Support

Hi Ali2020ali123 and welcome to the Macmillan Online Community although sorry that you needed to find us and especially sorry to hear about your partner's Kidney cancer diagnosis. Although I don't have the same cancer as you I know a cancer diagnosis brings many questions, confusion and lots of stress but talking with other people who are making the same type of journey will help you navigate this rollercoaster.

I see you have already joined our Kidney cancer forum where you’ll be able to talk to others making the same journey. I’m sorry to see no-one’s answered your post just yet but I’m sure someone will be along very soon. It might also be a good idea to join the Emotional Support for yourself.

When you have a minute, it would be helpful if you could pop something about your partner's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. (It also means that you don't have to keep repeating yourself.) To do this click on your username and then select 'Profile'. You can update it at any time and if you're not sure what you should write have a quick look at mine by clicking on my username.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section. 

Hi ,

I had a partial nephrectomy 8 years ago and was advised two years later that it had spread.  Since then I have been taking a biological therapy (a tyrosine kinase inhibitor) called pazopanib which manages the cancer.  It cannot cure it but it can reduce it.  Advanced kidney cancer is often regarded as incurable now rather than terminal.

This forum is a bit quiet at the moment but you can get support and information here.  Two other good sites are the Kidney cancer uk website and the Cancer research uk site which are both very informative.

I can understand your anger as I have lost both my parents, an aunt and uncle and my father in law to cancer.  However, as a patient you can only stay angry for so long.  After that you have to find a way to cope with it.  For some people this can mean ignoring it for as long as possible.  Unfortunately a lot of the support that is usually available has been compromised by the covid restrictions.  Macmillan often have walk in offices at the hospitals but these are limited now.  The helpline is a great resource both for emotional and practical support but please feel free to ask here if you have any specific questions.

Wishing you and your partner all the best.

Gragon x

You are still here! I am so glad to see that. I am here as a survivor. 

Hi ,

I'm not sure if you mean alive or still on the Macmillan website but the answer is definitely yes to both.  My first line treatment continues to work although I keep expecting it to fail as 6 years on one treatment is good going although there are a few on here who have been on the same treatment for longer.  When I was first diagnosed it was a choice of Pazopanib or Stutent but there are so many more treatments developed now including immunotherapy so there are now choices available if it does start to fail.  If they all work as well as Pazopanib it will be something else that I die of rather than my cancer.

I tend to spend more time on the living with incurable cancer forum but still keep an eye on the kidney cancer group as well.  As the Community champ has not been well, and most people posting seem to be new to the site and needing a bit of support and guidance, I have been posting a bit more here recently.  I am even surviving the lockdown and as a result of the medication have had my first vaccination.  I hope it all works out as I am getting very stir crazy, I want to sit at the seafront, go to a pub for a drink with friends, go out for a meal and go somewhere sunny for a holiday.  I am fortunate that as I am retired and, unlike the people whose jobs have been at risk, I have had the same income but spent much less than normal so can afford to do all of the above once the lockdown ends.  At the moment a trip to my oncologist or for a CT scan or blood test counts as a day out!  At the moment i would settle for being able to see my family again.

How are you getting on, well I hope?

love and hugs,

Gragon x

I am glad to  hear that you are still here in both ways!  I have chosen to retire from fulltime work as I am weaker than I was but I have been given a 5 years all clear now. I know someone who was unwell at the same time as me. Her diagnosis was far too late.