topic Re: Kidney Cancer Stages Vs Grades in I've just been diagnosed

Kidney Cancer Stages Vs Grades

AlfHam — Tue, 16 Jun 2020 12:27:56 GMT

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!

Re: Kidney Cancer Stages Vs Grades

sch — Tue, 23 Jun 2020 01:19:32 GMT

Hi AlfHam,

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.

Referring to https://www.cancersa.org.au/information/a-z-index/staging-grading-and-prognosis-of-kidney-cancer#grading.

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.

-s

Re: Kidney Cancer Stages Vs Grades

AlfHam — Tue, 23 Jun 2020 06:50:49 GMT

Hi sch,

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.

Re: Kidney Cancer Stages Vs Grades

sch — Tue, 23 Jun 2020 09:35:28 GMT

Hi,

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.

https://kidney.org.au/your-kidneys/support/kidney-cancer/newly-diagnosed

https://kidney.org.au/your-kidneys/support/kidney-cancer/kidney-cancer-resources

https://kidney.org.au/cms_uploads/docs/make-the-most-of-your-visit-to-the-doctor.pdf

Good luck!

And don't forget to let us know how it goes.

-s

Re: Kidney Cancer Stages Vs Grades

sch — Sun, 28 Jun 2020 06:28:10 GMT

Hi,

How did the appointment go with the surgeon?

-s

Re: Kidney Cancer Stages Vs Grades

AlfHam — Sun, 28 Jun 2020 08:00:23 GMT

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!

Re: Kidney Cancer Stages Vs Grades

Budgie — Mon, 29 Jun 2020 03:02:57 GMT

Hi AlfHam,
I was diagnosed with stage 4 kidney cancer (MRCC) back in August of 2012. Mine had already spread, which is how it was found.
Kidney cancer, if it's left untreated, will usually spread upwards in the body, affecting the lungs, liver, spleen, brain & bones....usually. So, it probably has nothing to do with your toe being swollen. If it gets in your bones, it will be very painful. I have bone mets in a couple of my ribs, my right jaw & in my skull. Radiation is really the only way to ease the pain from bone Mets, but don't worry about that until you need to. You're lucky you have caught it early, as kidney cancer sneaks up on you. Most people don't know they have it until it's already spread.

I wish you all the very best for your future, & hope you get no more recurrencesof it.

Budgie

Re: Kidney Cancer Stages Vs Grades

AlfHam — Tue, 30 Jun 2020 13:15:51 GMT

Thanks Budgie,

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.

Re: Kidney Cancer Stages Vs Grades

TonySkala — Tue, 30 Jun 2020 20:14:33 GMT

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.

Re: Kidney Cancer Stages Vs Grades

Budgie — Wed, 01 Jul 2020 04:05:42 GMT

Absolutely! Peace of mind is a wonderful thing. You will get better day by day. My only real advice here is to drink plenty of water to help your kidneys - at least 2 - 3 litres a day. That way you'll ease any pressure on them to flush toxins from your body.
Cheers
Budgie

Re: Kidney Cancer Stages Vs Grades

BlueWren — Thu, 02 Jul 2020 08:26:03 GMT

Hello AlfHam

thank you for your post - sorry to hear of your diagnosis and what you have been through but good to hear you had prompt treatment and given the all clear.

All the best with the Bone Scan and resolution of the post-op complications.

I have been recently diagnosed with a small renal mass and seeing the urologist tomorrow. So a bit behind you. Helpful to hear your story and read other people's advice.

best wishes

Re: Kidney Cancer Stages Vs Grades

Budgie — Thu, 02 Jul 2020 09:28:33 GMT

Hey BlueWren,

Sorry to hear of your diagnosis, but it sounds like you've caught it early too. My brother also has kidney cancer, diagnosed recently. This was on top of him already having prostate cancer, but because it was caught quickly, he had it ablated & now he's got the all clear.
I hope all goes smoothly & easily for you with your coming treatment.
Please feel free to ask me anything if you want to.

Budgie

Re: Kidney Cancer Stages Vs Grades

BlueWren — Thu, 02 Jul 2020 11:59:09 GMT

Hi Budgie

Thanks so much for your reply and your offer of support- I'll certainly ask if there is anything I am wanting to know.

Wow your brother has had a run. Glad to hear they got on top of his kidney cancer.

Yes it's definitely a positive to catch this early! Imagine there will be more testing but feeling reasonably optimistic.

Many thanks

BlueWren

Re: Kidney Cancer Stages Vs Grades

AlfHam — Fri, 03 Jul 2020 04:53:58 GMT

Good luck with your treatment BlueWren. I found the surgery itself wasn't too bad, not as bad as I had feared. I don't like needles, but you get used to them. Even my op complications have settled down.

I had my FDG PET-CT today. More needles and stuck in a tube! That doesn't bother me other than the needle... I just look away now. Hopefully get the results next week or the week after.

I did have a bit of a hiccup...

