New to this and trying to support my dad

Hi everyone,

I'm new on this and it is my dad I am trying to support.

My dad started with pain around the kidney area at Christmas 2021, the doctors said it was kidney stones. He then had a scan, to which the person doing it went and got someone else to come and check while do it and said its not kidney stones but there is a mass.

After more scans and tests we where told it was kidney cancer, only then to be told its not kidney cancer when another specialist looked at scans and results. They then have said this tumor is basically in the middle of his organs and pushing against everything including his aorta and diaphragm. This is also growing quickly. They said they are not sure which organ/ area it is attached too but did give a name of the cancer but I can't remember the name of it.

He has had a procedure done the kill/ freeze some nerves this tumor is pushing on to try and help with the pain. He is also on a lot of pain relief medication but seems to be having more and more bad days.

We went to an appointment this week that was meant to be discussing the options of what can or can't be done but it didn't go that way, they threw a curve ball in there.

At this appointment they turned around and said they don't know was cancer is it as they haven't seen this before! 

We of course are all shocked and got the question of how don't all the specialists involved not know what this is!? 

They are wanting to do more tests to try and figure this out. Which is more waiting.

After we have been told several things and finally thought we where moving forward and knowing what can or can't be done, this info has knocked us all and now feel we are going backwards. We just want to know what it is and what can or can't be done.

Is this normal to be told different diagnosis?? And for them to turn  around and now say the don't know??

We sadly have had a few family members that have passed away from cancer and sadly when it was found it was always too far along to do anything, so this feeling Iikes it being dragged out and going backwards maybe losing time.

During all this so far I have been feeling numb but now I'm starting to just feel angry. We understand there are thounds of people they are treating and there are waiting times for results and the NHS are great. But we just feel we are not getting anywhere with this.

Any advise at all I would be so grateful for, or any info on the different diagnosis and then not knowing would also be great.

Thank you

  • Hi  and a warm welcome to the Online Community although I am so sorry to hear about your dad’s ongoing diagnosis and the challenges pinpointing his actual type of cancer.

    Actually this can happen more than you would imagine. It took over a year to eventually identify my type of cancer as it took 6 biopsies to eventually find the actual cancer cells. The system will keep investigating and let’s look for a clear diagnosis to be found soon.

    Once you have a clear diagnosis you can then have a look through this list where you will find all our many dedicated cancer support groups listed. These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and talk with others who are supporting family and friends on their journey.

    When it comes to the practical and emotional challenges of supporting someone you may benefit from joining our general Family and friends group where you will connect with others supporting family and friends

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    Our Cancer Nurse Team in our Ask an Expert section may be helpful but do allow a few working days for a reply.

    Always around to help out as best as I can.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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