year I went in for an ultrasound because I had a urinary tract infection, which my doctor told me was uncommon for a man. The scan showed a growth on my right kidney. The urologist ordered a CT scan to get a better view of what we were dealing with and then a biopsy. The biopsy revealed that I had RCC on the right kidney. The doctors at this point were confident that surgery would cure the cancer. Surgery was scheduled for June 5. Everything went fine and I went home on the third day. I dealt with the gas in the abdomen for a couple days and the sore stomach muscles from the surgery that made it a challenge getting out of bed so I slept in a recliner for a week. Two week post op visit the surgeon said the path report was good, confirming what they had been telling me all along. Through all this I did have the roller coaster of thoughts going through my head. After about a month or so I went to my family doctor because I was feeling down but didn't understand why. I was given an anti depressant which once I was on them a few days I did feel a whole lot better. Today I am able to talk freely about it with family, friends and even some of my co workers. Dec.11 I had my first follow up scans and x rays. This past Monday I went to the urologist who told me the scans and tests came back all clear. He said I was lucky my cancer was found early. For the past month I have been getting by great without the use of anti depressants. I think (hopefully) having made it through the first follow up with good news will make the rest of them easier to deal with. In closing, while I might not be big on writing posts I will be hanging around and if I see someone in a situation like mine will gladly offer what I can to help.

Thanks to all who gave me help dealing with RCC.

Take care and best of luck to all of you.

-Dan

jhsu said:

Get use to it

RCC is gradually becoming part of my life over the years. I schedule my scans routinely twice a year. Yes, I think of it all the time, then I think of something else, it is like everything else, nothing else.

Jon

In January of 2011 I noticed blood in my urine . That will get your attention ! I had been experiencing some pain in my lower back for some time , but had not thought much about it since I've always worked hard and I figured it was just muscle pain .

I immediately made an appointment with my family doctor and about a week later I was in her office . I described my symptoms , including the lower back pain and she assured me that I most likely had a bladder infection . I was tested for an infection and several days later was informed by the nurse that I did not have one. My response to this news was a rather forcefully expressed " Oh CRAP !!!" She could not understand why I was not happy that I didn't have a bladder infection . I had to bring to her attention that the lack of a bladder infection just meant I had something else and it was probably gonna be worse than a bladder infection .

Back to the doctor . She said kidney stone . She was 99% positive . I was vastly relieved . I knew kidney stones are not fun but I was pretty sure passing a kidney stone would be  a lot more hilarious than the other thoughts which were running around in the back of my mind. She sent me home with pain meds and a screen to pee through to catch the stone . Sort of like panning for gold . No 49'er ever looked harder for a gold nugget than I looked for that kidney stone . Every time I felt the urge I would say a little prayer . " Please God , let it be the stone this time ." I wanted a kidney stone more than any little kid ever wanted a new bike .

Four weeks later and still no stone . The back pain was getting worse . There was still blood in my pee and occasionaly some little chunks of something I couldn't identify beyond the fact that they looked disgusting . But none of them looked like a stone . I called the doctor .

This time she sent me to a Urologist which is where I should have gone in the first place . Well , we live and learn . Sometimes the hard way .

The Urologist sent me to have a ct scan . That was on a Friday . His office called the following Monday .The voice of the girl on the phone sounded kind of nervous. " I'm sorry I have to tell you this on the phone but you have a large mass on your left kidney with lymph node involvement ." All I had wanted was a kidney stone . Instead I got hit with a boulder .

The Urologist had me meeting with a surgeon at Cleveland Clinic two days later . Two weeks after that my left kidney was history . A few weeks later I was back at the Clinic meeting with another  doctor who kindly explained to me just how bad my situation was . I felt pretty much like the guys in the Alamo must have felt like when Col. Travis drew the line in the sand . I could fight but my chances were not good . There was never any doubt that I would fight . Even a mouse will fight when it's backed into a corner . Also , if i didn't fight this for all I was worth, my wife would kick me through the window. I was so informed . " Yes dear "

I went on Sutent for six months with no good result . I had two tumors , one in my abdomin and one in my left lung and they were getting bigger all the time . Especially the one in my abdomin which seemed to be extra healthy . And extra painful . I ate oxycontin and oxycodone like they were candy .

After my time on Sutent I was given the chance to enter a trial of Nivolumab . I went for it and it was the second best thing I've ever done . The first best thing was marrying my wife . Ask her about it . I tell her all the time . And I mean it . Without her I wouldn't be here waisting your time .

Two months after starting Nivolumab all signs of cancer were completely gone .  So far all my scans have come back clear .

I will be getting another scan next week . I'll let you all know how it turns out .

Frank302 said:

I was born a ramblin' man

In January of 2011 I noticed blood in my urine . That will get your attention ! I had been experiencing some pain in my lower back for some time , but had not thought much about it since I've always worked hard and I figured it was just muscle pain .

