Hi everyone, I'm new here.
I was diagnosed with kidney cancer 3 weeks ago as an incidental finding. I thought I might have chronic appendicitis as I had a mild pain in my lower right abdomen for a couple of days. It turns out I have a small stone there that isn't causing any inflammation and a bit of diverticular disease that might have caused the pain. In addition they found a 3cm tumour on my left kidney, nothing to do with my pain.
I had another CT scan and there is no sign of spread to lungs, etc. I had partial nephrectomy surgery 4 days ago and my surgeon gave me biopsy results today. He basically said I was cured. Just need to watch in case it comes back. Max size was 2.8cm, no spread to lymph nodes or fat. Everything tested came back negative, no necrosis, etc. He only spoke to me for a few mins and basically said, you don't have cancer any more. I've seen stats on prognosis for 5yr survival and they can be90+%. I'm a 47 year old otherwise healthy male.
The one thing concerning me most is the WHO/ISUP grading which came back as grade 3. I didn't know what this meant, but a bit of googling now has me more worried. I've seen stats saying 5yr survival rates for grade 3 are sub 50%. I'm only under the care of a Urology Surgeon. I suppose in his terms I am cured... The operation was a success, we got clear margins, there is no more tumour and I still have one and a half kidneys. i was referred to him by a private emergency department, as I never go to a GP (I'm never sick) so nobody is looking at me from any view other than surgical, which has gone well.
So given my early stage and successful surgery, is the grading still such a huge factor? Secondly, should I be asking for a referral to an Oncologist... And if so, when? Now or if/when it comes back.
I have a follow up appointment in six weeks, but communication isn't my surgeons strong point. Are there any resources that would give me clearer info about grading in early stage CCRCC? I've read what the grades are and that it relates to speed of growth, but nothing clear on my stage and grade together, just some pretty depressing general stats on grade 3, but not specific to stages. Or does anyone have any personal experience of this sort of situation?
I know there are no guarantees, but I'm still struggling to come to terms with even having cancer. Up until the day of my surgery, kidney cancer had had zero impact on my life and how I felt, now I have some sore wounds and feel like I've been given great news with a hidden subtext.
And sorry for the long post!
Firstly, a few words of advise from a former cancer patient. Don't spend too much time reading about the survival statistics. Yes, it's good to be prepared but it can also be overwhelming to read the statistics, especially if you're not reading them correctly or misinterpreting them.
Secondly, I don't have any medical training. Please take my words as my personal experience only, not as a substitute for medical advice.
In your message you've mentioned the cancer grade, not the cancer stage.
A kidney cancer grading refers to the speed that the cancer is growing.
A kidney cancer staging refers to how advanced the cancer is.
So a grade 3 kidney cancer would indicate that the cancer is growing relatively quickly, but doesn't tell you how advanced the cancer is.
So when they removed the tumour, your text indicates there were unable to find any signs of the cancer in lymph nodes (one of the ways that cancer spreads) or in any surrounding tissue. Sounds like stage 1. It sounds like you are cancer free dude. Go forth and be happy.
A stage 1 vs stage 3 diagnosis is a very different.
Generally you will only have an oncologist if you have cancer.
Get a list of all your question before your appointment and take them with you and ask them then of the experts. If you're not satisfied, get a second opinion.
Thanks for the reply. Sorry, I thought I had put more info in the post, I edited it on my tablet and must've deleted too much!
My stage is rT1a currently. In scans the size was 3.5cm but after surgery that was revised down to 2.8cm as the largest dimension. I had a CT scan of my lower abdomen which discovered the tumour as part of investigating my suspected appendicitis. The same day I had a second CT of my chest to check for spread, with no signs. In the initial scan here was a 2mm subpleural nodule noted which said was like to be an incidental inttapulmonary lymph node but should be followed due to the main diagnosis. All other pathology was good. No necrosis, vascular spread, etc. So Stage 1a and everything great except Grade 3.
I didn't have a bone scan. My urologist never mentioned one, although reading his leaflet about the operation post surgery, it mentions that staging is normally carried out using CT and bone scan. I'm worried that I had the CT investigations, but not the bone scan.
Naturally I'm in panic mode that it has already spread to my bones. I know I've been lucky to find it, and there are many more people who haven't had such fortunate findings, but if I had cancer and didn't know it... it could've spread and me not know it. I've had a sore toe over the last few weeks that looks slightly bulging compared to the other foot. I dont remember kicking anything. I really hope I am paranoid, but I'm looking at an aggressive form of cancer that was found early and I haven't had the scans to establish a baseline.
I now have an appointment with the surgeon tomorrow as I've had some complications from the surgery, blood in urine and a urinoma has formed (I had another CT IVP yesterday to investigate the blood) he's hoping it self resolves but I may need more surgery (tentatively booked for 2 days from now.) I know these are potential complications of the surgery rather than the cancer, but at least it gives me face to face time with the surgeon.
I'm going to ask about the bone scan and get a list of other questions written down. I literally had 15 mins face time with the surgeon before surgery was arranged (about an hour after I found out I had cancer.) On the one hand, the speed of diagnosis to treatment has been fantastic, but on the other hand I'm still coming to terms with the whole fact I have cancer and am now trying to retrace my steps to fill in the blanks I missed. I have a GP appointment on Thursday, it was the earliest I could get at my local practice, but I might have to cancel as that's the tentative date for my second surgery if required...theres a chance I'll have had two Operations and 3 CT scans before a GP even knows who I am!
