Dad with Papillary Renal Cell Carcinoma type 2 very confused

Hi all,

This has been a difficult journey so far as we have had several diagnosis and still confused.

My dad started with pain in December 2021, he was first told it was kidney stones. When he went for a scan for it, the person doing it left the room to get someone else to check it. They then advised that there are no kidney stones but there is a mass/ tumor. 

He then had more tests and scan and was told this was kidney cancer until another specialist looked at the scans and results and said no it wasn't kidney cancer and it was growing somewhere from the lining of the organs.

So he then went to see this specialist who did more tests and scans. He had an appointment which was meant to be to discuss what can or can't be done only for a curve ball to be thrown in there. They turned around and said they now didn't know what cancer this is and needed more tests.

After more tests we have been back today and they have said that they now know what cancer it is and it is Papillary Renal Cell Carcinoma type 2 and they said this is a rare cancer and this is why they didn't know what this was before.

There are Renal Cell cancers that are "common" but they have said this is Papillary Renal Cell Carcinoma is rare and its also he has type 2 which makes it aggressive unlike the type 1.

This is now another diagnosis, which in myself I am finding hard to accept with having the other diagnosis before. But it gets even more confusing.

The specialist today who has said this is Papillary Renal Cell Carcinoma type 2 he does not think this is growing from the kidney looking at all the scans but the biopsy has some signs in it showing it is connected to the kidney in some way but they don't know how.

This tumor is pushing against everything and has caused a hole in his diaphragm, it is also pushing on his aorta along with other organs. They are unsure if this has grown into his aorta or is attached to it. They have also said they don't know what other damage this is causing to other organs which it is pushing against/ attaching its self to it.

They now want more specialists involved from different areas as this is affecting different areas, and for them to work together to come up with a plan of action.

They have said today about them wanting him to have surgery and cemo.

This is all very confusing and they said they can't give us definite answers as its rare so there isn't a lot of info/ studies on it, and also some of  the questions might not get answers until surgery as they don't know what they will find until they are in there.

I really hope iv managed to write this down to make some sort of sense. 

I am very confused with all this and find it hard to accept this diagnosis of a rare cancer because we have been given different diagnosis before and also that thought of "this can't happen to my family" if its rare it wouldn't be my family, if that makes any sort of sense at all.

Has anyone else been through this? Know about this cancer? Or any advise at all?

Cheers 

  • Hi

    For someone who has been supporting their loved one through a long and tortuous diagnosis process you have managed I think to produce a fairly detailed and clear trail of just how complex a diagnosis can get - I for one totally related but that is perhaps another long story.

    We have a page - https://www.macmillan.org.uk/cancer-information-and-support/rare-cancers all about rare cancers - on the one hand it can make life very difficult - finding anyone with the same or similar diagnosis can be challenging but on the plus side for my wife at least she tends to see one of the leading oncologists in the country because she is "interesting".

    My wife never wanted to know the answer to "how long?" and I struggled with that. She is clearly much more sensible that me though because six years down the line her cancer is stable and she is in good health.

    What helped me most was a living with less stress course. Trying to appreciate what we have rather than worrying about the future is very helpful.

    <<hugs>>

    Steve

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