Hi, Brother's 200mm tumour on kidney.

Hi Trevor. Best of luck to your brother. I thought it might be useful just to recount my own experience...

I had my kidney and ureter out 11 weeks ago as I had a fairly large tumour in it. I also had a small one in my bladder which they cut out during the initial investigation. When they remove the kidney they cut out a margin of fat all around the edge and take out the kidney whole and then analyse the whole thing after to see if any cells have come through into surrounding tissue. I had completely "clear margins". .And then they can also confirm what grade it is. (Mine is Grade 3, so a bit more aggressive than the Grade 2 they thought it was, but even so no chemo regime or anything). Only then do they decide if further treatment is needed.

I had a catheter in for my hospital stay and for another week or so.. so for about 2 weeks after the op, When they removed it they gave me a "chemo flush" which is a single chemo dose direct into the bladder via the catheter.. then you wait around for an hour and they check you have peed normally before you can go. Your pee comes out lilac coloured..! I assume all this applies for men as well.

As my margins were clear I will just get scanned in about 4 months time to check there are no signs of spread elsewhere. But for now no further treatment. I was 9 days in hospital as they could not initially get the pain well controlled..it is a big operation and they don't really tell you as much as they should in my experience. My consultant did say " put it this way.. you will start to feel human again in about 3 weeks", When I went to see the cancer nurse she said "Well I would say about 6 weeks to be honest!". There is a team of cancer care nurses attached to the consultant and they are there to ring and ask about anything .. your brother and parents should have met with one after seeing the consultant? And been given contact numbers and some info and the Kidney Cancer booklet from Macmillan? I presume you had similar after your bladder cancer consultation and treatment plan appointment?

I found it more painful even than I was expecting to be honest... but kept being reassured that is normal with this op. One nurse said "we know when we get a kidney removal admitted that we are dealing with quite severe pain" .. which was actually reassuring as otherwise we worry it is a sign of something wrong! I couldn't have morphine or codeine as pain relief so I was on Oxycodone and parcetamol which took the edge off. I cried with the pain at times and that too is not unusual, so they told me!. After 3 weeks I went on just paracetamol. Then stopped them except at night at about 5 weeks. Altogether It took about 7 weeks to feel fairly normal, but everyone is different.

I went to a convalescent home for 2 weeks after discharge as I live alone and am 73.  It is in Sussex on the sea front and there were people there from quite far away as well as relatively local as it has a great reputation... it is an amazing place and half the price of most. £850 p.w. all in. Google "Rustington Convalescent Home" if interested. Wonderful friendly staff including a nurse always available day and night to ask about any concerns and to check the wound is doing ok and you are taking your meds and your anti-coagulant injections (which they will do for you if you are a bit wimpy about needles .. though it is actually very simple and pretty painless!), wonderful surroundings, warm, clean, own room with ensuite, and amazingly good food. Like a lovely hotel overlooking the sea! I imagine that as long as your brother can lip-read they would be happy to take him should it be a possibility and not too far from home to be practical. They even have a couple of twin rooms for people who want a family member with them.

I hope that is some help. Don't hesitate to ask questions of the hospital, and chase up answers etc.. if your parents find that hard you can probably ask to be his advocate. I certainly found in today's overstretched NHS that you have to be your own advocate and stand firm at times. I found as long as one is polite and not rude they are usually happy to help and sort things. I had a few muddles along the way with lack of info, poor communication between departments etc.

Though it sounds as if you have your own stuff to cope with for now. Best of luck to you too. Tilly.

Hi Tilly,

Many thanks for your reply and for the detailed response. Quite a bit too take in, but I really appreciate you taking the time to add all these details.

I'm calling my parents tonight so will pass on your experience and I'll also my message my brother.

He has two grown up children, but they both don't drive but I'm sure they'll help.

I started my next batch of BCGs next week, which usually ups my urgency for a while so the 90+ min journey could be a struggle for a while.

I find dealing with my own cancer a lot easier than having family having to deal with it. I guess nobody wants to see family in pain etc.

Thanks again for your reply and I wish you all the best as it sounds like you've been through quite a bit also.

Take care.

Trevor 

Hi Trevor, of course it's OK for you to post here and welcome to the forum.

TillyV has covered lots with a very informative answer and if you have any further questions, feel free to ask.

Here are my thoughts ...

Open surgery and on a tumour of that size will be major surgery and recovery will take a while ... I'd say 3 months to recover (with a need to take care up to 6 months for anything strenuous or heavy lifting) but with the caveat that he is likely to feel more normal and start to be able to do more after 6 weeks, like Tilly has said.

