Metastatic Kidney Cancer what to ask the Urologist

Hi ,

So sorry that you have had to come here but welcome to the group.  It is always a huge amount of information to be taken in over a short period of time and as kidney cancer is often discovered during investigations into something else it often comes as a complete shock.  Things will get clearer as you get more information and it will all happen quite quickly although it will probably feel like it is dragging on.

As it is the Urologist you will be meeting I don't know if they will be able to answer all of your questions as obviously they will be dealing mainly with the kidney.  However, it is likely that they will have been to a multi disciplinary team meeting together with lots of other departments to determine the way forward.

The usual way to deal with kidney cancer is to remove it surgically but this is not always the case if secondaries have already been discovered.  If it is surgery this may be a partial or full nephrectomy depending upon the size and position of the tumour.  You can cope well with only about half a kidney but they like to leave you with as much as possible.  The surgery can also be an open incision or keyhole and even robotic.  It does not appear to make a huge difference to the amount of time in hospital as they like to get you out again as soon as possible.  I was in for about five days but I have heard of anything from three days to about two weeks where there were no complications.  Despite not being in hospital for long it is major surgery and you father will be tired whilst his body recovers and will need to gradually increase his exercise.  I was told I would be off work for six weeks but again have heard a wide range of recovery times and it appears to be very individual.

In some cases they decide not to operate as if the cancer has already spread they may have other treatment options and would not want to subject him to surgery which is not going to improve his situation.  This can be difficult to deal with as the natural response is to want to get the thing out of your body.

I am presuming from your post that your Dad has bone metastasis and I have no personal experience of these.  I do know that bone mets can be dealt with differently from other metastasis as they are often treated with radiation to reduce pain. There are a number of different types of kidney cancer, I have the most common Renal Clear Cell (RCC) but the type is usually determined post surgery and the treatment options differ depending upon which type of tumour it might be.

There is a good explanation of the staging and grading of kidney cancer on the Kidney Cancer UK website. If you click the link here it will take you straight to that page but the site as a whole is really good.  As your dad's cancer has spread to a distant part of his body it appears that it will be classed as stage 4 and incurable but this does not mean it is untreatable.

It is worth calling the Macmillan helpline for both emotional and practical support.  They are available on 0808 808 00 00 for you, your brother and your dad and they are not a one off resource, you can call them as often as needed.  They are very good and experienced at helping and offering support in these circumstances.  I do not know if you dad is in employment but cancer is classed as a disability and he has certain rights as a result of this which it could be useful for him to know.  They also assisted me in claiming on my life insurance for my mortgage.  Getting the practicalities dealt with so that I did not have to worry about those at the same time as dealing with a cancer diagnosis was remarkably helpful.  I did not realise how much this was preying on my mind until it was removed.

I hope that this reply has been useful, it is difficult to answer when there are so many unknowns at this time as you are aware.  I also hope that you have a good meeting tomorrow and please come back if you have further questions afterwards.

Wishing you and your family all the best,

Gragon xx

Hi Daddios Daughter.  So sorry to here your news.  I was diagnosed with kidney cancer, also right kidney, on 1st November 2017.  I had an open radical nephrectomy on 30th November 2017.  This involved the removal of the entire kidney & surrounding tissue & lymph nodes.  Whilst it hadn't spread to any other organs, the tumour did grow into a vein & that was cut back, and the unaffected part re-plumbed into my vena cava.  I was in hospital 3 days and able to return to work early March 2018 on reduced hours.  I went back full time end of May 2018.  All scans since are clear & there is no sign of it in my blood.  BP also excellent.  I'm doing really good though obviously not out of the woods yet.  The reason I'm telling you this is there are treatments available and they are getting better & showing improved results all the time.  Tuesday will obviously be a very important consultation for your dad and for all of you.  Do ask whatever questions you need to ask though.  Macmillan are also available to help & advise.  My very best wishes to you & your amazing dad.  Ray

Thank you so much for the replies guys, I really appreciate it. It is the urologist we are seeing today but they have said there was an MDT meeting taking place so I can only think that they have discussed my dad’s case maybe there and the Urologist will tell us the plan? Well if there is one :( x not going to lie, I’m dreading this meeting today, so are my siblings x my dad seems to be holding up okay so far, he’s one in a million. 

My dad has spoken to me about wanting to go ahead with treatment if they offer any, I’m not sure what today will bring with the secondary bone metastasis being so advanced they have already said there is no way to save the arm, so not sure they would remove the kidney if they can’t remove the secondary? It has completely eaten away at the muscle into his shoulder and going into the back :( x thanks for the links about staging, I’m not sure if they can tell what type the cancer is from the CT scans or if they will need to do a biopsy too? In all honesty from what they have already said about how advanced the secondary is, today feels like there’s no hope before we even get there, I just want what time dad has left to be spent as comfortable as possible. Whatever dad chooses to do we will be right by his side, just don’t want him to suffer :( x 

We did speak to Macmillan at the hospital and they have helped fast track some forms for us as dad will not be able to work again, the pathological fracture is through his dominant arm and he has lost use of it completely :( x thank you both for sharing your experiences with me and for the hope, I know today is going to be difficult but I also know it needs to be done to know how to help him x I will update later once we have a clearer picture x thank you again x 

Hi Daddios Daughter.  My best wishes to you all for today's appointment..  Ray

Thanks for the thoughts, 

The meeting went better than I thought tbh, it was still really difficult but we got some answers. 

