Hi again. Fab stuff from Rose (as usual!) (Rose runs a specialist RCC site in the UK, and I agree that with the vagaries of state-funded medicine, whether the NHS here in the UK, or the Canadian version, what you can or can't get 'free' by way of drugs is different from the USA).
I agree that it's not customary to do a biopsy of the primary on the kidney, simply to whip out the kidney and then do the biopsy on the 'dead' tumour afterwards, to check what grade it is is (cancer grade is the Furhman grade 1-4, with 4 being the most aggressive cancer - ie, the most mutated from your normal cells) (I believe once cancer is metastatic, as yours is, then it's usually 3/4 by then)(the 'older' a tumour is, the more likely it is to be a higher grade, as it's just gone on mutating and mutating usually).
Also, pathology will reveal the exact type of RCC you have. Around 80% of patients have the 'bog standard' clear cell type, but there are various rarer subtypes, which have their own specialities, and may affect treatment choices and eventual outcome, so that is something the docs need to know about the cancer you have.
I'm very glad you now have a surgeon/onc who is positive and 'aggressive' (in the right sense of the word!) as this is vital in cancer treatment I believe, and doesn't always happen (yes, careful line between being optimistic and over-optimistic...).
However, have you been given an estimate of the size of the primary tumour, and where it has grown to, and, above all, WHY they won't just operate straight away without putting you on drugs first? My husband had a massive tumour - the size of a football - and it was growing into his liver and diaphragm, but it all came out successfully, though it was so large. So 'big tumours' can be done. Where they are usually not done instantly is when they are growing up tricky bits, like major arteries, or if the patient is externally ill and weak by then. But the latter is unlikely for you, since you say you weren't feeling ill (neither was my husband - the DX (diagnosis) hit us like a truck out of nowhere!).
One thing that is often said about surgeons - "they say things can't be done but what they mean is they can't do it - which isn't to say another surgeon would say the same!"
I would agree, therefore, that the surgeon must give you compelling reasons why the tumour should be shrunk first, because, as Rose says, this is starting to use up your 'allowance' of Torisel (which, like all the new drugs, does have a finite working life, though this varies from patient to paitent as to how long, or indeed, whether, it works).
I'm sorry to hear you have mets to the lungs, but this is, sadly, very common with RCC by the time it's DX, as early DX with RCC is usually what is called 'incidental' - ie, there were no symptoms, or none that suggested cancer, and the tumour is found only by chance, often when investigating something else, eg, somethingy gynae, or an appendix, or even a broken bone sometimes!). Again, have you been told how many lung mets and what sort of size they are?
The reason to ask is not just because it gives you an idea of how long RCC has been 'brewing' inside you, but becuase if they are not many, then they may be treatable either by surgically removing them, or freezing them or various other kinds of treatment along those lines (eg, cyberknife). Again, given the 'Canadian NHS' some of these treatments may have to be paid for privately, but it's worth checking out.
Also, a general 'word of warning' - it's quite common, so patients find, that each specialist sees the world in their own terms. A surgeon thinks the knife is the cure, a phsyician wants to put you on drugs, a radiologist wants to irradiate you, etc etc (By the way, overall, RCC is 'radio-resistant' - it needs a large blast to kill it, which is why standard radiotherapy is usually not used on the tumours - but there are some specialist kinds like gamma and cyber knife etc).
Many people (eg, on Kidney-onc) prefer, if they only have a few lung mets, to get rid of them by surgery or radiation, rather than drugs - again, saving their 'drug allowance' for later, if needed.
Because these drugs, like Torisel, are so new, sometimes one suspects that the docs are very keen to 'try them out' (!) - and, quite genuinely, are very relieved that they are there to use in the first place.
It's always worth checking all your treatment options, and one of the things that makes that difficult in cancer is that the moment you are DX you are on board an express train - rushed into surgery, rushed on to drugs, etc etc, all for the best of reasons (ie, making up for the time preciously lost while the cancer was growing pre-DX), but that might mean that you feel out of control, and wonder afterwards whether the best decision was made.
Additionally, as Rose mentioned, there is a treatment for mRCC (ie, RCC that has spread to distant organs, like the lungs), that is the 'old fashioned' one, pre the new drugs like Torisel. This is Interferon (the 'weak' version, so to speak) and HDIL2, which is the 'strong' version. Both are 'hard to tolerate' esepcially HDIL2, but a lot of patients do try HDIL2 first, after the primary is out, to tackle the mets, for the following reasons.
HDIL2 is, so far, the only treatment that can offer the hope of a clinical 'cure' - ie, to get rid of the cancer for good (or for long enough to have a normal enough lifespan). That is GREAT.....BUT BUT BUT, the downside is that, apart from the fact that it is a REAL TOUGH ordeal to get through (you need to be in hospital and it is NOT fun to endure the side effects!)(and it can be too dangerous for some patients, who are taken off it), it ONLY WORKS for around 10% of people. No one really knows why, so there is just pot luck to it.
A lot of RCC oncs now, given they have the new drugs (that extend life, but don't cure you...as yet, at any rate, so far as anyone knows), tell patients not to bother with HDIL2 as it is so tough to take, and offers such a lousy chance of working. But, some patients do say 'nope, I'll give it a go anyway', even given the downside.
A reason for trying it first, after surgery, is because what studies have been done (not many, as the new drugs are so new, only a few years old), tend to show that HDIL2 has best chance of success taken BEFORE the new drugs, and, indeed, that it may even improve the working of the new drugs themselves. Conversely, there is a bit of evidence accumulating that taking the new drugs first and then trying HDIL2 may reduce the chance of HDIL2 working.
There's something else to know as well. HDIL2 can't be taken if you have tumours in your brain, because it becomes dangerous (and ineffective). So if you do try HDIL2, you MUST have a head scan first.
In fact, I would strongly recommend you have one anyway. There is, after all, no good reason not to know if you have brain mets, because the earlier you find them, the easier to tackle.
You may have no symptoms of brain mets, but doesn't mean they are not there! If you DO have symptoms, they may be any or all of the following (which is not an exhaustive list) - visual disturbances (my husband had visual migraines for a bout a year before his DX, which were not seen as dangerous, though they were of course signs of his brain mets!), cognitive difficulties, headaches, dizziness, trembling, tingling, seizures, all those sorts of things. PLEASE tell your onc if you have ANY of those, and insist on a head scan (as I say, I'd insist on one anyway)
Don't panic if you DO have brain mets - they can be treated by surgery or radiation, and there is some evidence that possibly the new drugs are capable of shrinking or killing them as well.
I'm sorry to throw so much at you, and I can well remember the HUGE learning curve I had to go through when my husband was DX - you feel like your brain is going to fall out!
I would print out all these replies, and read them again at your leisure. Also, check out another site http://www.kidneycancerresource.com/index.php/Main_Page
which is also very informative.
All the very best, and do ask more questions if you want! Julie.