New diagnosis- so many questions

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Hello all,

I am new here and was hoping that someone could help me ?
My father aged 67 has recently been diagnosed with renal clear cell carcinoma stage 4. It has sadly already metastasised to his abdominal lymph node and his lung. In terms of size, dad doesn’t want to know measurements (I suppose he doesn’t want to visualise the cancer then??) so I can’t help with sizes only location and stage.

dad is on the whole very well in himself and symptom free (occasional lower back pain but otherwise this is all) we are so thankful that he is well and not suffering at this time and can still live life very much normally. this has all come about from investigations for anemia.

we met the oncology team yesterday for the first time and they are ‘watching and waiting’ before starting immunotherapy. I did voice concern that we were effectively doing nothing but they said that this is common practice as he is so well in himself with no symptoms or pain.
Now after having time to think, I understand this approach and can rationalise what they are saying. Quality Over quantity is important.
they are going to repeat the ct scan in 4-6 weeks as that will be 3 months from the prev ct scan. Any change or growth and they will start immunotherapy

it just seems that I can’t find any other similar story if someone with stage 4 kidney cancer being conservatively monitored- people are starting immunotherapy Immediately.

so my questions are- (wish I had these questions yesterday!)

has anyone else had this approach of care takn and if so, how did it pan out? I know everyone is different and everyone’s path will too be different. I pray that it doesn’t grow/change etc for years and years to come but know that this is probably unlikely???

my dad is hypertensive and type 2 diabetic, is that why they don’t want to jump in with immunotherapy? I’ve read that there can be some pretty nasty side effect from toxicity :-( and wondered if his underlying morbidities affect this. Or is it because he is so well in himself that there is no reason to at this point? I understand that this cancer is terminal and that it cannot be cured- so is it a case of keep well for as long as poss and then start immunotherapy when required?

my dad is being incredibly brave and taking all of this in his stride- I honestly couldn’t be prouder of him ️

Mmum over 2 years ago

Hi, I'm stage 4 renal cancer, spread to lungs. I do conform to your data collection - in so far as I was diagnosed in Nov 2021 and started immunotherapy (ipi/nivo) in Jan 2022, pretty much straight away. I'm 53 btw.

However, I've experienced a less common immune related adverse event - interstitial nephritis, basically impaired kidney function to you and me. My treatment was stopped, just restarted it this week, but if same happens again then I can't have any more nivo.

We've started talking about "what next?". My oncologist is involved in research that determines the optimum amount of drugs we should have. We already know from trials that delays to immuno treatment don't alter the final outcomes. His research is looking at giving less treatment, I don't know whether less frequently or smaller doses, or both, to achieve the same outcome.

If my treatment is pulled, he has another drug in mind, a TKI, and is also suggesting a watch-and-wait strategy. Different watch-and-wait strategy to your Dad because my cancer is already under control and shrinking with the ipi/nivo.

When I was considering my line 1 treatment, my oncologist told me about the school of thought you mention here -> "so is it a case of keep well for as long as poss and then start immunotherapy when required?"

The idea behind this, is that the cancer gets the better of the treatment eventually, so delaying the drugs may be able to optimise the overall survival. Who knows?!

I was also offered watch-and-wait in Dec 2021 instead of treatment but I discounted it. There was no way I could cope with it! But now, with the ipi/nivo having done its thing, perhaps I would consider it.

Immunotherapy (possibly long term usage) can cause diabetes too. It just happened to someone on here, in the incurables group.

But immunotherapy is better tolerated than chemo though, imo. Perhaps I am biased - as I have never had chemo so my view is based on hearsay.

Sandra 55 over 2 years ago

Welcome Positvitea,

I am glad you have found our community we are a very friendly, helpful bunch on this site, everyone is willing to help with questions you may have about your father, so sorry that your father has joined our group as no one wants too be in that situation, there will be someone here who has the same as your father and waiting on treatment, a lot of us have had kidneys removed and than gone on to treatment, there are as you say waiting I don’t think it is your fathers other health issues that they are waiting as when I first started I was type 2 and I have a under active thyroid, but after my removal my cancer spread so that’s why I started treatment to give me longer usually the doctors will explain their reasoning maybe someone will be able to tell you what to ask, your father like everyone will have his moments but you just have to be there for him do keep us informed how he is doing and ask questions we are here to help.

Take care Sandy x

Sandra 55

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