A good resource is Smart Patients. There are sub forums for all the cancer types. I’m on the kidney cancer forum. If you are not a patient or a carer of a patient they flick you pretty quick. People put their treatment history under their profile and you can easily find someone who has experiences similar to yours. There is some amazing knowledge which has eased my mind a lot. Worrying about kidney cancer is worse than having cancer. If you ask a question you will get a respectful response. It’s US based and they really do lead the way in kidney cancer research. Some people have been fighting since the early 2000’s.
I've been doing these youtube self healing sleep meditations at night. It really helps me sleep better without waking up feeling anxious so even if it doesn't "work", its definitely still helping me heal by helping me rest.
Going for my follow up ultrasound today. Im proud I self advocated but nervous about the scan.
Merry Christmas everyone! I hope it is meaningful and blessed.
Good luck with the scan. I always get nervous, it's perfectly natural. I try and tell myself, there's nothing i can do to change the results and the scan itself isn't painful. If a scan finds anything, then it's better than not knowing whats going on, because you can only deal with the things you know about.
An incidental finding of a possible small RCC is a real stroke of good luck. It might not seem it at the time you find out, but it gives you a much better outlook than if you had found it a few years further down the line when it had started to cause you problems.
I found that regular exercise helped me too. I played football but didn't do much else. When i was diagnosed I decided to go walking every day. I would walk 45 mins every morning and afternoon. I think it made me a bit fitter (and helped prepare me for surgery) but it also gave me some free time away from the internet and in the fresh air to clear my head. Sometimes I would listen to podcasts on a variety of topics I was interested in, other times I would just enjoy the peace and quiet. Doing it regularly also helped me build a routine so I started to look forward to that time to myself as well. I found it useful for my physical and mental wellbeing.
After my surgery I was able to build back up my fitness quickly. I got back to playing full contact football. The surgery hasn't stopped me, so even if it is RCC, you've caught it early, you'll need surgery but if you are otherwise fit and healthy, you can have a pretty good expectation of getting back to where you were before the surgery. That's the thing I find hardest to get my head round sometimes. I had a condition that would've killed me if I left it alone, but I was never actually sick...I had to have this surgery that knocked me back a bit, and had to recover from that, but Kidney Cancer hasn't slowed me down.
Glad to hear that you are doing well.
Its funny how this cancer stuff gets us twisted up inside sometimes. I'm pretty hard core. There are times my wife just wishes I would express more emotions . I think she doesn't realize that when I see or hear about a problem I don't get emotional because I go straight to thinking about a way to fit it.
With cancer sometimes it's out of our control. I have 4 doctor visit next week. I'm waiting to get another PET scan to see if the tumors in my chest has gotten smaller and to see if the treatment is causing problems to my heart and lungs.
I'm to busy enjoying life to worry about things I have no control over. I do everything my health team has asked. Almost 😀
Waiting is just part of life now. I can't wait until the last treatment. It should be middle of February. I can't wait to get the port out of my chest. I can't wait to find out if the treatment works. I can't wait for the first year that I'm cancer free.
But there are many things I can control and now I react to things as they happen.
The OP mentioned that he couldn't afford to go to a private doctor. I totally understand not being able to afford doing what my be the best thing to do. I was advised to take 6 months off of work because I have a weakened immune system and treatment is making it worse. My company pays 58% of my health care. Half of my disability check would go to paying for it. I can't really afford it. Heck I'm already missing two days a month because of doctor visits and treatment. But I also love working. Right now it helps me forget about my health and its a good place to be a positive role model to young adults . I have today off with pay but I'm wanting to go to work 🤪
I'm really curious if we will ever feel like our old self afterwards. I had 2 lumps removed from my armpit months ago. I know they are gone but my arm doesn't feel 100%.
So, I swear my doctor told me my renal tumour was 7mm, but I've just seen the actual results page (she usually discusses it with me but doesn't give the printout, Im never letting that happen again!!!) and theres a 7mm benign angiomyolipoma AND a *6 CM * solid mass!!!!!
So I went back and got all the previous scan results - they all said the same.
Rang the hospital to double check which category waitlist I am on and they said 3, non urgent, could be waiting for a year. But my states guidelines say this size should be cat 1 - seen in a month.
Ive just been to urgent care clinic who gave me an urgent referral so I should hear back within 7 days. If not Im going to go the emergency department and telling them it hurts even it doesn't.
Im angry, the system fucked me over. And let this be a warning - your doctor won't always know what the results mean and might give you wrong information or not explain properly. ALWAYS GET THE RESULTS AND READ THEM YOURSELF!!
It always pays to double check your reports and scans. I had a full body CT scan on October 2021. Got the thumbs up, no new growth. Treatment looking good. In December I broke my right shoulder. An x-ray picked up a 40mm tumour in my shoulder bone. A review of the October scan showed it was there back then, smaller, but no-one saw it. Not the radiologist or my oncologist. These are all private specialists too.
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