I immediately made an appointment with my family doctor and about a week later I was in her office . I described my symptoms , including the lower back pain and she assured me that I most likely had a bladder infection . I was tested for an infection and several days later was informed by the nurse that I did not have one. My response to this news was a rather forcefully expressed " Oh CRAP !!!" She could not understand why I was not happy that I didn't have a bladder infection . I had to bring to her attention that the lack of a bladder infection just meant I had something else and it was probably gonna be worse than a bladder infection .

Back to the doctor . She said kidney stone . She was 99% positive . I was vastly relieved . I knew kidney stones are not fun but I was pretty sure passing a kidney stone would be  a lot more hilarious than the other thoughts which were running around in the back of my mind. She sent me home with pain meds and a screen to pee through to catch the stone . Sort of like panning for gold . No 49'er ever looked harder for a gold nugget than I looked for that kidney stone . Every time I felt the urge I would say a little prayer . " Please God , let it be the stone this time ." I wanted a kidney stone more than any little kid ever wanted a new bike .

Four weeks later and still no stone . The back pain was getting worse . There was still blood in my pee and occasionaly some little chunks of something I couldn't identify beyond the fact that they looked disgusting . But none of them looked like a stone . I called the doctor .

This time she sent me to a Urologist which is where I should have gone in the first place . Well , we live and learn . Sometimes the hard way .

The Urologist sent me to have a ct scan . That was on a Friday . His office called the following Monday .The voice of the girl on the phone sounded kind of nervous. " I'm sorry I have to tell you this on the phone but you have a large mass on your left kidney with lymph node involvement ." All I had wanted was a kidney stone . Instead I got hit with a boulder .

The Urologist had me meeting with a surgeon at Cleveland Clinic two days later . Two weeks after that my left kidney was history . A few weeks later I was back at the Clinic meeting with another  doctor who kindly explained to me just how bad my situation was . I felt pretty much like the guys in the Alamo must have felt like when Col. Travis drew the line in the sand . I could fight but my chances were not good . There was never any doubt that I would fight . Even a mouse will fight when it's backed into a corner . Also , if i didn't fight this for all I was worth, my wife would kick me through the window. I was so informed . " Yes dear "

I went on Sutent for six months with no good result . I had two tumors , one in my abdomin and one in my left lung and they were getting bigger all the time . Especially the one in my abdomin which seemed to be extra healthy . And extra painful . I ate oxycontin and oxycodone like they were candy .

After my time on Sutent I was given the chance to enter a trial of Nivolumab . I went for it and it was the second best thing I've ever done . The first best thing was marrying my wife . Ask her about it . I tell her all the time . And I mean it . Without her I wouldn't be here waisting your time .

Two months after starting Nivolumab all signs of cancer were completely gone .  So far all my scans have come back clear .

I will be getting another scan next week . I'll let you all know how it turns out .

I had such a similar starting experience to yours. My first blood in the urine occured the night of my birthday in December of 2011. I had been out with friends and drank heavily (it was my 50th birthday, after all!). It was like 3-4am and I was drunk and sick (I hadn't gotten sick from drinking in many years) and when I peed it was red. Wow! I wondered what that could be. The red velvet martini? The korean soju? The mixture of all the crap I drank that night?

The next morning it was gone and I was peeing normally. I mentioned it to my uncle and he didn't know what it could. I made an appointment with my primary care doctor about 1 week later, but he was busy so I saw the PA. The PA did a urine test, and said my urine was normal. No blood. Nobody knew what could cause that and it had gone away. It didn't happen again until just before I left for a business trip 11 months later in November 2012. First the urine was just kind pink/brown, but then it turned like Koolaid.

I went to an urgent care in Santa Clara, Ca where I was on business. I had no other symptoms. She was thinking UTI also, but I had no fever or elevated white count, so that didn't make sense. She was thinking STD then and started really kind of grilling me (I think the gay thing played a part in her attitude there, you know how we are....) Anyways, she put me on an antibiotic and sent me home. The next day I got really awful pain in my side. Both me and my uncle were thinking kidney stones at that point. I'd had them before, and it felt the same. It got so bad I couldn't drive and I had to have someone drive me to the ER. That's when the ER doc ordered the CT "just in case". I'm so glad he didn't listen to my diagnosis, because while I was in the ER, I passed a couple of blood clots (that's what was hurting) and then the bleeding stopped and again I never had bleeding again after that. The CT showed a 7 cm mass in my right kidney.

You know I'm really curious when I had kidney stones a few years ago, if that mass was there back then and it was missed. I'd like to pull a copy of the report and see. Ah, what good would it do.

I can really relate to your experience with the docs thinking UTI, then kidney stones and the passing of clots, etc.

Since this is a rare thing, doctors don't think about it. They operate on what's the most likely thing. However, they are supposed to not stop investigating until they find a root cause. My bleeding back in December of 2011 should have been investigated by a urologist, but nobody thought to send me there because the bleeding was gone and they didn't seem to know blood like that could come and go. Now I know it can.

Glad everything has cleared up for you and I sure hope it stays that way.

Todd

donna_lee said:

Learning about the "New Normal"

Before I digress, you guys have a distinct advantage in being able to observe the coloful rainbow you expel...and if you miss the bowl, you spouse will darn well tell you something is wrong with what she cleaned up off the floor.

