Hello, just an obligatory welcome post...

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Been at this thing for 2-1/2 years now, stage 4 kidney cancer, and live in the US (is that an issue, mods?)

I have just a few questions that maybe more knowledgeable patients would know about... 

Let's see, large mass on left kidney removed, along with kidney, adrenal, etc. after 12-15 years of no scans as we don't do preventative scans here (for shareholder benefit). Say blood in urine (first time: a LOT) as first sign, found that the cancer mass had built it's own blood vessels to bloodstream, unsatisfied with the filtered stuff...

Other details since, a bit boring... I really don't mind having cancer, as long as there are no symptoms. But now they see a mass (5mm) on my right (remaining) adrenal gland (humorously called an "incidentaloma"), and want to just lop off the gland & mass. They are both 5mm, so why do BOTH have to go?

Latest tests showed that the mass is not interfering with adrenal operation, so...? 

We live in good times, though, where we can learn enough to have relevant discussions with caregivers.

  • Hiya and pleased to meet you, albeit here.

    The easy answer is international friends are just as welcome as UK ones.  I know of several overseas members.  

    "incidentaloma"  Laughing

    No idea on the ^^.  Not heard that one mentioned on here before.  You'd have to ask your consultant - are they approachable in that way?   I suppose they want to get rid of the bu55ers to restore to NED (no evidence of disease).   That would be my guess.  If they've built their own blood supply then zap them before they go visiting?

    BTW 12+ years is very impressive.  Clap Thumbsup

  • Hi Kismet


    Just wanted to comment about the adrenal gland situation. I have tumours on both of mine, but I believe they were still working; until my immunotherapy treatment switched off my pituitary gland, which stopped the adrenal glands from functioning. So, I now have what is known as Addison's disease, or adrenal insufficiency. This is permanent, and it means I am dependent on steroids to keep me going.

    It is perfectly possible to live a normal active life without your adrenal glands! Like you, my cancer doesn't bother me, or cause me any pains or discomfort. Having adrenal insufficiency is not without its challenges....I do have to carry an emergency supply of my steroid medication, in case my levels suddenly take a dive, including injections and syringes. I have also noticed an increase in my insomnia, since taking the steroids, which is annoying but manageable ( I'm retired, so don't have to try and get up early in the mornings!)

    So, I hope you don't have to lose your remaining adrenal gland, but just to reassure you that you can manage without it if you have to!

    Hope you are able to discuss this with your medical team.