My journey to this group

Dear ,

Welcome to the community although obviously I am sorry that you have found your self here.

From your post the first thing I would ask is if the consultant who advised you that you had no more than 5 years was an Oncologist?  When my cancer returned and spread I was told that I was terminal.  This consultant was a Urologist and my Oncologist later got very upset when he learnt what I had been told as according to him I am only terminal if all the available treatments have been tried and failed.

My cancer was diagnosed by CT scan and also turned out to be renal clear cell.  Over the past ten years many treatments for RCC have been developed.  I am on a targeted biological therapy called Pazopanib and have been so for over 5 years now and this is managing the cancer.  There are also immunotherapy treatments and they are also now using combination therapies.  Traditional chemotherapy does not work effectively on RCC which is why survival rates used to be so much worse.

Lost of people with kidney cancer are diagnosed through an incidental finding when investigating something else as it is often symptomless.  My cancer still gives me very little indication that I have it but I do suffer some side effects of treatment.

If your consultant is not an oncologist I would be asking for an appointment to see one quickly (I saw mine ten days after diagnosis) and looking at treatment options (I started mine 26 days after diagnosis and that included the Xmas / New Year break).

If your consultant is an oncologist you might want to see if another one is available.

I found that talking to the Macmillan helpline was one of the best things I could have done.  They are knowledgeable and helpful and supportive.  They advised me regarding my rights at work and benefits (you might be eligible for PIP even if you remain at work).  I talked to one of their financial advisors and they helped my with applying for early retirement on medical grounds (I am 58 but get my pension paid as if I had worked until I was 67).  I found that sorting out the practical concerns enabled me to focus upon my medical care.

It is always extremely confusing to start with, a massive change in your expectations for what your future holds, a whole new language to learn and working out what to tell people.

Please feel free to ask questions here, there is lots of experience available here although we are not medically trained and I hope that you will find it very welcoming and supportive.

Wishing you all the best,

Gragon x

Hey Gragon,

Thank you so much for your thoughts and reply. 
Yes, the consultant who gave me the 1-4 year prognosis was one of the urology consultants. 
I have an oncology appt next week, 7 days after the full RCC diagnosis and, at my request all results and papers have been sent to The Royal Marsden for a 2nd opinion. 

Hopefully the oncologist will be able to answer most of my questions. But, I guess it’s natural to do what I’m now doing...... every ache, cough sneeze, soreness....... my first thought is “is this the start of it spreading”, “has the biopsy stirred the tumour to spread elsewhere”, “will I be able to work while having treatment”.

I’m second guessing that an 11cm tumour thats attached to my liver, preventing kidney removal is going to be quite developed stage wise. Fearing the worst but next week should make things clearer.

Take care

Just wishing you good luck for next week, i hope you hear better things from the oncologist. X

Really hope your oncologist  will be giving you much more confidence. Kidney cancer drug research is right at the forefront of major new developments at the moment and there’s a lot of positivity around it. 

Ive been stage 4 for over three years and I feel like I’m basically the baby of the stage 4 group here! Other than treatment related side effects I’m totally well as far as the cancer is concerned, it’s totally controlled by the drug I’m on (Pazopanib like several others here). 

Will keep my fingers crossed you feel more encouraged after your next appointment. 

Hey Jo300

Thanks for your message, I’m pleased that you’re 3 years on and doing so well. 
Obviously everyone is affected differently by treatments, and I’ve seen the drug Pazopanib on many posts on here.

If you don’t mind me asking, are the side effects quite powerful ? How do they manifest please ?

Best wishes

Thanks Sue CC,

Thanks for taking the time to read and reply 

 1 or 2 x

Just read your profile, which answers those questions. Typical bloke search that was  

I’m on Pazopanib too and the side effects are manageable. Hope you get some answers soon. 

Hi

Side effects for Pazopanib are quite wide ranging. I've had various over the years, the majority of which have either been and gone, or are controlled. I've found that by having breaks occassionally some side effects disappear totally and others reduce for a period that far extends beyond the breaks.

Been and gone ones:

Sore hands and feet - I used Lotil cream and it was great

Change in taste buds - not going to lie - horrible - but went after my first break and never come back.

Bowel bleed.

Related to the op - feeling internally squashed when flying - apparently not uncommon - lasted about 12 months.

Here and managed

Increased blood pressure

Underactive thyroid

Sickness and diarrhea - managed until it's not manageable then I have a break. This seems to be my achilles heel. I was told for the first time at my last break that Paz can trigger colitis which I didn't know, so we're now being more active in keeping on top of this.

Here and unmanaged

Exhaustion - comes and goes - some days I can be great others not so. I just don't fight it when I have it. It's not tiredness - it's a total weakness. I describe it has having no legs, body is like a dead weight and my legs don't want to hold it up. This tends to happen more often as the sickness and diarrhea get to the unmanageable stage.

Night sweats which we haven't established if it's the Paz or not.

Low white cell count - but that's become a new normal and touch wood randomly I never catch even a cold. It's dropped much too low only once in the first few rounds and I was given  a break.

That sounds like a hell of a list, but it's really OK. I can't stress enough how OK it is. If you read the list of side effects it sounds quite frightening, but you don't get all of them and you meander your way through some of them and you're monitored constantly to make sure you can cope. 

Also - there are three different doses 400 / 600 / 800 and you just need to find the one that best suits you. Where the pros outweigh the cons basically. And never be afraid of the breaks. Nothing sinister will happen in a couple of weeks - but the benefits of a break can be huge. My sickness & diarrhea disappear totally on each and every break. Last break was start of November for two weeks - and it's really just started to come back in the last couple of weeks and I have another break scheduled for start of March.

Hope that helps.

Hi I'm  on one of the volunteer community champions and also on Pazopanib.

I started it in 2013, had a treatment break 2016 to 2019 then restarted it in Oct 2019. Jan 20 scans showed everything had shrunk. Woopee!

As says, the side effects are manageable.

 The dose most of us are on btw is 600mg/day. This seems to be the optimal dose. 

is right there are an increasing number of drugs available now to treat kidney cancer, much more than when I was first diagnosed  15 years ago.Yes, I've had various mets but due to meds/treatment I'm still alive n kicking.

So your prognosis is based on stats, whereas we're all individuals. Get your questions written down n take someone with you to jot down the answers, to read again later - glad to hear you're seeing an oncologist soon 

Let us know how you get on. We're here for you.

Sue