Hi Dan, I’m sorry you’re having to go through this anxious time. I’ve been through something similar with a very positive outcome. I had no symptoms but an ultrasound showed a 14cm mass on my right kidney. That was back in March. I had a CT scan 2 weeks later. The good news was that it hadn’t spread but the surgeon said that my kidney had to be removed along with the mass and, because of its size he was 90% certain it was cancer. He also said that because it was so big he didn’t think he would be able to do keyhole surgery. 

My operation was May 11th. I woke up after very alert and they told me they had done it by keyhole surgery. It was a seven hour operation. Catheter and drain came out 24 hours later and three days after the op I came home. First two weeks I was very tired and often n some discomfort but nothing ordinary pain killers couldn’t sort out. 2 weeks after the op I got the news that is was an oncocytoma (I may have spelt that wrong) a benign tumour. Completely euphoric, that was the first time I cried. I was back at work full time June 25th. I’ve just today got back from a weekend in Crete. I have friends there and no one could believe I had had a nephrectomy because I look very well .

i sincerely hope things work out for you as well or better than they have for me  I think the waiting is by far the worst bit, the mind plays terrible games if you let it . I’ve been meditating daily for over 18 months and it helped me a lot as well as having terrific support from husband and family. I hope you can find a way of distracting yourself if only for short periods of time. And do ask lots of questions when you see the Dr & surgeon. I wrote my questions down and took my husband to all the appointments because I knew I wouldn’t remember everything. We have a tendency to only remember the bad bits!

keep me posted and please ask any questions relating to the surgery and recovery . I’ve stsyed on this site in the hope that my experience can encourage other people. It’s not always bad news  

love, Caroline  

Hi Guys, 

First and foremost thank you very much for your moral support!  

It's great to have a forum like this :)

Today was the day where I finally got to see my consultant in Ireland. Wow what a difference to the urologist I saw in Germany.  He took all the time and explained everything in detail in a calm / friendly manner. 

After looking at my MRI and CT scans he thinks that I might have angiomyolipoma. However he will organise a conference with other colleagues and radiologists to have another look at my images. If they all come to the same conclusion then the mass will only be monitored. However if it grows then he might have to perform an embolisation i. e. cutting off the blood supply of the tumor. 

If these specialists have any doubts then they will take a biopsy for re-assurance. However if it is cancerous they will have to remove the whole kidney as the tumour is right in the centre of it. This will be done by either robotic or normal keyhole surgery  (happy days :)).

I was also told that the tumour is small in size and therefore I don't need immediate surgery  (within the next two months would be safe enough ).

I feel much better but can't fully relax yet until I will be given the results.

I guess the wait continues so I have to be patient. 

Thanks again everyone! I hope that your health / treatment is going well!

I will keep you posted. 

Best wishes, 

Dan 

Hi Guys, 

First and foremost thank you very much for your moral support!  

It's great to have a forum like this :)

Today was the day where I finally got to see my consultant in Ireland. Wow what a difference to the urologist I saw in Germany.  He took all the time and explained everything in detail in a calm / friendly manner. 

After looking at my MRI and CT scans he thinks that I might have angiomyolipoma. However he will organise a conference with other colleagues and radiologists to have another look at my images. If they all come to the same conclusion then the mass will only be monitored. However if it grows then he might have to perform an embolisation i. e. cutting off the blood supply of the tumor. 

If these specialists have any doubts then they will take a biopsy for re-assurance. However if it is cancerous they will have to remove the whole kidney as the tumour is right in the centre of it. This will be done by either robotic or normal keyhole surgery  (happy days :)).

I was also told that the tumour is small in size and therefore I don't need immediate surgery  (within the next two months would be safe enough ).

I feel much better but can't fully relax yet until I will be given the results.

I guess the wait continues so I have to be patient. 

Thanks again everyone! I hope that your health / treatment is going well!

I will keep you posted. 

Best wishes, 

Dan 

Hi Dan, that sounds like really good news. Brilliant news in fact. Looks like you're in very safe hands and going to be monitored so even if it is not in fact benign you will have it removed while it's still very small. So worst case scenario you could lose a kidney? That's why we have 2.

