Kidney Cancer Stages Vs Grades

[BlueWren]

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

[Budgie]

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

[BlueWren]

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

[AlfHam]

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. 

[Budgie]

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. 👍

[BlueWren]

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  🙂

[Budgie]

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. 🤞

[AlfHam]

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. 

[Budgie]

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

[AlfHam]

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.