Urothelial Carsinoma - Primary cancer in the lining of the kidney

Hi ,

I'm sorry that you have had to join this group and that you believe that there have been major failings.  Obviously you must do what you think is right for your brother but there is no reason that you only have to do one thing.  You can go for a second opinion as well as legal advice.  I would imagine any legal advisor would want a second opinion anyway.

Obviously I am not medically trained and do not know your brother's exact situation but would advise you not to believe that everything is hopeless immediately.

Some kidney cancers are difficult to treat, but the most common ones are very treatable but not curable.  Many people live for years after being diagnosed with cancer once they get onto a treatment that works for them.  Similarly bone mets can usually be treated with radiation and bone strengthening treatments given.  I do not have bone mets but have been on my first line treatment for six years so far and others have been in treatment for longer than I have.

I would be pushing to get an appointment with the oncologist asap to discuss exactly what type of cancer it is and what treatment options are being considered.  Your brother might want to write down his questions before he attends the meeting and take a pen and paper to write down the answers.

Kidney cancer can be one of a number of types (mine is the most common Renal Clear Cell or RCC).  Different types respond differently to treatments.  The bone mets might be treated differently to the primary cancer

Once you know the type then the treatment options become clearer.

Whist I find this forum the best for peer support the Kidney Cancer UK site I believe is better at detailing the types for kidney cancer and the potential treatments.  It also helps explain staging and grading better which the oncologist might also mention.

I would suggest that your brother advise the oncologist that he wants to receive copies of all scan reports and blood test results as well as being copied into all other correspondence (e.g. to his GP).  They do take some interpreting to begin with but the more familiar you become with the terminology the easier it gets.  You can ask for copies of the scans themselves and you might need them for a second opinion.  I do not bother with these personally as I cannot differentiate what I am looking at on the scan.  I am sure if you could get the oncologist or your GP to take you through them a few times you could learn to interpret them but I have not bothered.  You may have to pay a small fee for the copies of the scans.

At the moment face to face appointments are limited but you should be able to insist at this stage.  Where I attend you can also take one person in for support when you see the oncologist although they have to wait in a different area whilst you have any other tests such as weight, bloods etc.

As a matter of course you should be given contact details for various people including out of hours oncology and a cancer care nurse.  I would try to get an e mail address as well as I find that easier than trying to catch the nurse when they are available to take a call.

I hope that you have found this helpful.  I hope more that your brother's pain is now under control, the hospice teams tend to be the experts at this.

Once you know what the next steps are then it becomes easier to deal with.  Until then it is difficult to deal with the anxiety.

I can highly recommend the Macmillan helpline on 0800 808 0000 for both emotional and practical support.  They helped me initially deal with understanding my insurance claim, my employment rights, applying for early retirement on medical grounds and benefits entitlement.  They assisted in working out what to tell my young son and helped me clarify who else I wanted to inform.  Even if you are not sure what to ask it is worth calling them as they have lots of experience of what you are going through and can help in ways you did not think of.

Please let us know how your brother gets on or indeed encourage him to join the community himself.

Wishing you and your family all the best, love and hugs,

Gragon x

Hi Gragon

Thank you for your reply, I have today been contacted by the  senior nurse/clinician to offer me an appointment, on behalf of my brother, with the Oncologist who will be treating him.  This is a positive move so we will have more information.  Thank you for the positive advice, this is really supportive.  I'll let you know how the appointment goes.

Kind regards

Bronzie Mischief Maker