I'm sorry you still have to wait for them to have their conference. It is still very stressful and you should go easy on yourself if you're still feeling ansious and worried. Anyone would be. But still,  it's very good to know they don't think its urgent and that its probably angiomyolipoma.

Cheers, Caroline.

Hi Dan

That really is good news. What a relief! Whatever they decide there on to it. I found that when you finally get to see one of these consultants, they are more friendly and human. Mine treated me like a human being not a hospital number. And I just trusted him, I think that counts for a lot.

i hope everything continues to go well.

Sundial

Hi again Dan.  This is looking better than was originally envisaged.  Don't throw Plan B away yet but I think there is room for positivity here.   Glad you are feeling better and nice to have been able to talk with you.  Annie

Hi Folks,

I have a bit of an update here.

My consultant had a conference with other specialists but they couldn't agree if the mass is begnin or not. As a result I was referred for a kidney biopsy. The procedure will be done on Tuesday. 

I'm kind of relieved as finally I will know what I'm dealing with (once I get the results which should take around 10 days).

Has anyone had a kidney biopsy done? How long was recovery? I hope to return to work the next day. ....

Thanks again. 

Cheers,

Dan 

Hi Dan, I’m just opting to say I hope all goes well on Tuesday. As you say, it’s good that they are going to find out for sure what’s going on. I didn’t have a biopsy. The surgeon said at 14cms the mass was too big to be left so I had a nephrectomy. So I can’t answer your question regarding recovery. Maybe one of the nurses here Can or is there someone on the surgical team you could phone on Monday.? Really sorry you have to go through the weekend wondering and worrying.But it’s good you’re being treated and whatever it is it has to get sorted  

Hi Dan.  If you want to speak to the nurses to find out about the biopsy question they only work Monday-Friday 9am-5pm (0808 800 4040) but you could catch them then.  I had a quick look at the Search Forum (on blue banner above the posts); when I typied in "kidney biopsy" a lot came up, some of it from a few years back but also some more recent.  I didn't read them all in detail but you may find some information there if you wish.  All the best.  Annie

Hi Caggie and Annie,

Thanks for your best wishes etc.

I was reading through some threads and it looks like the procedure is very straightforward. One thing that is bugging me is the recovery time. I was told on the phone that the biopsy will be done around 10:30 am and that I can go home in the evening  (which sounds great). On the other hand I read that I have to lie flat on my back for at least 24 hours because of bleeding issues......)

Anyway I will see  what the specialist has to say :)

Thanks again for your moral support! 

I will keep you posted. 

Best Regards, 

Dan 

Hi Folks,

I just got my kidney biopsy done and I have to say it was a walk in a park in comparison to other procedures that I had to undergo. 

I was in the lucky position that my wife's company health insurance covered me as well so I had a nice single room for myself :)

I was admitted to the ward at 8:30 am and then blood and urine was taken .

At 1pm I was brought into the theatre and an IV line was inserted. I was hooked up to a heart monitor and oxygen mask. After this I was given a sedation and didn't feel anything at all  (not even the anaesthetic injections etc). I woke up in the recovery room without any pain.

Then I was brought back up to my room and was told to rest in bed until 8 pm when I can go home. I got a sandwich and tea 3 hours after the procedure. I have only a bit of pain around the biopsy area but havent taken any painkillers yet. Tomorrow I have to stay in bed and Thursday I can go back to work. Happy Days :)

I have to wait approximately 7 days for the results! Fingers crossed that mass will be benign!!!!!

Thanks again for all the moral support!

Dan 

Hi

That sounds as if it was far better than you expected. Here’s hoping the results are as positive. I have everything crossed for you.

Sundial

Good evening Folks.

I have another update. 

Today I got the results from the kidney biopsy and it's not good news. I was diagnosed with low grade cancer and need to have surgery.

As the tumour is right in the centre of the kidney the whole kidney has to be removed. On the upside I was told that it hasn't spread anywhere else and that I will be cured  (approx 95% chance) after surgery. 

The consultant has scheduled me for keyhole surgery on the 16th of October 2018. If everything goes ok I will be discharged from hospital after 4 days and should be able to return to work after 4 weeks  (I work in an office environment ).

I still have to digest the news but I'm glad that there is a plan of action now .

Cheers, 

Dan