The radiology clinic was the same provider as my previous scans. I thought, I want to be thorough, so I'll request copies of the previous reports. I know the results as the surgeon has told me what they said, but just so I have the full report, and I'm at the reception where they can do it. I have the one for my abdomen, but not the chest scan or the subsequent one for kidney function post op. On my chest CT, the comments say:

No definite findings of metastatic disease

Minor expansive deformity of second rib, probably a healed fracture but may require further investigation (bone scan) if there is no relevant history.

There was also a note about a very small nodule that was likely post infection inflammation in one of my lungs, no suggestion of follow up.

PARDON?? i've not broken a rib that I'm aware of. I know it's possible to have minor rib fractures and not know, but this is the scan the doc told me gave me the all clear! It actually says recommend a bone scan if there's no history of a break!! So now I'm panicking again. Stage 1a versus Stage 3 or 4 is a huge difference.

I met my GP yesterday for the first time. I give the name of my wife's GP if I'm getting anything done, but I'm never at the doctor...she said she had looked over my test results and it looks as though it's been caught early and I'm cured. She said if I want peace of mind, go ahead with the FDG PET-CT. No mention of ribs, etc.

My surgeon is also on leave next week, so even if the results come back I might need to wait. Last week I was told I was cancer free... Now I'm not so sure and will have to wait for my test results.

Dumb question... Is the FDG PET-CT a bone scan?? Or do I need to go back for more radiation and needles?

Advice for anyone, get a full copy of every report, don't just let your surgeon give you a big thumbs up and take their word for it.

Re: Kidney Cancer Stages Vs Grades

Budgie — Fri, 03 Jul 2020 05:15:54 GMT

Hi AlfHam,

I always get a copy of the report for all my scans & most blood tests. I always go over everything they say, & Google everything if I don't understand it. I ask questions of my onc regarding the reports if there's something I want clarified. But, you have to remember that everyone is different, made differently. I've had reports saying I've had knee replacements before, when I haven't. You have to remember that they are comparing to a text book. One person's bones can look very different to another person's bones etc. Don't stress too much. Listen to your body. You will know if there's something wrong. You will have pain in your bone if you have a tumour in it. They are very painful.

A bone scan requires you to have a radiation injection, wait a couple of hours for the radiation to spread through your body, then have the scan. The scanner will be very close to your body & travel very slowly down the length of your body. The actual machine is of a very low radiation level. Not like a normal x-ray machine.

Don't stress! Stress causes more problems. 👍

Re: Kidney Cancer Stages Vs Grades

BlueWren — Fri, 03 Jul 2020 05:25:59 GMT

Hello Alham

Glad to hear you are much improved.

I agree that's its a good idea to get copies of reports for your own records. However for myself I know from bitter experience it's best to wait to discuss them with specialist or GP to prevent jumping to conclusions as I have done previously. Nowadays I get the dr to print out the report while I'm with them and then discuss it so I can ask questions then and there.

I saw the Urologist today. Because of where the tumour is they can't do a partial nephrectomy - it's close to the middle of the kidney near where the blood vessels are. This means they also can't do a biopsy. As the tumour is small they are going to wait and I'll have an ultrasound in 3 months time so they can see if there is any growth. If it's grown quickly then they'll remove the whole kidney. If little or no growth then I'll be on ongoing active surveillance. I'm not happy with having to wait but I don't want to lose the whole kidney either! So now the challenge is to learn to live with the uncertainty.

Good luck with your latest test results. Sorry I can't answer your questions re bone scans.

Best wishes 🙂

Re: Kidney Cancer Stages Vs Grades

Budgie — Fri, 03 Jul 2020 06:24:23 GMT

Hi @BlueWren,

Waiting is a terrible thing to have to do.

My surgeon told me the wonderful thing about the kidneys is you only need 10% of one kidney for your body to function properly. So, while it's not nice having an organ removed, sometimes, when it's necessary to remove it, it's not that bad at the end of the day. Here's hoping you don't need yours removed. 🤞

Re: Kidney Cancer Stages Vs Grades

AlfHam — Mon, 06 Jul 2020 12:53:12 GMT

Hi Budgie,

I'm no medical expert, but I think I might be able to spot a knee replacement or lack thereof on a scan! A pet hate I have at work is when people write reports for our customers and use a previous similar one as a template... Then either delete the wrong stuff, or forget to remove info not meant to be in the document...i always worry the doctor does that with a report!

My surgeon is on holiday for a week but I've seen the report. I had been referred to the surgeon from a private Emergency Dept who also got sent a copy, so I got it from them.

No metastasis.

Phew.

I also got a doctor to read the report (who wasn't a specialist) and she said it was all clear except for review of a couple of slightly reactive lymph nodes which are most likely due to the recent procedures I've had.

