Stage 4 kidney cancer

Hi Sharonred,

And welcome to you and your husband you are on the right site they are a great bunch on this community and we will all help we’re we can, I know you and your husband must be worried sick about the diagnosis but try to stay strong and positive I was diagnosed with kidney cancer in both kidneys but in 2019, I know the unknown is frightening and you can’t sleep it is on your mind all of the time, but I know once you get your first consultation with you consultant they will be able to explain what treatment there is for you, there maybe someone else who has very similar symptoms and be able to help you more I am on my third lot of immunotherapy for my cancer if you want to know more you can look on my notes if you press on my photo you will be able to see my history, take care I am sending lots of wishes and hugs to you both Sandy

Hello Sharonred,

I'm so sorry to hear this. It must be very difficult for your husband. My brother was diagnosed with kidney cancer which had spread to his hip and causing a fracture. The pain was very acute and the medical team prioritised his bone injury at first to try to keep him mobile and to deal with his pain. I remember that at the time we were very worried because we wanted to know more about the kidney cancer and what the treatment would be. However I think it was right that the immediate and painful issue in the bone was dealt with first and the consultation about his cancer took place very soon afterwards - although at the time it seem like forever. My understanding is that the damage to the bone can be helped with surgery, radiotherapy and then bone strengthening drugs to help prevent spread within the bone. I know there are others on here who have had treatment for secondary bone cancer. I am thinking of you and your husband.  sending you very best wishes

Hi Sharonred

I too have stage 4 kidney cancer, with extensive metastates, but not bone cancer. I have been having treatment for a year now, and still able to lead a normal life. I know you must be frightened and apprehensive, but there ARE treatments available, so try to stay as calm as you can whilst you wait to see the oncologist. It's the waiting that's the hardest thing to do!

I too am in Scotland, under the oncology team in Edinburgh.

Sending you a virtual hug

Candysmum

Hi Sandra, thank you so much for replying, it's encouraging to hear that you were able to get treatment. My husband has received an appointment to see the urologist next Wednesday, which I'm desperate for but dreading in equal measures, but we just need to know that there is a plan and give us some hope. I dont know too much about immunotherapy but I'll check it out, many thanks 

Hi Biz,  thanks very much for your reply.  It's interesting that my husband's orthopaedic surgeon has taken a different approach from your brother's doctors, and said that he wont even look at his fracture until  the kidney is dealt with. This is really the biggest cause of his pain as you can imagine his fracture is very unstable the only support is a sling, so he is constantly hurting it or moving it when sleeping.  He is seeing the urologist on Wednesday so we're hoping we get an action plan. I'm just wondering if they will give us a prognosis, did they give your brother one?

Hi Candysmum, thanks so much for your reply. I am very frightened for my husbandcnd what lies round the corner but its encouraging that you are still having treatment.  May I ask if it is chemo or some other type of treatment?  Did they remove the affected kidney? Our GP  doesn't think they will remove his but instead give him aggressive chemo, although he also has heart failure and some chemo treatment is toxic for the heart this adds another complications! We are seeing a urologist at The Gartnavel hospital next Wednesday but I'm worried he isn't seeing an oncologist, I don't want them to waste time.  Did you see a urologist then an oncologist?  He has also to get a biopsy but no date yet, so that will be more delay! Sorry for all the questions. Thanks again

Hi Have you seen the Community Meetups in central Glasgow on 4th and 18th Sept?  I've been to one and toping to make the 18th. More details:   (Missing Blog Post)   https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/cancer-community-meet-ups 

They are friendly and open chats over coffee and biscuits - c6 people there.  

A biopsy is critical to what happens next as it drives the treatment plan and ensures it's targeted to his cancer.  If you haven't got a date for this yet I'd suggest you find out who it's with (urology probably?) ie who has requested it so you can chase if need be.  This period now is the worst it will be - the waiting and the uncertainty along with the shock of diagnosis, but it does get better as things progress.  

Hi Sharonred  I've just read the replies and perhaps sharing some of my experience will help.  I have stage 4 kidney cancer spread to lungs.  Because it's spread to another organ the best approach is to manage the cancer rather than attempt to get rid of it completely.  My kidney biopsy was requested by Urology on referral from an US scan in radiology.  I was a patient of Urology until my CT scan results came through (metastatic kidney cancer diagnosed 24/11/2021) after which they referred me to Oncology at the Western in Edinburgh.  Biopsy confirmed ccRCC a month later.  I've been on immunotherapy since Jan 22 and started a trial in June 23.  Going OK for me.

Hi Mmum, thanks for getting in touch. You're the 2nd person to mention immunology. Is this the usual treatment for kidney cancer, or does it depend on the individual? I'll need to do some more reading on the subject.  I'm hoping the urologist will give us more information.  Did you also see an oncologist, or did you just see the urologist?  I'm concerned we go to the urologist on Wednesday, and then they tell us we need to wait and see an oncologist.  I feel the longer it takes for treatment to start, the higher the risk of further spread and a poorer prognosis. I am driving myself insane with 'what ifs' I hope you're right and that this is the worst part, waiting on a plan. The killer is that we have no control over anything abd are cat the mercy of the NHS.

I wasn't aware of the drop in sessions, I don't think my husband s ready for that kind of thing but then he's never been in this situation before so I'll mention it to him. I'm glad to hear your treatment is going well, that's such a comfort to me. Thank you