Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

My Official Diagnosis Letter Arrived ! Scary.

Scubacrazy
Posted by

Hi All.

Further to all the tests, scans, and examinations I have had recently, I received a copy of the letter to my GP which has confirmed my diagnosis.

It's a bit confusing though, and also a bit overwhelming. Here is what the consultant said ,

"Diagnoses:-

1- 8.5cm Lower pole cRCC.

2- Renal Vein level 1 Thrombus clinical T3a.

3-1.5cm left upper lobe lung nodule.

4-8mmright lower lobe lung nodule

5 Clinical Staging cT3a N0 M1 "    (Not too sure what this all means )

That was copied as is from the letter.

I am scheduled to have the right kidney removed on Thursday 7th November. I am under the Royal Free in Hampstead, London, and the surgeon is Mr Axel Bex.

Needless to say, I am nervous as hell, and quite frightened.

All this has happened so fast I don't think I've had time to digest it all.

So far, little has been said about after the op, and ongoing treatment etc., although he did mention immunotherapy and not chemo. I'm not sure.

Sorry for the long post, I just need to get it off my chest.

I’m doing this the only way I can. One day at a time. 
buttercup01
Posted by

Hi Scubacrazy,

Sounds like u need tor ask either your surgeon or GP to explain the letter in layman' s terms.

Or you could "ask an expert" but it may take them a couple of working days to reply n it's the weekend .

I'm not surprised u need to get it off your chest. Most of us would b glad it was moving so fast tbh.

  Surgery is often all that's needed, tho it reads as if u may need some post op treatment as well, due to the lung nodules, but they are very small . Drugs for kidney cancer are developing all the time. Also it's slow growing compared to many other cancers.

Do post here to let us know how you're getting on. Have u got an op date yet?

Thinking of u x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Dreamthief
Posted by

Morning

Sorry to read about your RCC, anything like this coming out of the blue is all scary stuff at first.

You could while you wait some more experienced group members replies check out this page which explains the Renal TNM scoring scale here at Kidney Cancer Org UK.

Macmillan also has this extensive Kidney/Renal Information Section.

Hope this is of some help for now, G n' J

Scubacrazy
Posted by

Thanks for your reply. 
 I am seeing my gp on Monday.
 My op is on Thursday 7th. Not long to wait,but I am absolutely petrified. 
 Even though it is being done by a top surgeon using the davinci robot. 
 I’ll keep posting though. 

I’m doing this the only way I can. One day at a time. 
forgottenworks
Posted by

Hi  

All of us here will vividly remember how a cancer diagnosis suddenly tips the world off its axis, throws us wildly off balance. Fills us with anxieties for the present and fears for the future. We’re with you. 

Over the longer term, you learn to accept a higher level of uncertainty than perhaps you have been used to. But for now, you can start to regain some balance by focusing on what you can know and what you can do: the Now of practical things. 

If you want to, you can find out more about the TNM clinical staging system for kidney cancer. But your T3a N0 M1 is just an at-a-glance code that summarises your cancer at the time of diagnosis.  

T stands for Tumour and so T3a means that your primary tumour is of a certain size (in your case 8.5cm) and has grown into the renal vein and/or the fat surrounding the kidney. (Mine was also right kidney, but 13cm and growing into the vena cava.) N refers to the lymph Nodes, so your N0 means that no cancer has been detected in the lymph nodes. That is a good thing. The M is for Metastases, the number of different locations in the body where your cancer is known to have spread. Your M1 is the one you already know about: your lungs. (That was the same with me.) 

You have two small metastases in the lung. These will be addressed in due course most likely with drug treatment, either targeted therapy or immunotherapy drugs - or perhaps now a combination of the two. (Kidney cancer does not have ‘chemo’, as most people might understand the term, but it’s the equivalent.) But all that is a way off. Right now, focus on the practical details of getting to the hospital for your op, which is only a few days away now, and what you’ll need there, and then concentrate on the realities of recovering from your surgery. Let your world shrink right down to just THAT, and then expand out again as you are able to, but one step at a time. (Literally!) 

I don’t want to overload you with stuff. Some people prefer not to know too much, whereas my way of dealing with it, I’ve discovered, is to find out as much as possible, look the ogre straight in the eye. Give me a shout, you can ask me anything you like.
All the very best to you,

- Mark 

buttercup01
Posted by

Well said Dreamthief n Mark!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Scubacrazy
Posted by

Thanks for your replies. Mark, your post was very useful and informative. I appreciate it very much. 
I have done a fair bit of research especially on the DaVinci surgical robot which they will be using for my op. 
Fascinating stuff. My fear of surgery is quite high, as it is with  many people I guess. 
I am concentrating on Thursday now. After that, the many questions regarding drug therapies will no doubt start. 
‘thanks for the replies. 

