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Brand new to group - today's diagnosis

HockeyJoc3's picture
HockeyJoc3
Posts: 4
Joined: Apr 2018

Hey everyone - a little life curveball thrown my way today with the (official) diagnosis - although I've known in my mind for a little while now.  Still strange to get the official word.  I became super sick last June following a business trip to Mexico and ended up going into completely-unrelated kidney failure.  During that stay in the hospital to get my kidneys booted back up they did an ultrasound on my kidneys and just happened to find a small mass.  They told me they wanted to do a scan with contrast as soon as my kidneys were well enough for the contrast.  Finally did that scan last month.  I know I shouldn't have waited even that long but full-time work, travel for work, and full-time grad-school kept my attention diverted until a follow-up appointment with my Nephrologist.  She gave me direct orders to do the scan, and I really like her so I promised.  The scan showed the mass had grown slightly - referred to a Urologist, Biopsy last week - and here we are.  Clear Cell Renal Cell Carcinoma - Fuhrman Nuclear Grade 2.  I'm not familiar with all the lingo, stages, and scales yet - I'm sure that will come with time and more conversation with the doctor.  Waiting to chat with him as we speak for next steps. The mass is fully encapsulated in the kidney and, from what I was told, the scan showed everything around the kidney to be clear. A nephrectomy is no doubt in my immediate future.  I believe we caught it early enough - a very happy accident from last summer's hospital stay. I'm the most optimistic person in the world and am just considering this as something I need to get through so I can get on with things! I'm a busy guy, after all!  Knowing I have full support from family, work, and school also helps tremendously. 

I'm looking forward to hearing your stories and learning more about this journey we all seem to be on together.  

Kevin

icemantoo's picture
icemantoo
Posts: 3195
Joined: Jan 2010

Hockey,

 

 

Take it easy after you get nephed. If the doctor says you can get back to work in so many weeks, ask him if he has been nephed. Heres to a boring and unevenful surgery.

 

icemantoo

ps- No jumping up and down when your favorite team scores a goal.

HockeyJoc3's picture
HockeyJoc3
Posts: 4
Joined: Apr 2018

Thanks for the note - I appreciate it!  I guess I'll have to quickly learn all the jargon.  I haven't heard of "being nephed" but that's definitely an easy one to figure out.  Almost sounds like being neutered or something - ha!  Thanks for the surgery well-wishes (now scheduled for May 24th).   As for hockey - I played for 17 years (right defenseman), but grad school has me so busy I don't think I've followed hockey (like I used to) in about three years now.  What do they think about "nephed" guys playing hockey??  :)

Stay well! - Kevin

Brock1969
Posts: 80
Joined: Jan 2018

You mentioned school so I am assuming you are a teacher? I am as well. It's a pretty stressful job so, while I had heard of the old "three weeks" and back to work garbage, I had them sign a note for 5. I am glad I did. Went back a few days ago and coach golf after school...have had super energy (though I hit the wall at around 7pm). Take the extra time assuming you have the accumulated sick days. Good luck with everything

HockeyJoc3's picture
HockeyJoc3
Posts: 4
Joined: Apr 2018

Hi Brock - thanks for the note.  Glad to hear you're feeling well and getting back to the things you enjoy!  I'm actually not a teacher - I'm in grad school.  Decided to go back for my Ph.D. and am so glad my professors are being great about everything.  They've offered workarounds like taking incompletes if I need to so I can finish after taking care of this - or - even just working with them directly on an independent study basis into the summer so I can just keep going.  I think I have the time I need accumulated at work.  I work from home when I'm not traveling.  I won't be traveling for a while - so it will be very easy to stay low impact and ease into sitting at my desk to get things done.  Looking forward to keeping up with you and seeing how you're doing!   - Kevin

icemantoo's picture
icemantoo
Posts: 3195
Joined: Jan 2010

I had a slip and fall on the ice (not hockey) a few years bafter being nephed (not hockey). At the ER they said because I had no left kidney and I fell on my left side they did not have to  do xrays for kidney damage that they would otherwise do. What a bonus.

 

 

icemantoo

Tapman63's picture
Tapman63
Posts: 135
Joined: Dec 2017

...altnough I'm sorry you have to be here.  It's a great group that helped me tremendously before and after my surgery (radical neph of left kidney 7 weeks ago).  I think most here will agree the waiting and anxiety is the worst part.  A week or so after surgery can be interesting, but not nearly as bad as you will have worked up in your mind.  After that, you will start feeling better every day.  Just make sure you listen to your body - when it says stop and rest, DO IT!  Right now, I'm good for about a half day at work and I hit the wall at 3:00 - 4:00 each day.  After a short nap, I'm usually good to go again.  I'm glad that all indiciations show no spread - that's big!

Best wishes for a non-eventful surgery and a quick recovery.  If you have any questions or anxiety, don't hesitate to post here.  The folks on this board kept me sane.

Jim

Manufred's picture
Manufred
Posts: 225
Joined: May 2017

Welcome and let me give you the same advice I just gave someone else.

I was diagnosed with a 6.5cm tumour on my left kidney in June 2012, and had the kidney taken out in August 2012.   It is a big operation but if you are in good condition there is no reason to think you'll have any problems getting better in the short term.  But.....

