New. Waiting. Worried

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  • kiwi68
    kiwi68 Member Posts: 110
    edited December 2017 #22
    Tapman63 said:

    Thanks!

    My left side used to always hurt...a dull ache mainly.  During my normal yearly exams it was noted that my kidney function looked to be decreasing, so I was referred to a Nephrologist.  Mucho blood work - levels have gotten much better, but the ultrasound showed the mass.  Blood work showed a vitamin D deficiency, so I'm on suppliments for that.  I was also on a GERD medication that could affect the kidneys, so i'm on a different one (that's not working so well, btw).  As soon as I started the suppliment an quit the meds, that particular pain went away.  I still feel things on my left side...there's still a little pain...but it's not hard to get out of bed anymore.  Waiting for the CT scan to be scheduled.  Now every ache and pain I've had (like one under my left shoulder blade when I'm sleeping on that side) makes me wonder if there's more of the big C out there.

    As an aside...I've had microscopic blood in my urine since I was in my early 20's.  I'm now 54.  In my 20's I had a bladder xray and nothing showed.  Doctor said some people "just have that"...and that's what I took to be true.  I can't imagine I've had cancer for 30 plus years.  I do have a very little hope that maybe it's some kind of scar tissue on my kidney instead of cancer.  I know there's only like a 20% or less chance of that...but I'm hoping.  

    Hi, welcome

    As a small mass on your kidneys, it is unlikely to be causing you any pain, but you never know.   The thing about kidney tumours is that they can usually grow very large before you are symptomatic in any way.  At under 4cm it is unlikely that it is causing any of your syptoms and that this is a serendipitous or incidental finding.  Meaning they are looking for 'stuff' and find something.   Lots of us present for back ache, side ache, womens problems and get a scan - often an ultrasoud - that idintifies a mass - that is usually followed up by a CAT scan with contrast.   You might see a reference to KUB on your scans that stands for Kidney, Urinary Tract and Bowels, they are looking at those areas.  IceMantoo is correct in that Kidney cancer usually is a primary that spreads not the other way around. 

    Back to your scan, your CAT scan will be done with and without contrat most likely so they can see what shows up with the contrast, cysts (which 50% of us have) have thin walls and are fluid filled and empty inside, tumours are more complex. 

    If it is a cyst there will be some follow up but unlikley surgery.  If it is tumour like, a referral to a urologist and most likely surgical removal.   The guys on the board here will answer your questions about surgeons and options.   At under 4cm most tumours are removed and the surgery is considered 'curative'.   Of course pathology will look at what kind of tunour it is, if there are clear margins and you will be advised if you need further scans to ensure no spread of the disease. 

    At under 4cm you may be a candidae for nephron sparing surgery (partial nephrectomy) where only part of your kidney is removed, this is good, kidney left to ensure good kidney function.  Sometimes as litle as 10% is removed.  You can function very happily with one kidney.  Losing only a part of one makes almost no difference to your life assuming you had nornal renal function before.   It does depend on the location of the tumour and the surgeon as to what type of surgery you can have.   There are also radical nephrectomy - whole kidney removed, and the surgeries can be done 'open' one large incicision or 'laproscopically' several (4 - 5) small inicisions of varying sizes from 5mm to 5cm.  A surgery can be done by hand or by robot.  A name you will see is Da Vinci with regard to the robot. 

    Recovery is 3 weeks partial - 6 weeks open from surgery before you will be up and about able to do a normal day depending if it is laproscopic or open. Although you will be up and waling within 24 hours usually.  Plenty of time to learn all about that. Everyone has a different story of recovery from surgery. 

     

    I had a partial nephrectomy laproscopically on 9th November, today Christmas Day I am 100% my old self.  Completely and utterly forgot I have ever had the operation.  I recoverd well and had no complications at all and to top it off as AnnisaP posted, I was one that had a rare kind of tumour that mimicked a renal cell carcinoma, so I have no follow up scans to look forward to.  So it is possible, maybe a 10 - 20% chance. 

    Please try to stop worrying, everything will happen in good time.  The guys here on the board are hugely supporting and helpful and hopefully your medical team will be too. 

     

     

  • Tapman63
    Tapman63 Member Posts: 137
    edited January 2018 #23
    CT Tomorrow

    Okay - so the rubber is about to hit the road.  CT Scan tomorrow.  I've taken my first dose of what tastes like sewer in a tube (and get to again tonight and twice tomorrow.  Good times).  I had really calmed down some - I have some out of town friends here and that's helped keep my mind off of things...but with the scan knocking on the door, the obsession has returned.   I keep telling myself "3.3 cm...it's small...prognosis should be okay for no spreading..." but I can't get that spreading fear out of my head.  I guess that's normal.  I'm so glad this board is here so I can vent my fears to people that REALLY get it and understand.  Thanks!

     

  • Retcenturion
    Retcenturion Member Posts: 240
    You've got it

    The scan  prep is a joy. The test itself is nothing. After the test take a breath you have done all you can control. If it comes back you need some type of procedure you're given a game plan and that's what you concentrate on. I know how hard it is to keep your mind from running down every scenario that can bring you down. Try and focus on the positives. Sending positive thoughts for you and your family tomorrow.

     

  • Brock1969
    Brock1969 Member Posts: 80
    edited January 2018 #25
    icemantoo said:

    Welcome

    Jim,

     

    Sorry you had to join. All of us felt like sh-- when we herd the diagnosis. Harder that you had a famoly history. For what its worth at 2.2cm it is very unlikely that the prognosis is not just good, but excellent. The anxiety will wear off. We have all been there and done that. That was me 15 1/2 years ago.

     

    Icemantoo

    Icemantoo...

    I think it's absolutely wonderful that after all these years you keep up with this board and provide comfort to those who need it. That's awesome 

     

    -Brock