Shock diagnosis of Kidney cancer at 35

Dear Elle

First of all, I'm so sorry about the DX. It's shocking and terrifying and hits you like a truck. We went through it earlier this year when my husband was DX with RCC.

Second, the good news - it sounds from what you say, that the tumour has not spread to distant locations, ie, it has not metastasied, and there are no cancer nodules elsewhere, such as in the lungs, lymph nodes etc. That would make you pre-Stage IV ( which is the metastatic stage). Anything below Stage IV is definitely 'good news' (relatively speaking.)

If the kidney/tumour comes out clear, then yes, for the moment, you will, I believe, be 'done' with it. But, as you say, the next, most important thing, is to be on the look out for recurrance of the cancer.

I'm not quite sure why it happens - whether it's because minute fragments are already 'out there' in the blodstream, or whether beause whatever kicked off the cancer in the first place can kick it off again, but yes, sometimes the cancer grows back in the renal bed (where the kidney was) and/or develops metastatic nodules.

Now, I agree it's hard to find stats, but I believe (though please don't take this as gospel) that recurrance occurs around 50% of the time. So, if that's ture, that's not too bad, odds wise. However,whtever the odds are, what is absolutely vital is that post-op you are checked regularly and thoroughly. Sometimes you can be NED (no evidence of disease)(believe me, you'll pick up the jargon very quickly!) for years and years and years, way past the five year 'you're cured of cancer' mark. Do not be fooled into false complacency (well, not you, but your oncologists!). This beast can strike again, even years later, which is why, even though the checks may become more infrequent (eg, maybe annual, rather than half yearly), they still need to be done.

If the cancer does recur, then you have a recurrent Stage IV, and then it's a 'race for life'. Bottom line - the fewer the mets, the better your chances. Which is why regular checking is essential, to spot any mets the earliest possible (and I don't know just how early IS possible - I believe they are working on identifying blood markers so a blood test can spot them, rather than only relying on scans).

If you do get recurrance, then the treatment is most likely to be the new kidney drugs (the ones Nice don't want us to have, and would prefer us to shove off and die and stop nagging....). The deal on them is that Sutent/sunitinib works for around 70-75% of patients, and of those who respond, around half show no growth of the mets, and the other half show met reduction. There are well documented cases of people (mostly in the USA where Sutent has been used since the trials a few years ago, c 2005) becoming completely NED from Sutent. For you, the good news is that I THINK (again, please don't take this as gospel) that recurrent Stage IV tends to respond better than when you are DX stage IV (ie, you have both the primary tumour and the mets, before anyone knows you have cancer).

For those whom Sutent doesn't work for, the other three new drugs might well, plus, next year, yet anotehr drug (Evarolimus) is due to come out of trial, having shown very good results in trial, so that should be 'on stream' when and as you go recurent (which, of course, you might well not!).

Finally, some oncologists are considering whether to treat Stage III patients with 'adjuvant therapy' - ie, putting them, after the operation, on the new drugs 'just in case' - ie, to prevent any cancer getting going again after the primary tumour is out with the kidney. However, I believe they are in two minds about this, so this is something you may want to ask your oncologist, or do some research on. One 'anti' argument is, not only are the new drugs expensive, but they have side effects that can take down your quality of life, and though the side effects vary a lot from person to person, I guess if you get them badly, and it's only adjuvant therapy 'just in case' maybe it's not worth it??

Overall, however, two things - firstly, if they have caught this before it's gone metastatic, that is good, good news for you! Secondly, there has, litterally 'never been a better time to get kidney cancer'! These four new drugs - hpefully five from next year - are the first big breakthrough in kidney cancer therapy for thirty years, and have rewritten the stats. There are people in the states still alive on Sutent, three, four, even close on five years down the line. In other words, the power of Sutent has not yet been 'maxed out'. OK, not everyone does so well, that's true, but the potential is there. This is why UK cancer patient are so incensed at Nice (and, if you've time, please do write in to them to protest, we have until 29th August to do so)

Although you are probably in mental meltdown, right now, not to say emotional metldown, with so, so much to take on bord, and all the 'fast track learning about RCC' (by the way, you need to check with your onc if you have 'bog standard' RCC, or one of the rarer variants, though they may not be able to tell until the tumour is out and they can do their histology on it), I would point you to four excellent sources of information for RCC patients (apart from what you find on the genreal cancer sites like this).

KCUK - Kidney Cancer UK - do check this out if you haven't. It's on:
http://www.kcuk.org/vbulletin/
(Like I say, please do read the 'Protesting to Nice' threads, to see how to do it)

Kidney Cancer Resource: http://www.kidneycancerresource.com/index.php/Main_Page

Two US sites:

Cancer Compass on http://www.cancercompass.com/message-board/cancers/kidney-cancer/1,0,119... (check the Renal cancer board there as well as the kidney cancer one, a lot of overlap)

Kidney-onc: A great emailing list which has loads of people on it, and pots of experience. Join via http://cancerguide.org/kofaq/

I also recommend a journal I found which is written in (mostly!) lay language, and interviews leading RCC oncolgoist in the USA. It's on http://www.renalcellcancerupdate.com/default.asp

All the very best, and my last word is this: The only thing worse than knowing you've got cancer, is NOT knowing you've got it...

Now the beast has been discovered, you can start to beat it! Better by far than that it went on lurking inside you.

Take care - it's a real rollercoaster from now on in, but you will find so much support, both here and on the other sites. (Oh, try Macmillan 'Share' as well - very good)

Best, Julie

(I'm trying to disapear on holiday, so may not post for a while!)

Dear Julie,

Thank you so very much for taking the time to respond to my post. So sweet of you to be so thorough in your response and even though no-one can predict what is around the corner - I feel so much more hopeful and positive after reading your reply. I have of course thought about nothing since my diagnosis and have read untold literature but I feel so much more confident as I believe my tumour has not spread to another organ/part of the body so 50/50 chance of recurrence is much brighter than the bleak outcome I have been worrying myself with!

Hope you have a fab holiday and maybe we can catch up on your return.
Again - thank you so much.

Elle x

So sorry to hear about your illness. The thing I would say with statistics is, if they are bad, don't necessarily believe them! I was told that I would 100% die within 3-4 months of May 2007 - and I am still kicking around now with no significant onset of my tumours. So there is ALWAYS Hope, and you have to remind yourself of that. I do keep to a sensible diet with no alcohol (boo hoo, and difficult at first!), and try to exercise regularly as when I got chronic fatigue during chemo and ended up lying in bed about 22 hours a day, my body really began to seize up. I'm wishing you very good luck with your op. Please let us know how you get on. Lots of love and hugs xxxx Penny

Hi elle

by the time u read this u will have had the op and hope all has gone well - not a great op - been ther in may took out my right kidney and in august took out part of my lung - painful ! my back looks like motorway with no cars ! - but i'm still here !! - just be careful about chemo my oncologist told me - which i was very lucky that my tumour on the lung was small - so was reluctant to give me chemo for that reason - but and heres the big but if you only have one kidney it can be very risky cos chemo affects all parts of your body and u could be in big trouble. I wish u well.

Big hug for ur recovery - we all need one at times

Ruth xx