We thought having a radical nephrectomy would be the end of it, but be prepared for the eventuality of it having spread already or spreading during surgery.  They wont know for sure until much later, so you need follow-up scans (6 monthly is good).  I was found to have mRCC 30 months later, with a maximum five year survival prediction.

Luckily I was accepted into a clinical trial and am now free from tumours (as far as I, my oncologist and the radiologist can possibly know).  My entire story is on my profile page.

Kidney cancer is daunting but no longer necessarily fatal.  Keep positive and best wishes to both of you as you travel down this journey.

 

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Glad your back to get the scans you needed. Look over recent posts there are a lot of newbies on board. Ask any questions that will pop up, you'll get an answer. Update your bio information as you go through this journey. Try and relax its hard but you'll be ok after the surgery. Sending positive thoughts.

Steph85's picture
Steph85
Posts: 157
Joined: Feb 2018

I'm sorry you had to join the club. My mass was found incidentally as well. I thought I had gallstones and no, had cancer instead! Remember after your surgery to take your time healing.  Your recovery is whats most important,  life can waite. I hope someone will be there to help you recover. Take care, and oh... I'm a sharks fan! Go sharks!

Be well, 

Stephanie

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Hi. I had the exact same thing and same grading. You will be ok. It is a tough surgery, but you got all the nonsense out of the way already. All of the unanswered questions, appointments, etc. Now on to surgery and healing. Best thing is to get it out and move on with your life. You will absolutely do this seeing as how they caught it early. How lucky we are/were. All the best to you!!!

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

Hi Kevin,

I totally get where you're coming from. I'm a single mom in grad school working full time and interning. I had my nephrectomy March 29th and I'm two weeks post op tomorrow! My surgery went really well, I had a laparoscopic hand assist and I won't lie, the CO2 gas they pump in you was the worst pain of my life-use heat! But the incisions and the rest of it weren't so bad. I feel really good, not needed any naps or anything this week so far. I am going to be good and not return to work until April 30th, but I'm working on school work and internship hours from home. I only needed the pain meds for 3 days after I got home and then I switched to Tylenol. I think it's really helped to have other things to focus on (like school) for my recovery. I think it would have been hard to feel so idle at home otherwise.  Sending good thoughts for a boring, uneventful surgery and quick recovery! 

Jenn

stub1969's picture
stub1969
Posts: 776
Joined: Jul 2016

I'm glad you found us.  You've already gotten some great responses to your post.  Don't worry about the lingo...you'll become educated pretty quickly.  You mention that a nephrectomy is in your future--did you doctor talk to you about the location of your mass?  Size?  possibly of doing a partial?  If not, it sounds like you need to see an expert.  This is a time where you want to be confident in your surgeon.  

Good luck and keep us updated.

Stub

rjhillcbytwp
Posts: 11
Joined: Oct 2015

Hi Kevin,

Sorry to read that your application to this club was accepted and approved, but I'm glad you're here.  You'll have lots of decisions to make and things to do over the next several months, I recommend that you do YOU.  If it makes you happy, do it.

That said, I never played hockey until I decided I'd do it. I was turning 50, and had already lost my left kidney, and parts of the right one too. I have two lungs full of kidney cancer mets.  I had wanted to play since the 1980 Miracle on Ice, it just always took a back seat to work, kids, volunteer committments, etc.  I figured that if I didn't find my way to the ice at 50, I never would.  So I found some ill-fitting hand-me-down gear, and went.  Now a solid D-Leaguer.  As soon as I can get back some lung capacity, I might be able to skate hard enough to get a little stronger, and maybe a bit better.  My Oncologist supported me, and encouraged me.  We thought the rink would be the best place to exercise due to my lung issues.  He was right.  He got the puck when I scored my second goal (forgive my amateur thinking, I kept the first for myself!).  His only advice?  Protect my remaining kidney, as I do have a need for it, and don't break my hip. The other folks in the league were largely respectful of my condition, which was a big relief.

If you find that you take your time and set realistic expectations, you can do whatever makes you happy.  Maybe a bit slower than you would like, but it is possible.

-Bob

steelr66's picture
steelr66
Posts: 23
Joined: Mar 2018

Sorry if that offends, i'm a life long Pens fan and this is the best time of year! Hockey is king! I just had my surgery on April 3rd and it went well, all things considered. It was supposoed to be a partial, but they ended up taking the whole kidney. Everyone here is amazing...just amazing. We will all be with you on your journey!

rjhillcbytwp
Posts: 11
Joined: Oct 2015

Indeed!  Let's GO PENS!

jazzgirl's picture
jazzgirl
Posts: 129
Joined: Nov 2017

I'm also wondering and hoping a partial nephrectomy may be possible.  And I will echo the others - take seriously the advice to take it easy after surgery.  I was fortunate to be able to take the whole six weeks my surgeon told me to take.  And I had fabulous support during that time.  You and others have a lot more on their plate, but it sounds like those areas can accommodate to your needs for a while - I hope.  Know that we are all behind you and following your progress.  Take care -

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