stage3/4 and sutent decision

hi All..

I am reviewing this forum, from time, when my mom was diagnosed kidney cancer/RCC.. kind of big one, 13cm, in Dec 2008..

My mom's case:
Just before Xmas, she has left nephrectomy, and part of colon removed (no meta, just was touching the kidney, so they decided to remove 8cm of colon too), no metas in lymph nodes but they qualified the tumor as T3 before surgery  and in reality T4 after surgery (there were small metas locally in 'net')

Surgery did not go smooth, it went the worst possible scenario,
since colon did not rejoin after this surgery, and my mother
got sepsa, and two more major surgeries, which almost killed her/sepsa (was in coma/respirator for 10 days, lost over 10kg, when she was not eating for 3 weeks)

She recovered from that, but still with few side effects after
surgeries (half paralised left foot, and colon stoma)

At present time, she feels OK, is recovering pretty quick,
but due to open wounds (drainage left after surgery)
she won't get chemo (sutent probably) until all issues are closed.
(if drainage does not close itself /there is stil chance for it/,
she will have another serious surgery)

Actually no metas were found in her body yet, my mom feels OK.

I know that Sutent can have serious AEs/side effects,
so I would like to ask if is it worth those side effects, and
worsening QOL surely? Or should we rather wait, until any metas
are detected (sooner, later or *maybe* never? )

Hi - sorry your mum had such a bad time in surgery. Do I take it, however, that they got all the mets out in that surgery? There are none others detected anywhere else? (Have you had a head/neck scan, by the way, as, sadly, RCC can go to the brain, and small mets may not cause any neurological symptoms, but can be detected by CT/MRI scan)

If your mum has no mets, and is effectively NED (no evidence of disease) then going on Sutent or any other drug may not be necessary. From what I understand, no one yet knows whether these drugs can prevent mets arising. One argument that they can't is that Sutent, at any rate, (and Nexavar too I think) work by blocking the growth of the blood vessels that tumours need to feed themselves with. But if there are no tumours (ie, mets) then how could Sutent work??

However, I believe there may be trials runnign to see whther there is any point taking drugs 'preventatively' so to speak, to keep mets away. So the jury may be 'out' when it comes to this decison.

(Sadly, I understand that NED really means NVED - ie, no VISIBLE evidence of disease - as 'micro-mets' can be present in the bloodstream and other tissues, that are way, way too small to show up in scans, but that can, at some point, start to 'nest' and grow, having been 'shed' by the primary tumour long before it was removed, and lying 'dormant' so to speak, waiting for the right moment to recur)(which can be YEARS later, as many patients testify - something like 20 years is, I believe, the max!)(which is why every Stage III patient MUST be regularly scanned for the rest of their lives to check for any sign of recurrance taking them into Stage IV)

If you mum DOES have some mets still, that didn't come out during her traumatic surgery, then going on drugs would definitely be an option worth considering, at some point, even if not straight away, as you say.

Yes, Sutent, and all the other new RCC drugs have side effects, but they vary in intensity and severity quite widely. Some are dangerous (eg, rising blood pressure), some merely 'horrible' (eg, mouth sores making eating painful). The general 'rule' seems to be that not everyone gets all the side effects, everyone gets some of them, they can vary in intensity not just between patients but also between cycles (eg, one can be worse one cycle and better the next, etc). There is, so I understand, NO association between side effects and efficacy - ie, not having side effects doesn't mean the drug is or is not working, and vice versa.

All the very best, and if you want to hear yet more feedback on the decision facing your mum, do join the excellent kidney-onc email list which has a vast amount of collective experience to draw on. You can join  on http://cancerguide.org/kofaq/

Best wishes, Julie.

Hi Julie, many thanks you for your reply

During surgery, left kidney and all discovered mets were removed (1 distant met size 15mm in fat tissue). Histopatology of kidney/renal was: Carcinoma claroceliulare Fuhrman II. Tumor size 10x7x5cm located in kidney 16x11x7cm . Renal pelvis - Infiltratio carcinomatosa. Embolius carcinomatosus in lumine venae venalis et emboliae   carcinomatosae in lumine vasorum.

Lymph nodes were clear, no mets there (at time of surgery Dec2008)

but tumor invaded vena cava, I understand, based on histopatology results.. (which would qualify as T3b, but due to distant met it is T4, I guess)

My mom few weeks ago on had Xray of lungs, no mets there and not mets in spine/bones in lungs area. She did not have CT / MRI / PET recenlty. Had just CT of kidney/stomach area, right after 1st surgery, due to complications, they were preparing her to next surgery based on CT scan)

So we had NVED in my previous opinion, as far as we can treat this scan as enough (after your reply I know we can;t) .. Next move wil be then CT / MRI / PET.. All trouble will began, if mets are discovered, but for some reasons (funding, I live in country which does not refund Sutent automatically) my mom does not get any treatment.. 

Hard thing, is that my mom is not quite aware, what happened to her, and what the future is..  She feels great now, thinking that might be behind her.. That would change, and her perceprion, spirit would change, if there is detected anything.. Well.. I think we have no much choice.. CT/MRI of the body, and next steps if necessary.. I am not a doctor, but I spoke with oncologist, and he had no douts on necessary treatment/ Sutent.. but I had doubts.. due to NVED