The cancer is over 12cm long at its biggest point on the kidney, there are 5 nodules growing within the lungs

They are not going to remove the kidney at all because it will delay the palliative treatment (Chemo and Radiotherapy) and there's not much point as it's already within the bones and the lungs. They have said mean survival time is 1/2 years, 3 years if we are very lucky x I'm not quite sure how I feel at the moment, It's better than very worst case but it's still awful :( He has to have a bone scan and they are going to do a biopsy, but that's a little more complicated because my dad has had 2 DVT's in the past so he needs to be on blood thinning injections beforehand. They are having a MDT meeting on Friday and said they will discuss his case then and then they will ring us on Monday with a plan re: date of biopsy and appointments for the treatments x

Hi there and thanks for letting us know how you got on.

Whilst it is not a good situation it is better once you know what you are dealing with and can make some plans about how to deal with it.  Uncertainty is never a good thing.

Don't worry too much about the tumour in the kidney, it is a natural reaction to want to get it out but the fact that he had no symptoms from that tumour means that it will probably not bother him now.  I currently have two nodules of 7mm in my lungs and a number of others that they don't bother to measure.  I am on a trial which gives me treatment breaks and now I am back on my medication hopefully they will shrink like they did last time (the biggest went from 8mm to 2mm) so some tumours respond quite well to treatment.  Again you will know even more about the cancer after the biopsy and the doctors will be able to better determine which medication to give your dad.

I think that there must be very few straightforward patients, I had to get checked out for sleep apnoea before my operation, my dad had heart issues and I know lots of others on the site who have other medical complications.  The doctors are used to these complications and will know what to do to get around it.

The prognosis you have been given sounds quite clear but there are so many variables the doctor is actually saying between one and three years which is quite a range.  There are plenty of people on this site who have outlived any prognosis often by many years, especially as treatments develop although it must be said that some have gone downhill quite quickly.  Someone has the quote after their signature that says "It's not the number of years in your life but the amount of life in your years".  Yes you can plan for the future but make sure you take advantage of the time you have with him to have some great times and build up some really good memories.  Your dad will get probably get tired through treatment and not be able to do all the things he could so you can try and find new and enjoyable things to do.  Activities where you are less active such as watching sport, going to the theatre or cinema of going to a music event or out for a meal (if his appetite is up to it) are good.  I've still been doing family holidays although getting insurance to go abroad is often challenging.  Macmillan can help with getting a benefit called PIP which can help with this but also in getting a blue disc for disabled parking, a godsend if you get tired quickly.

I personally don't like the idea of a bucket list so don't have one but there are some things that I am more open to trying now than I was before as I now realise I may not get another opportunity.

Hopefully the biopsy will be undertaken quickly and your dad can start the treatments soon.

Wishing you all the best,

love and hugs,

Gragon x

Hi Daddios daughter.  It's helpful to have the uncertainty out of the way, but I do realise it still is a huge thing to have to deal with.  As Gragon says, many people to live beyond the advised time scale, & some go years beyond that.  Again, as he says, advances are improving all the time.  Family is so special and absolutely precious so please do take his advice & create many wonderful memories for the future.  getting a blue badge for parking as he may well become very tired.  he won't need to be assessed for disability, as a cancer diagnosis makes it automatic. Do stay on this site & allow the wonderful people here to encourage you.  I have to say that you are an amazing daughter.  Blessings  Ray

Hey everyone, sorry it’s been so long since my last update, things have been a bit hectic to say the least :( x 

my dad ended up hospitalised last week with hypercalcemia, I had actually expressed concerns to the urologist when we saw them about my dad falling asleep a lot compared to usual, loss of appetite etc and they told me his levels were only 2.9 and they don’t start treatment until levels are at three, and he ended up hospitalised with levels at 3.37 two weeks later, I think she was reading the blood results from when he first went to a&e with the pathological fracture in Feb. Anyways he’s home now thankfully, and we can Keenan eye on it x he caught a different infection whilst in hospital and had a bit of a difficult ride but trying to look on the bright side x 

anyways here’s an update on results we have had through now, 

The cancer has engulfed his right kidney, it’s over 12cm long, they won’t remove it at all as it will delay other therapies. He has metastasis in his lungs, skull, left shoulder and spine, along with possibly the right shoulder. The Macmillan nurse confirmed this will affect his prognosis but we won’t know by how much until we see the specialist at Christie’s. They are going to treat the metastasis in his left shoulder with 5 lots of radiotherapy over 5 consecutive days to try and ease some of the pain. They don’t need to treat the one in the spine currently as it’s not yet pressing on the nerves but when it gets bigger that option is there x 

he had his biopsy done on the kidney on April the 1st so we are waiting a few more weeks for his results from that yet I think x the plan is to have a week making memories with him and then start his radiotherapy around the 18th/19th x and we should get an appointment through to see the specialist at Christie’s in a few weeks where we can discuss chemo / immunotherapy  x thank you for all your help so far x