Hello and welcome.  Dear Dan; what a debacle and I imagine your head is all over the place.  But let's hope for the best and prepare for the worst.  The most important thing is your health; this trumps any other considerations.  So you should perhaps be willing to go through with whatever will get the necessary outcome.  If the guy you are seeing on Wednesday feels that your being overweight means that he does not want to try doing keyhole surgery then this is what you are going to have to accept evem if it is the less popular option.  It sounds so easy for me to say this but you have to put your health considerations before financial ones.  We all hope that this is not a case of renal cell carcinoma but if the worst becomes reality I have no doubt the continued happiness with your family, no matter where you live and how much money you have, will be the most important outcome.  I realise this is a rather cold and clinical analysis of your situation and that you are probably driving yourself nuts trying to remain positive but still feeling a sneaking fear about what may transpire.  It may well all come to nothing and you do not have renal cell carcinoma but I think you should have Plan B filed away somewhere just in case.  Please do keep us informed.  Annie

Hi Annie,

Thank you very much for the welcome and post. 

I think the unknown and waiting game is the worst. If I was offered surgery tomorrow I would be a happy camper :)

We told our 6 y.o. daughter two weeks ago that I have to get surgery done and will be in the hospital for a while. She was taking it quite well but has become quite clingy. Family always comes first for me.

Unfortunately the health system in Ireland is not like the NHS in the UK. You have to pay for everything here and therefore I'm quite anxious to get back to work asap  (I work in an office job).

Cheers, 

Dan. 

Hi Dan

Waiting and not knowing is the toughest part I’ve found. Once you know what you’re dealing with whether it’s diagnoses or treatment you will have something to concentrate on. It’s difficult all round but you know children are very resilient...surprisingly so. As a retired primary school teacher I know how this sort of thing can affect them, I guess your daughter is on school holidays at the moment but might I suggest that if you are still undergoing treatment when she returns to school that you let her teacher know. Behaviours can change and it is important that staff are aware so they can offer support where they can. 

As for your work and money concerns..., do you have access to McMillan nurses in Ireland or something similar? McMillan have people who can help and advise you on all of this. Maybe even suggest benefits or help you might be entitled to.

i hope everything goes well for you on Wednesday but if it is difficult to cope, there are always people here ready to offer support and listen because they just know what you are going through.

Look after yourself.

Sundial

Hi Sundial,

Thank you very much for your kind words. 

Unfortunately we don't have such a support system in Ireland. However there are guys who provide counselling services which might come in handy. 

I will definitely inform my daughter's teacher as she is already struggling in the classroom environment (sensory issues) and is getting additional help from an SNA. 

I'm a lot calmer today as I will be seeing the consultant tomorrow :) Fingers crossed that the waiting time for the surgery won't be too long. 

Btw did you undergo kidney surgery as well? If so how long was the recovery process approximately? 

Thanks again.

All the best. 

Dan 

Sorry Dan. Can’t help you on the kidney surgery front. I’m afraid mine was a keyhole hysterectomy and I don’t think you have the requisite parts for that. :-)) . Have you got a nurse contact at your hospital. If you have, you could give them a ring and ask,Sorry I can’t help on that score.I've had two ops with ten weeks in between and recovery for each has been entirely different, You could type kidney surgery in the search bar at the top to see if there have been any posts and if there has contact them.

Look after yourself.

Sundial

Hi Dan. I’ve tagged [@caggie60]‍ here as she has been through renal surgery recently altho thankfully hers was benign. 

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 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