Worried - Kidney Removal. : So I've been told... - Kidney Disease

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Worried - Kidney Removal.

picman2007 profile image
7 Replies

So I've been told I have two tumours on my kidney and it will have to be removed, a biopsy wasn't done to determine this just the size of them. I've had a DMSA scan to see if my other kidney is working okay but m worried as to don't know what to expect with the removal. How long is the operation, what's the procedure afterwards, what's the recovery time etc, if anyone has experience of this procedure can you please let me know what to expect. Thanks.

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Dixidude39 profile image
Dixidude39

There are two kinds of kidney cancer. The most common is RCC (renal cell carcinoma). It applies to about 90%+ of patients, and it sounds like the type you may have. I had the lesser diagnosis of TCC (Transitional Cell Carcinoma). I had my bladder removed in Feb. 2015 due to cancer, a specific kind of cancer that can lead to TCC of the ureter/kidney. A year after removal of my bladder, M D Anderson Cancer Center (Houston, TX) discovered the TCC in my right ureter and kidney. Urologists at Johns Hopkins affirmed the diagnosis and recommended treatment, which was removal of the R ureter and kidney. Chemo or radiation cannot be used to treat TCC. Total surgical removal (July 2016) was the only remedy. Caught early, my understanding is that patients with RCC can have targeted surgery (and radiation ??) to remove the tumor(s), allowing the kidney to continue working. Ask your surgeon which type of cancer you have, and if he/she says RCC, ask why the ENTIRE kidney must be removed. Finally ... Surgery to remove my bladder took 7-8 hours. Surgery to remove the ureter and corresponding kidney took 2-1/2 hours. Recovery from the kidney surgery was twice as fast as for my bladder. Restrictions on lifting, and driving (by myself) restricted for 2 weeks (just as a precaution). I don't recall feeling any pain. My 18-month follow-up is Dec. 4. I know that my risk for developing TCC in my other kidney is higher than average. If it must come out (now or in the future), hemodialysis will be required. I'm 78, and though dialysis isn't a picnic, my current thinking is I probably won't seek a transplant, which has its own challenges. Both my bladder and kidney surgeries were "open surgeries." Robotic surgery is another option some surgeons prefer.

picman2007 profile image
picman2007 in reply toDixidude39

Thanks, I have an appointment tomorrow to discuss the results of the DMSA scan which was done two days ago, guess i'll find out more then.

newbie1956 profile image
newbie1956 in reply topicman2007

You will be in our thoughts for the best outcome.

Zazzel profile image
Zazzel

I'll be thinking about you today and sending positive thoughts your way.

Surreyhunni profile image
Surreyhunni

Hi Picman

I too have recently been diagnosed with kidney cancer - I have a very large tumour 7.8cms and need to have my kidney removed. However following a ablation for my heart in August, I sustained a phrenic nerve injury and now my right lung/diaphragm is paralysed and I have to have tests to see if I'm fit enough to have it removed or not.

As you can imagine a very stressful time, not least because the tests are booked for Monday and I have an upper respiratory infection right now :-( .... I am provisionally booked for the removal on 29th Nov by keyhole.

I shall be interested to read any further posts you make and wish you all the best with your forthcoming procedure.

Scary times isn't it?

Best wishes x

picman2007 profile image
picman2007 in reply toSurreyhunni

Yes very scary are you having the heart stress test? I had to have a DMSA scan which showed my other kidney wasn't up to much. I find out on Monday which op i'll be having out of a choice of three, keyhole front or back or open surgery through my side. Can I ask did you have the ablation due to af or other arrhythmia ? Best of luck for the Monday test. x

Surreyhunni profile image
Surreyhunni in reply topicman2007

I had a perfusion mri which is a heart stress test before my ablation and fortunately it shows no other problems apart from the electrical problem of af. (so no other arrhythmia that i know of) Mild heart failure due to high blood pressure but the cardiologist says it will not be a problem for the operation.

The tests I'm having on Monday is CPEX which I believe is also a heart stress test along with how the lung copes with exercise. I'm very worried that my lungs will not be up to exercise because of the infection I now have and also because of the right side not working.

The professor in charge has warned that if the risks too high then he will not be able to remove the kidney. I also have two lymph nodes in the stomach that lit up on the ct scan, which he says if they are cancer he will treat with chemo but firstly he needs to know if he can remove the kidney.

I said but if you don't remove the kidney (as its already so large) then I will die .... his reply .... you may die sooner if the risk is too high ie not make it through an operation.

So as you can imagine, I am desperate that I pass the tests on Monday!

The irony is that if I hadn't had the ablation and the phrenic nerve injury causing the breathing problems then they would never had found the tumour but its the phrenic nerve injury may be the reason I cannot have the kidney removed.

I never ever thought I would pray to have such an operation.

May I asked where you are based picman? Please let me know how things are going for you. xx

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