Recurrence of rcc

I just wanted to say welcome to you both, and that I am sorry to learn of your husband's long-standing kidney problems. What scans and tests has he already had? I would ask to see the scan yourself (my hospitals did not offer this, and a long sequence of misdiagnosis/stress was instigated), and get the consultant to explain everything about it. Make sure that you have a notepad with you, of course, as it is easy for one of you to miss something or say afterwards, "I thought he mentioned...", and very hard to take it all in if you are in a state of shock. Ask for copy of any document. You can aso ask to see a Cancer MacMillan nurse, if the hospital have one, as they are excellent for explaining things and can take more time than a consultant. It seems that you have already been given information and know the terms, so I just want to wish you the very very best of luck with the appointment. Please keep us posted as to results and the treatment. xxx Penny

Hi Penny

Thanks for your welcome and advice, its much appreciated. Colin had a routine CT scan in April which highlighted the tumour. He has an allocated MacMillan nurse who is hospital based but unfortunately he hasn't had much contact with her (his choice).

We have a lot of faith in his consultant who explains things clearly and also shows us his results/scans - I think we are quite fortunate there!

I think that I/we are just really anxious about the consultation and want to make sure we're fully prepared (if that's possible). I'll certainly be back to let you know the outcome.

Thinking of you Penny and hope you're doing well at the minute.

Take care, Lin x

They seem very reluctant to talk about it! However, you seem to have everything sussed, you have a supportive and proactive consultant, and you seem to be fighting your husband's corner with him. All very good signs! I would mention that you yourself can see the Cancer MacMillan nurse on your own, as they are for families as well, if at any stage you feel you need someone to offload any worries onto. Well, good luck, and keep us posted! By the way, if you want to know how I am doing, I am currently blogging under the title "Choose and Book - OK?". Bring your sense of humour with you.... Lots and lots of love to you both xxx Penny

Yes, I have heard that its a man trait! I am definitely in his corner and its really good to know that I can access the MacMillan nurse myself, thanks for the info - I'm probably unaware of that because Colin has so little contact with her.

I'll have a read of your blog later tonight. I'm a little apprehensive about using the site but everyone sounds so friendly I'm sure I'll get used to it before long.

Take care, Lin x

You'll quickly get used to the site, although it seems a bit of a maze at first. The Chat Room is brilliant when it works but can sometimes behave badly and throw us all out, so just climb back in if that happens! I hope that you continue to use What Now, and that it giveds you the emotinal support and feeling of not being the only one we all need at the start of our cancer journeys. You shouldn't need my Choose and Book blog if your consultant is a good 'un! Lots of ove, and look after yourselves xxxx Penny

Dear Lin

This whole CancerBackup site is wonderful, but it IS very general - which is, obviously both a great strength (there's a home for all of us!)(plus it can deal with issues that affect all cancers patients, such as travel insurance), but for the same reason, can only be limited in how much detail it can go into for each specific cancer/condition.

For that reason I mean no insult whatsoever to this great site (and the more support sites the better! It's isolating enough to be a patient or a caregiver or family/friend in these sad circumstances, and these online sites are a fantastic way to combat that and spread really useful knowlege and experience)....however, may I also suggest you take a look at a site that is specific to kidney Cancer, which is KCUK (Kidney Cancer UK) which has a wonderfully detailed message board as well, with a fantastic amount of KC specific information, and a wealth of really heartening 'tales from the front line'.

Although I am a real 'newbie' to this frightening world of cancer (my husband, a couple of years older that you, was last month diagnosed with mRCC), I have already learnt so much from KCUK, and taken great comfort and reassurance from the experience of others. I would not be at all surprised if you found just the information you were specificially looking for about your husband's particular circumstances.

I'd also recommend the US cancer support site, Cancer Compass, which, like CB here is a general site, but, simply because of the hugely larger population in the USA, each cancer section, including the message boards, has (sadly!) so many people on it that, again, I expect there is bound to be someone on the Kidney and Renal message boards (two separate boards) there who has familiarity with the painful shoes your husband is currently wearing.

Good wishes, Julia

Dear Julia

Thank you so much for your reply and comments - they really are very welcome and much appreciated. I'll have a look at the sites soon - it's good to hear that you have benefitted from them. Please let me know how your husband and yourself are doing, I wish you both all you wish for yourself. Take care, Lin

Dear Lin

Hope you find them useful! All the very best to you and your husband, Julie2 (I'm not sure why I'm being called 'you' on this site! So far as I know I signed in as 'Julie2' as it was the only variant of my name not taken, but it doesn't seem to register! I did try 'edit profile' but it didn't seem to give me the option of not being 'you'!!! Oh well, worse things to worry about right now than a weird log in!!!)

Hi, Julie2

We see you as Julie2 but you can only see yourself as you! I found it confusing at first, too.

Welcome on here!

Pat

Oh, glad I'm not 'you' to everyone else! Seems very rude. :)

Thanks - Julie