I’m new, and so’s my kidney cancer

FormerMember over 5 years ago

3 replies
23 subscribers
1070 views

Where to even begin at 02.20 on another sleepless night.
I just joined the site, not in a million years did I think I’d be here.

At 55, after a full on career, I was so looking forward to retirement. Just a gut ache, feeling a bit sick for a couple of weeks. Probably just a bug, turns out it was just a bug. But the associated ultrasound that went with it started a whole new chapter.

11cm kidney mass found in September last year, CT scan showed a clearer image. Knew it was going to be a bad consultation when the consultant asked “is there any reason you've come on your own today”.... oh dear.

We need to take that kidney out he said. 7 hour operation in December, unable to remove, tumour is attached to the liver also.

3 week wait for biopsy results... non diagnostic.

CT guided renal biopsy end of January.

Results in, clear cell renal cancer, stage unknown, oncology appt to follow.

Confused? Yes, no other symptoms at all, full of energy, no weight loss, eating fine. How can this be, the hopes of a wrong initial diagnosis are dashed it seems.

How can the consultant say it’s cancer from a CT scan? How can the operating consultant say “its bad, I don’t think chemo will shrink that” from looking at it up close and personal?

How can he say 1-4 years, no more than 5 by just looking at it?

How come every time I tell him I feel fine, he gives me that awkward look of “yes, for now you do”

Maybe he’s seen it all before a dozen times. But it’s never been me before...... but it is now.

So, that’s me and my story of why I’m here, on another sleepless night

gina62 over 5 years ago

So sorry to hear your news, I have recently been diagnosed with breast cancer I have PKD and regularly have blood tests I also had no signs as white blood cells etc were normal. A lump in my breast appeared overnight no other signs of the breat, was a shock. X

Gina

Thehighlander over 5 years ago

Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about the journey you are on. Many folks on the Community will totally understand where you are at right now.

I remember back to late 2013 being told that if the treatment they were planning did not work I would have a few years......so far so good.

A cancer diagnosis can bring a lot of stress, confusion and many questions on all the family but talking with people who are on the same journey can help a lot.

Can I first direct you to this link to our very supportive Kidney cancer group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

Can I also direct you to our Living with incurable cancer - incurable patients only group as this may help you unpack some of the news you have been given.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

All the very best.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 5 years ago in reply to Thehighlander

Morning, thanks very much for your detailed and informative reply. I’ll action that today, it’s a better day today after an uninterrupted sleep for a change

Thanks again