Hi Catty,
Good to hear from you, and sorry to hear it's been a bit of a rollercoaster. The physical recovery from surgery will take a bit of time, you had an organ removed and some pretty big surgery. The kidney took up a large space and your other organs need to settle and your body get used to how you feel. It will get better though, so give it time. Ask your doctor if there are any more exercises you should be doing, or go see a physio as there may be simple non-strenuous exercises that could help. I was getting tummy pain if I did too much, lifted something too heavy or carried something not very heavy, but for too long, etc. It was really easy for me to do too much and get a bit of pain. The pain also wasn't immediate, so I could find myself sore hours after doing more than I should've.
Stages and grades of tumours are two different things. Stage is about location/spread/size with kidney cancer. Grade is about how aggressive it is, how quickly it is growing. They can only really tell this accurately by doing a biopsy of the tumour and doing tests on the tissue. If they said is was Grade 4, then it was aggressive, growing fast...so you've had surgery to remove the tumour, this is a good start.
Whether it has spread outside of the kidney and how far it has spread determines the Staging. This is important in terms of what you should do next. Right now you don't really know what to do next as you don't know if you have any other small secondary tumours, or if you are all clear. You can do a full body scan which should pick up any spread. This scan helps you either put your mind at ease, or get a plan in place for further treatment if required.
I had a Stage 1a tumour, so smaller than yours, and Grade 3, so less aggressive than yours, but still more aggressive than it could've been. I decided to have the full body scan to put my mind at ease (and give a baseline for future investigations.) If I were you, I'd be asking for that to see if there is anything else there that isn't showing any symptoms just yet.
The scan I had was an FDG PET scan. They inject some slightly radioactive sugar solution into you, wait an hour while your body absorbs it, then scan you in a machine that looks like a CT scanner. Fast growing cells absorb more of the sugar, so they show up on the scan. It only takes an 1-1.5hrs and you can go home straight after, so if you want to have one, maybe phone your specialist can provide a referal (although I have no idea if you can use a referral from a doctor in one state at an imaging provider in another state??) I suppose what I am saying is, I wouldn't necessarily wait until your next appointment to discuss this with your doctor...you mentioned it's in a few weeks, so if you are in a location that has access to imaging, maybe talk to your specialist about getting imaging done. You might even find the doctor suggests waiting until your wounds heal a bit better for the imaging as healing tissue can also light up on the scan (my flu vaccination showed up as a hot spot on my upper arm!)
You're still recovering, but it will get better. You don't have to sit and worry in silence, so if you have concerns or questions, phone your doctor, even request a telephone appointment if they are difficult to get a hold of. Peace of mind is hugely important, so if you'd feel better knowing more, go find out. Another tip is, write down the questions you want to ask in advance. I did this, it seemed so simple but helped me make sure I got everything out of my consultations. The other thing to do is request copies of imaging reports from any providers you've been to. They should send them to you. You never know...the appendix might've been mentioned on a scan report! The flip side of that is you might feel better seeing, Pancreas OK, Liver OK, Gall bladder OK, etc.
Good luck and try not to worry (I know it isn't easy!)