In my case, a yearly exam with uninalysis, showed hematuria.  But I wasn't told about it until the PC called me in after an ultrasound for possible gall stones, and said I also had a mass in my right kidney and one or two in the left side of my liver.  You can read the details on my "home page".  Seven and a half years later, two recurences, and lots ot tests, and much sould searching, I've begun adjusting to what it's like, not always easily.

First, I think your age at the time of diagnosis has a lot to do with how you sort things or prioritized your life.  I know my reaction would have been different at 20 or 50. At 63, my kids were on their own; my husband and I had been together for years and had a successful business; but I was not ready to give up.  As I whispered to my granddaughter born 6 weeks after "the surgery, " I want to be around for your wedding, and you can't get married until you're 50". (Exageration!!)  

In the first couple of years, I was afraid to plan anything beyond the next test.  The longer I survived, the easier it became to plan for furture activities.  So let me share what we did from Dec. 26th to Jan 4th.  With a 50th Anniversary coming up this summer, we wanted to have the kids and grands all together with us.  Our location on the west coast, logistics, kids school schedules, warmer weather, etc. pulled us all together in a beach house in San Diego for the time. Of course we wore ourselves out walking...SD Wild Animal Park, Zoo, Sea World, shopping at Saturday Mkt., shopping in Julian, shopping at an outlet mall, eating-eating-and did I say eating.  We relaxed in the sun, watched dolphin swim past, and individually or collectively spent time visiting and playing.  Some of the greatest joy was from watching the grandkids interact and for our daughter and D-I-L getting time to visit after young ones went to bed.  And remember that new baby from 2006?  She whipped my butt playing Uno and we all laughed about it.

This becomes part of the new normal.  Trying to live the life you would have lived anyway, at 100%, while you are in that moment.  It doesn't mean I'm not anxious a bit about the lab tests (CBC was OK; don't have the CMP, yet) and whether I'll be allowed to have a CT next week or if it will be skipped, again.

And Fox, you have a way of making us dig deep and share the things that make this board important.  The physical side of cancer seems small when you look at the emotional toll and terror it creates.  I think I've come out the other side a better person.  More tolerant of most things, but not willing waste my valuable time on frivolous fools who waste my time.

Let's hope 2014 brings Good Wished to all.

Donna

Donna,

Thank you for writing that.  The aspect of planning has been hard for me personally and professionally.  I am younger than many people on the board, with the RCC diagnosis at 48; I recently turned 50.  I am not retired, and can not retire yet.  I have a 11 yo daughter that requires support -- both financial and emotional.  I need to make sure she has the money to go through college....I have to pay for a Bat Mitzvah in about 15 months.  And yet, I am scared to think more that three months into the future at any given time.  At the moment, my horizon is one week....though I scheduled a meeting for after my scans....that is optimism, I guess. 

About this time, two years ago, I was planning a glorious vacation....a month long road trip driving from DC to the Rockies....We were going to leave on June 19th, after school let out.  On May 1, 2012, my primary concern should have been Bryce Harper's home debut with the Nationals (Nats).  Instead, on that day, they told me of the mass on the kidney.  Priorities shifted.  But, my Dr (urologist) told me that, after the surgery I will be "cured".  Stage 1 RCC is cured by removing the tumor.  You do follow up scans, but those are a formality.  On the 19th of June, instead of leaving on the road trip, I had a kidney removed.  I had planned to miss 3 weeks of work.  The Dr. said I would be 100% by 6 weeks, so we booked a trip to Oregon for late August.  But, nothing went smothly, including the wound getting infected and opening at 4 weeks.  I felt worse at six weeks than I did at two weeks. I returned to work in Mid August.  I could not move, and ended up cancling the trip (and eating the plane tickets). 

But, at least I did not have cancer.  I had my 6 month scans...they were done at NIH, as I was participating in a study on familial kidney cancer (my father and his father had it).  I was sure that the scans would show nothing.  I had the next several months planned, I was really feeling good...90+% recovered.  Then at about 1:00 PM on Dec 19, six months to the hour of the nephrectomy, they told me that everything is not good...there is a mass in my lung, which was removed 6 weeks later (after confirming it was cancer).  My plans for the future were on hold.

After than, I would plan only to the next scans.  I am now one year out, and plan only to the next scans.  So, I know what I am doing until Thurs.  And I do have a meeting early the week of the 20th. 

I am not comfortable planning further.  Professionally, this has been a problem...I am now planning work a little further.

todd121 said:

This Subject

I've read all these shares, and I'm humbled to be among you all. I couldn't respond individually. Words were lacking.

Thanks for posting your experiences.

Todd

What an incredibly moving and profound thread I found this one to be!  I have read amazing thoughts and please forgive me, I know its old but nothing in it is and I was afraid of lossing the thread if I didn't post something... and yes okay, maybe hoping to revive it with new contributions?  I should be the first to volunteer if Im asking but I need to get my thoughts and feelings together before embarking on it.

Wow! How many amazing human beings, I am humbled.