Saying hi and my situation

Hi

Sorry to hear of your diagnosis. I’m not a medic so beyond it’s in the middle bit of the kidney I can’t help. However it is great that they are moving quickly for you to remove the cancer. Each of us have different experiences. I’m not sure if it’s any comfort but the surgery takes a while to get over a couple of months and some take longer and shorter times - but it’s just the body healing.  Your named nurse would be a good point of contact and they can chase information for you. Be assured that there is really no wrong question - make a note of them as they come to you and your girlfriend - I had a list on my phone to ask. 

it makes little difference having one or two kidneys I had my left kidney removed and I currently I’m down to half a functioning kidney and still no real difference in the impact of my day to day life - older but active and feel well at the moment :) I’m still being monitored to ensure there is no return but that’s reassuring:) 

I wish you well for Monday 

I found out a few weeks ago it was shocking news as you will well  know , yeah it's in the middle hence full kidney out , the report says it's no extension beyond the perennial fascia, is that good or bad news ? I'm sorry to hear about your situation , life just isn't fair sometimes, have you had to change your diet at all ? I've read about cutting down on protein and dairy products are no , I eat a lot of chicken and drink lots of milk plus eggs .

Yes that’s very good news means it’s contained :) I did change my diet I eat ‘clean’so limit processed anything ( I dip now and again :) I don’t drink anymore not been advised to I just thought I didn’t drink much so I would give the kidney less to have to filter out. I cut out milk but that was linked to helping the kidney manage blood pressure ( yes they are connected- I have learned kidneys are the unsung hero’s of our body the heart gets all the credit but the kidneys  are the band or supporting act! I’m also veggie but I was before so that was no change - you can as for a consultation with a dietician too. Ask they don’t always tell you! 

I do hope all goes well for you the recovery isnt too bad but do rest stick to their guidance or you may double your recovery time… resting is really hard to do. Also talk openly about it with family and friends they will want to help and support you! 

Thank you so much for the advice it's really appreciated 

Stop googling!  Although I know we are all guilty of that.  Anyway, the 5 year survival is not appropriate for your situation.  5 years would be a huge general, sweeping ballpark for metastatic (spread) cancer.  

Once the radical is done and dusted you should be good for a huge reset.  

Ask about Pembrolizumab, an adjuvant treatment to prevent recurrance.  

Yeah doc Google is the worst , it's only when I've started actually speaking to people who have been through this we  get a little hope, is that immunotherapy? It was mentioned after a meeting with the surgeon, I was really hoping life would be semi normal and back working within 3)4 months of the operation , thank you for the advice.

Yes.  Pembro = immunotherapy. 

Good to hear that it's already been mentioned. 

Yes it was talked about but no specific drug at the time , I guess they need the hitchhiker out of me to determine what immunotherapy I need , thank you for the advice and all the best with your immunotherapy and recovery 

Wishing you well with your surgery

Good evening, and sorry you have had to join this group. However we are friendly and a supportive bunch, and will do all we can to support you during this journey. 

My info is in my bio so wont bore you with my details. I am still off work and hoping to return April. I start my immunotherapy pembrolizumab on Friday. So has mine was advanced (clear cell) and 12cm in size they have decided this is the best course of action, meaning my chance of recurrence is 75 per cent of cancer returning in 5 years.

With the immunotherapy gives me a 91 per cent chance of no reccurance with in 5 years and could mean being cancer free for many more years after that. Like anything medical, nothing is a total guarantee and life sometimes has its own plans a foot. However each case and situation is different, so only giving you the info i have been given for my own individual case to help give some context and statistical info too. The therapy does come with a long list of side affects. 

I would try and think about the operation first, as they sometimes dont know the type or staging of kidney cancer till its removed. And from the sounds of things the CT scan had given your clinical team the information they need for the next process, which is your surgery. 

Happy to chat and support anytime.