January 2022
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!!
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January 2022
So there was a royally bad cock up with my specialist referral that I discovered today. I was referred as category 3 (seen within a year) when it should have been category 1 (seen within 30 days). I should have seen a renal specialist a month ago about a most likely cancerous tumour. So I went to urgent care and they sent off a new referral for within 7 days, but I'd like to make a complaint about it because its not acceptable. My question is, who am I complaining about? My doctor, the central referral, or the hospital that received the referral? Which is responsible for deciding the category?
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December 2021
1 Kudo
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.
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December 2021
2 Kudos
Thanks WEGotThis!! My gp took bloods back when she made the referral and everything was normal she said except my iron was a tad low. I was super tired and having some mild but persistant pain over the weekend so I decided I would go back to the GP tomorrow and try and push for a second scan. That will either put my mind at ease that it isn't rapidly growing or it will show growth and hopefully bump me up to category one. I'll keep y'all updated... I can't express how grateful I am for all the support.
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December 2021
2 Kudos
Hello AlfHam. Thank you for your detailed and encouraging reply! My case was an incidental finding while they were investigating general abdominal pain (which also led to a diagnosis of IBS). I got seen very quickly in terms of the scans I had. I've had a CT already and confirmed there is a solid tumour there, however because it is so small (only 7mm) they can't tell if it's cancerous or benign so I'm waiting for a urologist who I guess will either decide to resect or watch it... From my research it seems like at such a small size it's impossible to tell even for specialists. But it might be worth the peace of mind going to a private urologist just to see what they say even if it doesn't change anything. I found on my states health website that my case is classed as category two which is meant to be within three months, but they've said it will be delayed, just not for how long. I definitely take your point about speaking up on my own behalf. Something I find difficult sometimes! Maybe this will be a good learning for me. I could ring the hospital maybe and see how long the wait is likely to be. Even knowing that would be better than nothing. Thanks again for the encouragement and sharing your story. I really appreciate it.
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December 2021
1 Kudo
Thank you wegotthis, it helps to hear your experience! For me, it's already been about a month and a half since they found the tumour and I'm getting the feeling I might not get into the specialist for a proper diagnosis until another four or five months at least, from the letter they sent. I mean, I guess in a way that's good because they must not think it's too urgent. It's just so weird knowing I have this thing inside me which could be cancer, and it's started hurting more consistently so I think that means it is growing, but I just have no way to really know, plus I have IBS so the pain could be from that and I don't know how to tell the difference. That's why I'm wondering if it would be better to just foot a private bill for a consult, but then would I have to do everything private? I can't afford that. Dunno. I am trying to keep it together, and I'm continuing activites I enjoy and whatnot. It's just super difficult during the waiting. Glad you know the feels 😌
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December 2021
3 Kudos
Hi everyone, I'm on the waitlist at my public hospital to get seen about a kidney tumour. It's small and not clear if benign or malignant. I got a letter saying to expect delays as they are busy and I'm freaking out a bit. What it it grows in the meantime or metastasizes or something? I'm trying to keep a lid on it because I know it doesn't help to catastrophise but I'd love to hear some feedback from experienced people on wait times and is it worth it to get seen privately?
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