renal cell carcinoma

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renal cell carcinoma

by medical12 on Mon Jan 05, 2009 12:00 AM

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I read with interest all the messages posted for "rcc".  I am 7 weeks post op and I wished I would have found this prior to surgery.  My renal mass was discovered during an emergency ruptured appendectomy.  I was in hospital for that for 7 days and saw the urologist 3 weeks after.  He wanted to operate immediately!  I was still recovering from the previous surgery and dealing with the findings of "cancer" and went through all the phases of anger, denial and acceptance.  We agreed to wait 6 months and do another CT and yes it was metastizing (only 2.64cm).  Scheduled for surgery in 6 weeks.  Surgery was actually November 13/08; epidural in for 4 days; 22 staples, released from hospital on the 6th day. 

I knew recovery would be difficult but could NOT find anything to refer to.  The discharge instructions were:  no lifting over 10lbs, no bending, no driving, no grocery shopping, no stretching for 6 weeks;  walking was recommended.  Well!  Just getting in and out of bed took half a day!!  They gave me 15 pain killers which lasted 3 days and I saw my GP who gave me more to get through the Xmas season.  Usually I can "plough" my way through things and work with the pain and keep on going.  This just stopped me cold in my tracks.  When I was doing something I got hit with an incredible fatigue and just hit a brick wall.  I see my surgeon in a week and we will decide on returning to work.  I still have a lot of discomfort in my side ( I swear he broke all my ribs!)  I am very concerned about being able to sit at my desk all day in a very highly stressed job.  I find I have to change positions every 30 minutes or so, or I get so uncomfortable. 

Thanks everyone for these messages.  I didn't feel so alone and realized what I was going through was something everyone else was experiencing!  Happy New Year and good health! 

 

 

 

 

RE: renal cell carcinoma

by JulieUK on Sun Jan 11, 2009 12:00 AM

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Hi, I have to say your post-op instructions sound very similar to my husband's. Fortunately, he didn't have the kind of experience you had, and was indeed able to walk (walked out of the hospital three days after the op, which had landed him in ICU) - BUT, he hadn't just had previous surgery!

As for painkillers, he was basically on the maximum paracetomol dose (which I think is 2 x 500 mg four times a day), and that seemed to be enough to damp things down sufficiently. But I can't see why someone couldn't be on more powerful stuff, and it must certainly be worth your while asking? Constant pain is not going to help you heal.

My husband was also told that, although he was 'fit for work' ie, deskwork at home mostly, thanks to an excellent employer for which he was very grateful, the surgeon warned him that 'an hour at your desk and you'll feel exhausted like you've put in a full day' so do bear that in mind. Stress, too, is hardly a good idea - would some kind of tranquillisers help? I'm personally a great believer in using them as 'temporary bridges', though I know that men typically don't like to take them (or, indeed painkillers!)  :)

Finally, I just wanted to say that, since you don't mention any mets (tumours in distant organs), does that mean they caught the primary cancer on the kidney before it had 'gone out to play'? I do, do hope so, and if so, then I think there are good good (indeed, fantastic!) grounds for being incredibly grateful to that ruptured appendix! A quick browse on the boards here (are you checking 'kidney cancer' too, here - for some reason this type of cancer splits across both boards, with a lot of overlap and cross posting) will show that late DX is all, all too common, because there are so few, if any, discernible symptoms at earlier stages - or, indeed, even at last stages! Around 30-40% of all RCC DX is, so I think I read, classed as 'incidental DX' - meaning the cancer was found when the docs were treating/investigating something else completly, such as your appendix. Someone here went to the doc with a 'tennis shoulder' that turned out to be a bone met, someone else had a bad ankle (bone met), and my own husband just had a persistant cough (lung mets) and had not realised his night sweats were cancer (and didn't tell his GP). Oh, and he had a visual migraine in one eye, as well - jagged lines every now and then. It was a brain met.

However, EVEN IF, the docs have told you it's pre-metastatic the cancer, and that 'they've got it all' PLEASE insist on a full torso CT scan (and, indeally, a brain scan as well, especially if you have ANY possible symptoms, such as visual disturbances, trembling/numbness in the limbs, or new headaches, or pressure behind the eyes, or any mental confusion). Some docs are very pro-active and concerned, some are not. Some surgeons like to tell you that 'they've got it all out' and be overconfident about your conditoin. ONLY A CT SCAN will show if you have any mets anywhere else, eg lungs. You MUST insist on one, whatever the docs say. It's your life and, bottom line, in the end, only you and those who love you care about you - your doctor may not. (And your employer certainly won't! So NEVER make your job take precedence over your health and life!)

There is a theory now that cancer starts to metastasise much earlier than originally thought, with 'micro-mets' lurking in the blood stream, etc, ready to 'nest' in nice warm, unwary organs!

Also, as you know, RCC is a come-back king, and there are people DX and treated at pre-met stage, who still go on to develop - sometimes years and years later - metastatic cancer, either in places like the lungs, or in the remaining kidney, or in the renal bed of the removed one. So, for the rest of your life, you MUST remain on 'cancer alert' and have at least one CT scan per year. The good thing is that this will catch any recurrance earlier than symptoms showing, and it will also spot any OTHER type of cancer in the torso as well (some exceptions, eg bowel, testicular, etc)

All the very, very best to you - if they HAVE caught this pre-metastatic, you are a very, very lucky guy. (And even if they haven't, or it arrives later, this is, after all, the best time ever to have RCC, with the new drugs and therapies around.)

Best, Julie.

 

RE: renal cell carcinoma

by bizzymissy on Mon Jan 12, 2009 12:00 AM

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Dear Medical12,

My husband was diagnosed with RCC in 4/08.  His tumor was the size of a newborn baby, and he had surgery in early May.  47 staples, a removed kidney, slpeen and reconstructed diaphragm later, he began the road to recovery.  He currently takes sutent and is doing well.  If you would like to share with someone who personally understands what you are experiencing, feel free to email him.  Just let me know.

 

Missy

RE: renal cell carcinoma

by medical12 on Wed Jan 14, 2009 12:00 AM

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On 1/12/2009 bizzymissy wrote:

Dear Medical12,

My husband was diagnosed with RCC in 4/08.  His tumor was the size of a newborn baby, and he had surgery in early May.  47 staples, a removed kidney, slpeen and reconstructed diaphragm later, he began the road to recovery.  He currently takes sutent and is doing well.  If you would like to share with someone who personally understands what you are experiencing, feel free to email him.  Just let me know.

 

Missy


Hi Missy;

Thank you for your email response!  I was shocked to see what the size of this tumor can do! I just saw my surgeon the other day and we reviewed my case again.  What I could not understand that my tumor was only 2.63centimeters and he was adament about removing it right now!  I really thought he was in this for the $, but the more and more I have read, I am understanding that this can spread rapidly and into other organs. 

Yes it would be great to share with someone about what one goes through plus the recovery.  I am going back to work in 2 weeks and I am trying desperately to strenghten up, and keep the pain and discomfort at an acceptable level. 

How do you "hit the pavement running" after this?

Thanks

 

 

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