The body is amazing in how it can repair itself after surgery.  They are likely to get him out of bed the day after surgery, and help him to have a very little walk.  For me, day by day and then week by week, I noticed improvements.  Walking a little bit more each day whilst in hospital and then by the time I went home, I would go out for a 10 minute walk, building up to a 30 minute walk after 6 weeks.  Felt like quite a milestone when I reached that point.  I had my Catheter taken out whilst I was still in hospital, once I was able to get in and out of bed on my own and walk around OK.  They are also likely to give him surgical stockings to wear which are to help prevent blood clots.  This is a bit of a contentious issue on this forum but I was advised to wear them for at least 28 days and ideally until I was starting to return to pre surgery activity.  I did this without any problems.  He could perhaps ask a question about this to one of the nurses whilst in hospital?

Everyone is different though, so please tell him to be kind to himself and listen to his body.

200 mm is very large but there are others who have also had very large tumours, and I have heard of even larger than that.  Kidney Cancer is an unpredictable disease.  Some people have very small tumours which have already spread at the point it is diagnosed whilst others have very large tumour (very similar size to your brothers) and are still showing no sign of any spread even 5 years later ... I think the longer without any sign of spread, the more likely we are to remain cancer free.  He will almost certainly have regular scans going forward for at least 5 years.   As Tilly has said, they tend to analyse the tumour after it is removed and decide at that point whether further treatment is needed.  Even if no further treatment needed, they decide at that point how often to do the scans and for how long.

As to questions he could ask, perhaps what stage it is?  Kidney Cancer is often given a stage between 1-4.  They will know this from the scans.  I think stage 1 and 2 are very localised within the kidney with no spread. There are 2 types of spread.  One is where it has spread to other parts of the body (Stage 4) and the other is local spread (stage 3) for example into the fat that surrounds the kidney or into the adrenal gland which is situated on top of the kidney.  Local spread can often be removed during the surgery.  So another question he could ask, is whether it has spread into the adrenal gland.  Not everyone wants to know, of course.  There is usually another adrenal gland on the other side, in the same way that we have another kidney on the other side.

After the surgery when the pathology report is back (that sometimes takes about 6 weeks) he will likely see the surgeon again to check on his recovery and discuss the results.  At that point he could ask the grade of the tumour and also the librovich score ... the latter takes into account various factors which includes both the grade and also the size along with other factors.  This is the score that determines whether he is low risk, intermediate risk or high risk for the cancer to return, if they have successfully removed it during surgery.  I got the sense from your question, that you are asking, does the size mean high risk.  Not necessarily.  And that's the main reason for me explaining all this jargon.  Don't give up hope.  I don't know how things will work out for me but I am trying to stay positive.  I don't know how your brother feels, some people don't want to know all the details.  I always ask lots of questions because I want to know.  I imagine it could be frustrating for your brother to be dealing with this whilst also not able to hear properly.  I hope this is of some help.

One key aspect for him to consider is how he will get home after he is discharged from hospital.  Not sure whether the hospital can arrange any transportation?  Or a taxi?  Does he know anyone nearby who could take him home?  Is it worth asking PALS whether he can have an advocate to help navigate these things with the hospital?  Perhaps an advocate who know sign language (if that would be helpful)?  Either way, my top tip is to have a pillow, or cushion, or rolled up towel for the journey home, to place between his wound and the seat belt.  Expect the wound and abdomen to feel quite delicate!  Expect a large wound for open surgery.  And also perhaps a v pillow or extra pillows on the bed back home for sleeping, because I found it difficult to lie flat at first and I know many others do too.  Can also be difficult to lie on side until after a few weeks.  

Best of wishes to yourself too with your own treatment.

Hi Tinkerbelle,

Many thanks for your reply and hope you are doing well.

Lot's of information to digest and I'll start making some notes so I can pass these on.

He will be able to get to and back to the hospital but appreciate the hint regarding the pillows.

Again I really appreciate that you've taken time out of your day to post such a detailed and helpful post.

Wishing you all the best.

Trevor 

Hi Trevor 

• I had a 170mm tumour on my kidneyI had a operation to remove my left kidney in February 2024 the operation lasted about 4 hours and I was in hospital for a week i had a 250mm wound on my abdomen which took a while to healI took me about 2 months to recover and get back to a normal life hopefully this information may help feel free to ask me any questions 

Hi Steve,

Thanks for sharing your experience, hope all is going well for you.

I'll pass this information on. 

Just a quick question if I may?

When they say a 200 mm tumour. How is measured? I mean is it the length or diameter, does the tumor wrap around the kidney or does it sit on top ( for example)?

Thanks again and hope you keep well.

Trevor 

Hi Trevor 

My tumour 170mm x 140mm x 150mm and it it sort of grew on the side on my kidney and hung down hope this helps feel free to ask any more questions 

Thanks again Steve,

I've passed on this information. That's quite a mass, I find it hard to believe they grow so big.

They found some shadowing on the lungs so will be having a MRI on his chest area.

Sounds like everything is moving quickly for him so that's good.

Thanks again for the help and info.

Keep well.

Trevor