Stage 4 kidney cancer

Hi Dolly

Your husband's diagnosis sounds very similar to mine. I was diagnosed over 3 years ago, and was given a course of immunotherapy. For various reasons, this treatment stopped after one year, BUT my cancer was stabilised by the treatment. I have been leading a totally 'normal' life, and I feel well.

Unfortunately, the internet can be a very scary place! A lot of the information you will read about kidney cancer is totally inaccurate, or out of date. 

Stick to the information you will find on recognised, reputable websites, such as this one, Cancer Research UK, Kidney Cancer UK, the NHS sites. Ignore the others!

Kidney cancers tend to be very slow-growing, and quite often, they are found by chance. My oncologist reckoned I could have had mine for 10 years, and I had no symptoms.

I know this is a very worrying time for you....the beginning, with all the investigations and tests, and waiting for results, is the hardest part, most people say.

Once your husband has a clear treatment plan, all will hopefully fall into place, and you will get into a routine together.

I hope all goes well, and he has his results and treatment plan soon!

And keep away from Google!

xxxx Kate

This.

Please don't scare yourselves by Googling or Duck ducking: Kate has summed this up beautifully. Out of date information is worse than no information. Far worse.

As for Stage 4 RCC I had this diagnosis in 2013; see the thing is RCC is often not one of your vicious ravenous cancers and here I am for better or worse 12 years later, and Kate is correct it's largely a stealth cancer. Now your team has IDd it, targeted therapy is possible or immunotherapy - radio and chemo arent effective with RCC- and your husband is in the BEST possible hands. Rest assured.

If I can beat the odds after 12 years, so can your husband! I am a terribly poor and contrary patient.

Bestest of wishes, Bertie.

Wow that’s great makes me feel more positive I hope you are doing well and I really appreciate you taking the time to reply to me as well you have gave me some hope thank you xx

Your doing amazing thank you for replying to my post I really appreciate it just some words from someone who has suffered as much as you gives me some hope thank you xx

Hi - I was diagnosed with stage 4 renal cancer, spread to the lungs, in Nov 2021.  Since then I've been on immunotherapy until June 2024.  The lung mets are no longer detectable and the main tumour shrunk from 5.9 to 2.3 cm.  I've been fortunate to have such good response to treatment.  I recognise it's early days for you but it isn't all doom and gloom. 

Hi Dolly,

I can see that you have received excellent advice on the responses here. I was diagnosed stage 4 rcc in January this year. My tumour is 13cm x 11cm, Mets to spleen.

Initially told I was to have a radical nephrectomy this was over ruled by the consultant due to size and location of the tumor.

Following a slight delay due to BP issues I started immunotherapy at the end of April and targeted therapy in mid May. My most recent scan on the 8th of August showed that the mets are stable and the main tumour has reduced slightly.

I did have nausea and appetite loss for a short time but have eating and drinking normally for a long time now. My other issue is with BP for which I am now on 3 medications to control it. I don't feel ill in any way just get a bit tired.

Hope this helps.

Vicki

Hi thank you for sharing your journey with me has your tumour shrink in size yet was you offered a operation my husband couldn’t have one yet because his blood are not stable we was hanging on to that as the size of it is quiet big we’re waiting for a biopsy appointment to see what type of cancer it is everything seem to be a long wait for appointments which doesn’t help I know it’s same for everyone it just feels like your been left my sister is a ward sister so I do understand how difficult it is for the doctors I wish I had a magic wand I hope you continue to improve thank you again for telling me xx

Hi could I just ask how big your tumour was and did it shrink with the  immunotherapy if you do t mind sharing thank you xx

Hi Dolly

I'm not certain how big my tumour was...12cms I think. Yes, all my tumours shrank by 50% or more after 4 sessions of immunotherapy, and the smaller ones disappeared, or had become so small they did not show up on the scan.

The tumours have stayed stable since my treatment. My last session was in July 2023. I know this stable situation won't last forever, but the oncologist has other treatments up his sleeve to manage the cancer. 

Always have hope Dolly!

xxxx Kate

Just to offer a smidgen of reassurance, although situational or subjective in this case.

My old Oncologist, now retired, surprised me when, after RCC had utterly eaten away my left kidney, (2kg tumour) had my entire spleen for a second course, nibbled away at my pancreas as an Ors d'ouvre, had a Renal gland takeaway twice and for dessert a bit 'o' lung and a bigger serving of liver. Initially undetectable but by chance discovered by my neurologist, a former GP.

Sayeth he: "Kidney Cancer is kinder than most others". which flummoxed me at the time but it's true subjectively: it's a really crafty stealth cancer but I think what he meant was that it gives time for more medical options to be considered, unlike fast cancers. I shant name them.

I was given between 2 and 7 years to live after all that mayhem internally: next year will be 13th year of being an idiot at large, post prognosis.

Is RCC kinder than most? I have no other cancer so quite hard to compare, but yea, I agree all things considered.

Hope this offers some sort of reassurance: RCC is a tortoise more often than not. There can be more options for your Team.

God bless you both.

Bert