The report also specifically said no skeletal lesions. Nothing specific about the lump on my rib from the previous scan, but nothing found bone related. I wondered if the scan I had would show any bone mets. It was an FDG PET-CT, not specifically a bone scan (scintigraph?) they inject you with a radioactive fluoro-glucose fluid (that's the FDG bit) and wait about 45 mins for the body to absorb it. The PET scan then takes about 20-30 mins then they do a standard CT with iodine contrast as well so the two can be overlayed/compared. I'm no expert, but I've now read medical studies that say FDG PET can be more useful than a bone scan for kidney cancer mets. At this point, I'm taking it as great news. Ive never had any pain from my ribs that I can remember, so I'm taking it as clear.

No doubt I'll have a chat with my surgeon when he is back next week. The leaking from my kidney has reduced from the scan two weeks ago, so that is good too, the stent is doing its job.

@BlueWren , it's unfortunate a partial nephrectomy isn't possible. If it looks like RCC on a scan there's a pretty high likelihood that's exactly what it is. Biopsy would only really tell you what grade, so if that isn't possible then regular surveillance is the next best thing. In terms of treating the cancer, radical and partial nephrectomy have very similar success, so if you do need to get the whole kidney removed because it is growing, then I really wouldn't worry about it. A small part of one kidney is all you really need. Two would be great, but I was OK with the whole kidney being removed if it had to come out...that was a possible outcome of my surgery. My post on complications are due to me having a partial... If it was a radical, then I wouldn't have had my complications! By all means use active surveillance right now, but if your specialist recommends removal, it will be OK.

Re: Kidney Cancer Stages Vs Grades

Budgie — Wed, 08 Jul 2020 00:52:45 GMT

Great news @AlfHam, I'm very pleased your scan was clear. 😊 I've never actually had a PET scan. I was told they weren't very good for kidney cancer.

Anyway, your news is wonderful. Keep on getting well.
Ciao

Budgie

Re: Kidney Cancer Stages Vs Grades

AlfHam — Mon, 07 Sep 2020 07:29:31 GMT

Bit of an update, all news is good.

I've had my stent removed. I didn't think it was holding me back much...but once it was removed I realised that it really was. Walking became so much easier...I could just walk faster and I wasn't slouching so much.

I had nightmares about the stent removal process. My surgeon had told me they use a little local anesthetic, put a flexible camera up and pull the stent out using that. As I was going in, the anesthetist suggested some light sedation so I said yes. I went out like a light and woke up 15 mins later and finished the sentence I had just been saying...The stent was out, no pain and I didn't need to hear them doing it. I was over the moon. There was a tiny bit of discomfort doing a pee the first time, but after that, absolutely no issues.

A couple of weeks later I then had a final ultrasound on the repaired kidney. There are no signs of leaking or bleeding around the kidney, so the stent has done its job. No signs of other tumours, but maybe a bit early for that to appear anyway. I've now got an abdominal ultrasound to organise in December, then a CT next June. The plan is to do scans like that for the foreseeable future every six months depending on the results. Apparently only a small amount of kidney was removed, I was lucky in that it was well defined on the edge of my kidney. The surgeon has told me to go back to any activity I want, but I'll need to build up strength. He wasn't wrong. At first, even going up a flight of stairs left me exhausted. I had lost about 8Kg since the op, the vast majority of which I think was muscle mass. I'm back walking 5km+ per day. I haven't started running yet, but I aim to be back playing football (soccer) in around 3 months. I play Seniors, over 45s, so it's a good level for my fitness...that said, it isn't great for morale when you are 47 and a 70 year old who has had a hip or knee replacement could run past you before your surgery!

My external wounds have healed well. I have a tiny bit of numbness around my belly button, but that's hardly a disaster...I used to be very tickly, so if anything it's an improvement. The recovery process has on the whole gone pretty well. I had the leakage issue that was fixed by the stent, and its removal was pain free. I had to do little or no exercise while the stent was in, but that was OK. I don't have any major aches or pains now...and I suspect anything I do have is because my muscles are weak and out of use, so exercise will help. I had no issues with eating or drinking. No change in appetite or ability to hold things down. The surgery sounds scary, but so far, touch wood, for me the recovery has gone well.

I also got an X Ray on my toe that had been sore. No signs of bone deformity, so unlikely to be a tumour. Also no signs of arthritis...the hospital think it may be a soft tissue injury. I thought I'd get it checked out in case I had some other problem! I don't want to put off going to the Doctor ever again...as getting checked out for something else may have saved my life.

I'm currently cancer free but will need to be vigilant. My surgeon and GP seem to think there is a real chance I have been 'cured' but I'll always be looking over my shoulder. I'm looking at that as a good thing. These investigations are really just 'big check up' and who knows what else they might find early that's unrelated to my original issue.Early is good. I found my kidney cancer when I was looking for something else, so I welcome the scans. If anyone else is concerned about this surgery, I can say it went well for me. The recovery was good, I had very few problems and there really wasn't much pain involved (other than catheters!) If you are in a similar situation and are a candidate for this surgery, go for it.