I’m doing this the only way I can. One day at a time. 
forgottenworks
Posted by

If you don’t mind me adding a few thoughts, unasked: 

I was in Intensive Care for a couple of nights after my op, and knew I would be, but more likely you’ll be in a High Dependency Unit before being moved down to the normal ward. There, expect to be drifting in and out of consciousness, perhaps asleep for much of the day and awake for spells in the night. You’ll also be full to the brim with morphine (or whatever it is they use) and other painkillers, so expect your perception of things to get a bit weird. Don’t be thrown by that. Even if things get a bit grim at times, if you can keep a part of your brain able to think, “This is really interesting” or even “This is actually quite funny,” then that’ll stand you in good stead. Anyway, the nursing staff will look after you very closely. 

In IC or HDU, and for your first day or two on the ward, you won’t need much. You’ll be in a hospital gown, you’ll be sleeping a lot, and you won’t be in the mood for ‘entertainment’. I didn’t bother buying a card for the hospital TV system. A tablet or smartphone with maybe an audiobook, podcasts, or some music downloaded to it will probably be all you can manage. So take earphones; that might also help if other patients are making noise. 

They’ll be keen to get you up and about as soon as possible, so you might want your own dressing gown. Also towel, T-shirts, pyjama shorts, slippers, you’ll be getting your suitcase sorted out now. Toothbrush, toothpaste, face wash, wipes, shower gel, shampoo: I’d suggest getting those small ones from the Travel section in your local supermarket. 

Scale your expectations down and be proud of yourself for each small accomplishment that comes along. There’ll be a time when just getting from your bed into the bedside chair will feel like a tremendous task. The first time you manage to walk unaided to the bathroom, the first time you can walk the length of the corridor, will feel like Olympic achievements. But do as much as you can, moving is important in getting your body working again. Something to be aware of is that, after surgery, constipation is likely to become an obsession - to the extent that one’s first post-op bowel movement, well, you expect it to be declared a Public Holiday and a Day of National Celebration!

So expect some emotional turbulence. It’ll be an intense time, most likely. And I think you’ll learn a lot about yourself

Joncol
Posted by

Wow forgottenworks you have explained it far better than I ever could. I had my radical nephrectomy nine months ago and although I haven’t forgotten about it most of the time I can put it to the back of my mind. Just the sight of the scars that give reminders.Your brilliant description has brought back memories so clearly. As you said you do learn a lot about yourself. I was desperate to get out of hospital but had no idea beforehand what a major operation it was. Walking definitely helped my recovery and regular senna!

Jane
Scubacrazy
Posted by

Wow. Thank you forgottenworks. 
From what they said to me at the pre-op stage they are operating on Thursday and if all goes well they hope I might go home on the Saturday or at the latest Sunday !!

This is due to the robotic surgery apparently  

We shall have to wait and see I guess. But thanks for your insights and advice, I’m sure your version might be closer to what I should expect. 

obviously I will report back on here and let you know. 

Thanks again for the replies. 

I’m doing this the only way I can. One day at a time. 
sueCC
Posted by

Scubacrazy, Just wanted to add to Marks post.... my husband had his kidney out a year ago (after 2 cancelled op) My husbands 76 had 2 cancerous tumours measuring 30cm together, he had open surgery on the Tue and was home on the Friday doing very well. Just wanted to let you know everyone is different 

Mark, I’m pleased to read you’ve been signed off from bladder cancer but sorry about the kidney cancer, hope the drug treatment works well for you Xx

Sue Xx
Scubacrazy
Posted by

Thank you SueCC for your reply. 

You make a very good point too, about how everyone is different. 

‘I’m still very nervous of any surgery though ,but I’m just going to have to get on with it  

I’m doing this the only way I can. One day at a time. 
amye
Posted by

Hi scubacrazy , My hubby had his right kidney removed 12 years ago he was back working full time within 6 months,  the cancer came back on the renal bed 3 years later again they were able  to operate , it came  back again last year on the lungs spine and ribs he has been on an immunotherapy drugs trial of  nivolumab and ipilumamab  which unfortunately didn't suit him but apparently it is getting some really good  responses for kidney cancer,  there are many drugs out there for rcc,  good luck with your op on Thursday , 

Take care x

forgottenworks
Posted by

No, no , listen to what your medical team says, not some random verbose guy on the forum! When you originally wrote that you had a thrombus in the renal vein I assumed that meant you’d have to have open surgery, as I’d had to with a thrombus in the vena cava. But no! And I’m delighted to be contradicted. In on Thursday and home at some point on the weekend, that’s a pretty smart turn around. (Looks like I’ve got some reading about the daVinci robot to do.)

Anyway, we wish you the very best for Thursday, all of us, I’m sure. You have an interesting week ahead of you and when you feel able to we’d like to hear how it went and how you are. 

 -Mark 

Scubacrazy
Posted by

Thanks forgottenworks, although “some random verbose guy on the internet” is a bit harsh ! Lol. 
YouTube has some interesting vids on the DaVinci robot. 

You’re absolutely right about an interesting week coming up. 

Thanks again for responding. 

Gary. 

I’m doing this the only way I can. One day at a time.