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?
We all have gone through this waiting to find out what we had..
It took over a month to finally find out exactly what I have. Then I had to wait 3 weeks to get my first treatment.
I understand all your questions and concerns. I thought the same way. I use the time to research all the possibilities. The doctors thought I had lymphoma after the first image . I had two lumps in my armpit. They removed them and did a biopsy on them . They had to send them to a different lab because my lymphoma is concerned rare.
After they figure out what it was. More waiting to get more images and a bone narrow biopsy. More waiting for results.
I even drove 3 hours to get a image done so I wouldn't have to wait a week to have it done closer to me.
I hated weekends because I felt no one was working on finding out what I have and how bad it was.
Some test results came back faster than others. A day felt like a week.
My wife and I did everything we could to stay positive. Unfortunately as the test results started coming back it got harder. They found that I had a heart and lung problem on top of having cancer. More tests and images were done. More waiting!!!
Once things get started you probably will see things goes pretty quickly.
I'm very fortunate that my primary doctor has made things move quickly. Even though I was feeling like it was taking forever.
I hope you get some answers soon. Stay busy and enjoy every day like it's your last.
If you have to have treatment some people have bad side effects.
I just had my first one two weekends ago. I'm very fortunate that the only side effects so far is I get tried quickly.
My best advice is don't let this bring you down and rob you from enjoying your life.
I had a blood cancer but it hasn't stopped me from being me.
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 😌
One of the greatest things I have learnt on this kidney cancer journey is waiting. Waiting in waiting rooms, waiting to have scans, waiting to get results, waiting to get treatment. And I’m a private patient.
Waiting can be a nightmare. Try not to worry about it. Easier said than done.
That said...is there anything you can do to reduce the waiting time? Also, what is your situation?
How did you discover you might have Kidney Cancer? Did you have symptoms or was i an incidental finding?
For example, I had a CT scan for possible appendicitis. It turns out I had a stone in my appendix which was causing a bit of a grumble and on the other side of my body, sitting nice and quietly minding its own business, was a 3cm tumour on my left kidney. I had no symptoms. I was really lucky as this meant I had caught it pretty early.
My surgeon told me anything under 3cm is often observed to see if or how fast it grows, so if it is small, the waiting is probably not going to make things worse even if it is cancer.
Peace of mind is a great thing, so if you feel you are going nowhere, people often don't like to do this, but be a squeeky wheel. I was getting a non-urgent heart stress test done but my appoint was 2 months away. I called them weekly to see if they could do it sooner. A cancellation came up and they called me, I only waited 3 weeks.
For my cancer treatment I felt mine was very quick. I went private. I went to a Private Emergency Department as my wife works there. They organised my scans in the hospital, so I had a CT scan within 2 hours of entering the building. I had my results an hour later. Because I was still in the ED (I felt fine but was simply there to get seen to quickly) I got told my results by a doctor...the scan was basically a diagnosis of Renal Cell Carcinoma. At this point I have a diagnosis and I only went in because I had a 1/10 pain in my right groin that had lasted for 3 days (it disappeared never to come back that night, haven't felt it since.) I went in with a groin grumble and 3 hours later effectively have a diagnosis of cancer.
The next bit was pure luck for me. The ED Doctor gave me a referral to a Urologist. There was a Urologist consulting in the hospital that morning. He saw me within an hour. The scan was 100% proof I had cancer in his option. He organised another CT of my chest to check for spread and my operation was booked for his first free time...about three weeks from that time. I got my chest CR results (all clear) and went home about another hour later. I got there at 6am witha groin strain or grumbling appendix and left less than 5 hours later with two CT scan results, a cancer diagnosis and life saving surgery booked three weeks later. It happened so quick I didn't have time to worry about it
Those three weeks were slow. They dragged in. I think it would've been worse if I had to wait 3 weeks for a diagnosis, but I had that already. I knew what I was dealing with and it was 3 weeks to prepare for surgery and rehab. I asked my surgeon if he could do the operation at a different hospital sooner. The answer was no, he only had so many slots available, etc. He also assured me that 3 weeks would make no difference clinically for kidney cancer at my size and stage.
My advice for you? If you don't have a diagnosis yet...push to get one. call doctors, annoy people for results. My urologist didn't tell me my pathology results for days. I had to chase up his rooms from my hospital bed...I bumped into him while I was slowly walking around the hospital ward and had to remind him...he had received them days earlier but forgot to tell me I had clear margins!
If you are able to go private...can you do that for a diagnosis? Can you get a private referral to a Urologist and be seen sooner than in the public system? That doesn't mean you have to have a private Operation. At least you will know what you are dealing with and what your priority is, which you can then take back to the public system...show your GP and see if it moves you up (or down!) the priority!
I was really lucky. Stars aligned for me. If you feel like things aren't moving as quickly as you'd like...speak up. Nobody else will!
Good luck with your journey...and even if it is Kidney Cancer, you can deal with it. I'm 1.5 years post op and fortunately haven't seen any recurrence. is till get regular scans and worry about every ache or pain, but so far so good!
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.
Thanks for more information on your progress.
When was the last time you had a complete blood test done ?
I would like to see what your white blood cell count is.
A year ago during a physical and blood work my white blood cells count was just .05 away from being high. I did a blood test 6 months later and it was still high but the doctor didn't seem to be worried.
Thinking that you may have cancer is harder than knowing you have it. At least knowing you do you can start making plans.
I really hope you get answers soon.
I know what you are going through.
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.
I love to research so I did a little digging around. I always like to start with something positive.
When you have time read this.
I really hope that you will find out that you don't really have any thing serious to worry about. Sounds promising ❤
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