So that's my other challenge right now... I'm not really sure what I dont know! I haven't gone down the traditional route. I think things have been expedited, but I don't want to miss anything important that should be done or info I should be gathering right now.
Here is a website with information from Kidney Health Australia.
Have a read of these. The last one should be helpful for tomorrow. Will help prepare you with questions you might want to ask.
And don't forget to let us know how it goes.
It went well. I prepared my questions and took them with me. That helped.
I asked about the bone scan and he has given me a referral for one. He reassured me that given a clear chest and abdomen CT along with the small size (2.8cm) that the likelihood of it having spread was small, around 2%. In his 20 years as a Urologist he had not seen any that size that had spread, and he has only had 2 patients at T1a stage surgery where it recurred in the future, one after 3 years and one after 8 years. I'm considering the scan, I have a GP appointment next week so will discuss the risks with the GP as well (radiation from the FDG CT versus risk of spread) I mentioned my sore toe and he said it was incredibly unlikely to have spread to there, and the full body scan didn't actually cover feet!
I also confirmed the surveillance plan, ultrasound then CT alternating every 6 months, so only radiation once a year. My wife and I had two different understandings of the plan prior to that meeting so it was useful to confirm and write it down. It seems so obvious, but it really helped.
The not so good part was that he confirmed I needed a kidney stent installed as there was a urinoma in the kidney and he would prefer to be cautious and deal with it rather than hope it self resolved. That was scheduled for the next day, so I went back to hospital, had that inserted and had an overnight stay. I got out two days ago and have been very limited by the stent, just about any movement caused pain or discomfort in my kidney or bladder. The catheter for 24 hours was nothing short of agony. It's my second in two weeks and was incredibly uncomfortable.
I was told the first time I passed urine would be agony, but to be honest there was a bit of a burning sensation, but nowhere near as bad as even just trying to sit up with the catheter in! Any discomfort urinating soon passed. He said while doing the procedure that something they thought was blood in the scan was actually a larger pool of urine, so a stent was definitely required and it had been a good decision to do it straight away. None of these issues are cancer related, just fairly common complications of recovering from the surgery. I still have a fair amount of urine in my blood, which the surgeon said is normal. He expects I will be passing blood for up to two weeks. It's still a bit disconcerting, as it clearly isn't right, but at least I know what to expect. He said as long as there isn't tummy pain, a fever or feeling sick then it's normal. I don't have any of them, just producing cranberry juice or rose wine as opposed to a pale straw consistency.
My external wounds have healed well, my dressings are off and no complications there. The internal wounds are getting better, I'm definitely less sore. The stent is better today than it was yesterday, so onwards and upwards, but he did warn me it will limit activity, so I am being ultra cautious, just short walks regularly, no lifting anything, etc.
I have the FDG CT booked but will chat to the GP first then decide whether to cancel or go ahead. I feel a bit better now as I've had some time talking about it with the surgeon. This was also the first time my wife had seen him or spoken to him since the initial consultation so she is a lot happier as well.
All other body functions are working like clockwork and I don't feel sick, just some twinges from the catheter and the odd bit of pain from the stent. I have decent pain relief, so it isn't too bad.
If I had one wish for the human race, it would be that someone invents something that makes catheters comfortable and painless!
I keep telling myself I’ve been lucky, I’m just feeling sorry for myself recovering from the op and thinking of questions I should’ve asked before now. Today I’m feeling a bit better than yesterday. I’ve reduced my pain meds, a bit of discomfort from the stent but not too bad. There’s no visible blood in my urine unlike previous days. I dare say there’s some small quantity, but not that it colours it pink or red, so that’s good.
Currently I’m thinking I will go ahead with the FDG CT scan. Peace of mind would be worth it, so would finding any spread early. At least I’ll have a baseline for any future scans.
Hey, I hate to sound like a jerk. You need to go to an oncologist and a urologist.
Especially if you feel like your doctor doesn't communicate well. Talk to the specialist about the part of the body effected and the specialist about cancer.
To circle back to when my father was around and was stricken. I essentially became his nurse maid and cancer researcher for the 1 year he was around. I met and spoke to several patients, and doctors. Been to a lot of funerals, and a few people who turned it around. Saw the same exact story over and over again. I was in remission doc told me I was ok, or I am going to beat this, and we are going tot the best doctors, or I am going to get into experimental program.
Fact is this.... You got lucky finding it when you did. You have reservations about what you are told. Rightfully so. But you dont have the medical background to know for sure and you need to talk to the person who knows a hell of a lot about he kidneys and Cancer. A urologist and oncologist.
What I did run into was a lady who had kidney cancer. Stage 2. When I asked her how she found out she said she felt pain playing basket ball. This gal was in her 50's. She said she found it 22 years ago. They wanted to resect it and she told them to just take the whole thing out.
Then she told me that every 3 years she goes in for a pet scan and makes them do a round of chemo even though she is has been clear. She was not screwing around.
You probably dont need to be that extreme but talk to an oncologist and a urologist. Once it spreads it is extremely difficult o overcome if not impossible. And you have been given an opportunity almost everyone on this board wishes they had.
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