Hello everyone, I have just been diagnosed with kidney cancer and I would appreciate any advice/support and hear about other’s experiences.

Hi Fiona068            Sorry to hear about your diagnosis, but you have come to the right place.I don,t have the same cancer as you, i have incurable bone cancer and was diagnosed a few weeks ago.I only saw my Consultant once and i was told over the phone while driving home that it was cancer and to expect a oncology appointment and that was that.I had to take it upon myself to sort out who i needed to speak to and what was going to happen.I started with the hospitals main switchboard,found out all the numbers for your Consultants secretary ( she is very useful ) Oncology appointment secretary, Oncology Manager,and any nurses you come into contact with.Always write down their names and phone numbers and what department they work in. Most importantly when you ask main switchboard for these departments always ask what that numbers is  and any extentions numbers there might be.They often put you through and they don,t answer and then you have to start all over again.Always Always leave a message they do get back asap.I never gave up and i am now having a telephone appointment next Thursday this would not have happened if i had not been so persistent.I hope this help,only you know the urgency of your cancer too you so don,t give up all the best Keep Well

Oh forgot yes your GP can be a great help all letters seem to go to them too 

Hi Fiona068,

Welcome to the group although I'm sorry that you find yourself here.

Your GP would be a great place to start.  They are technically the person who coordinates all aspects of your health care and will be informed by all other professionals as to what is going on and why.  They get copies of all reports and these will be attached to your medical file.

When you do see your oncologist you can ask that all letters be copied to you as well and that you also get copies of all other reports including blood test results and CT scans.

Another good place to go for advice is the Macmillan helpline on 0808 808 00 00.  They will be able to offer support but also practical advice about things like employment rights and financial matters including benefits.

You seem to be coping really well at the moment although I have no doubt that you are worried and bursting with questions.  It is not good to get a cancer diagnosis at any time but at the moment it adds an even greater uncertainty.  Feel free to ask anything but you might find others asking for more info before they can answer.

I find the Kidney cancer UK website very good for info about staging and grading and suggest you have a look there.

Kidney cancer is generally slow growing and often symptom less.  Like many others mine was discovered by accident when I had a scan for something else.

I'm sure others will be along soon but as I said feel free to ask about anything.

I look forward to talking to you again,

Gragon x

Thank you ️, I am so sorry to hear about your diagnosis and the way that you heard about it too was not good... I will definitely follow up on your advice re contacting the Consultant’s Secretary and the nursing staff/managers too! I am in Scotland and live very locally to the Hospital although visiting is out at this time! I hope that your telephone appointment goes well next Thursday and I hope that it gives you some answers and support.  Please keep me posted on how you get on if that’s a support to you, Fiona  

Thank you ️, I will definitely call my GP tomorrow to request copies of my reports and contact the Consultants secretary to ask to be added into any correspondence.

My diagnosis came through a cytoscopy and ultrasound being carried out following some not pleasant UTI’s last year...interestingly the Dr on my first appointment said they had nothing to do with the lesion that they found and it was just by chance that it was discovered.  I had to go for a CT guided biopsy a few weeks ago and it’s been about 5 weeks since the first mention of cancer so I have had some time to start getting my head around it all so the confirmation of the diagnosis was less of a surprise in some ways.

i will look up Kidney Cancer UK too thank you and call the helpline number for advice and support.

It’s not a great time just now with the whole Coronavirus situation and as you say I have a few questions about it all! 

Thank you for your support and I will hopefully be able to share more information at a later date! Fiona 

Hi Fiona068, I'm the volunteer community champion for the Kidney cancer group. A belated welcome to the group, tho I think Gragon has covered most of the introductory stuff.

You might also want to add. a bit to your profile, so folk know where you're coming from n to save u repeating yourself.

You'll find this a very welcoming and informed group.

Thank you buttercup01! I will add information on my profile! I have really felt the benefit from being in the group, thanks Fiona x

Hi Fiona068, sounds like your situation and mine are very similar. I've put such details as I have in my profile.

I'm very new to all of this, still working it out as I go along.

One key difference seems to be that in my area (London) all letters from the hospital consultants are copied to the patient, I assumed that this was universal but perhaps that is not the case.

Not sure how quickly things would progress in normal times but there seems to be no doubt that the pandemic is no help.

Best wishes and good look in your journey.

Hi @enjoythesunshinen nwelcome to the forum and the Kidney cancer group

We are ALL meant to get a copy of letters sent to our GPs.

Thanks for adding info to your profile, that's really helpful.

Good luck to you both in that things still progress, albeit differently to usual.

Hi fiona. I was diagnosed January with a renal carcinoma to my right kidney a dark mass on the ultrasound, then CT scan... I had my kidney removed on the 23rd March through keyhole surgery,  3 inch long scars to lower right back, and a 4 inch scar to lower far right, abdomen.. I was up and walking next day... pain on the whole was controlled with pain killers.. home that day later evening. You cannot drive.. for minimum 4 weeks, because of emergency stop.. must inform insurance company.. you will be sent home with medication, and take the consultants advice..I kept myself mobile and to cough/ sneeze hold a pillow to your operated side, to support.. please be assured they acted very quickly in my case and I cannot see any different with you.... covid 19 is out of everyone's control, sadly.  I know your consultant will have looked at your diagnosis and will act accordingly.... kidney cancer as you are probably aware is slow growing.. you are a priority to them.. so be prepared for contact and short notice if needed for  further.. care.  I hope this helps

Regards. 

John.