I had very painful hips and sciatica for over 9 month and was eventually sent for an MRI scan which resulted in a mass been found on my Kidney in November 2024.
After numerous tests and scan I was diagnosed with MRCC stage 4 in February 2025, which had spread to my liver, shoulder and nodes in my abdomen and neck. I also have two small blood clots on my lungs and take blood thinners.
I was told it couldn't be operated on and they couldn't be cured and they could only offer treatment to try prolong life. They wanted to start me on first line treatment of Cabozantinib straight away as the cancer was advanced.
Unfortunately the cancer in my shoulder was so painful and it had started to fracture my shoulder so I was given a full shoulder replacement. Due to the recovery needed from the operation the treatment was delayed as this would have slow the healing process.
I am still in a lot of pain from the operation which was 5 month ago. They then started me on 40mg of Cabozantinib 5 week after the op. Due to side effects it has now been dropped to 20mg because quality of life is poor. I was told to take it for 2 week then have a weeks break over the next 3 month.
I had a 12 week scan which showed the kidney had stabilised but the liver and abdominal nodes had increased slightly. They decided to continue with the treatment as they were not 100% sure if the growth had taken place in the 5 week delay in starting treatment or while taking Cabozantinib.
I am due a scan November with follow up appointment to discuss the results. If it has continued to grow but not spread I may make it to February to see my grandchild born. If it has spread further or the kidney cancer increased it will make it harder for them to get me there.
I have always known it was incurable but still hoped I would have longer. Doctors and palliative care team have been fantastic.
Reason for my post is to grab onto any hope if someone else has gone through a similar experience and lived longer.
Hi SMUDGE8bf5f5 and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……
Living with incurable cancer - incurable patients only
……. support groups.
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect with a group kick on the links above then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
