looking for advice about the op to remove a growth and kidney - or to go with it being watched

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looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi to all,

I have just started to read this, instead of making a phone call.

I have recently been told that I have a stage 1 renal cancer, and will have to have the kidney removed for this.  

It has taken me two years to get over pneumonia and I am finally feeling well. The last thing I want is another health problem as I am finally up to catching up in the garden and house!  And it will take another couple of months to do this. 

 

So I am looking for advice from those who have been here too, and had the op - and especially if after the op, they found out that the growth was benign.  How do you cope with a loss of a good kidney when it was not needed. 

Also, looking to hear from others who have been through this about what the op did to them and what they could not do for how long - especially in a gardening and sewing and cooking and housework sense. (Sorry to be so mundane). 

 

I have not yet agreed  to have the op, but had opted for it being watched - so I would also like to know how that goes in the long term. 

 

Thanks for anyone who can share their stories. 

Big terrifying decisions at a time when I finally feel well in my mid- 60s

 

17 REPLIES 17
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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi JC56,

I was diagnosed with stage 4 kidney cancer in Aug 2012. I had a radical right nephrectomy & they also took the right adrenal gland.

You are very lucky to have found it in stage 1. Are you on any chemo, or are you taking nothing at all? The question about removing the kidney would depend on how big the tumour is. My brother also developed kidney cancer but his was small enough just to be ablated. He appears to be fine now. The thing with kidney cancer is that once it has metastasised, it is too late. If you intend to watch, keep a very close eye on it.
Kidneys are remarkable in that you only need 10% of a kidney for your body to function.

If you decide to have it removed, they can do keyhole surgery if the kidney isn't too big. My kidney was large, & they nicked my adrenal vein on their way in, so I ended up with a 40cm cut across my stomach. I had 6 weeks off work, & as with all abdominal ops, I wasn't allowed to do any heavy lifting for the same amount of time. Actually, you can't lift anything heavier than 2ltrs for the first couple of weeks. It never interfered with my sewing though. So really, if you take it easy it's not too bad, you should be able to do some gentle gardening after a few weeks.

Whichever way you do decide to go, I wish you the very best.

Budgie
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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi Budgie

Thank you for the quick reply.

I am so glad to hear that you have ended up ok. Did you have symptoms before hand? Do you have any regular checks to make sure that your remaining kidney stays ok? 

If not too inquisitive: Did you have anyone come in to look after you? How did you sleep with it too during the recovery?  Could you eat what you had before ?  How did you prepare yourself for the op? 

 

I am at the stage where a 4.8cm growth on the kidney has been found with a CT scan - when they were checking my lungs for what had been wrong there ( Doc's sentence before was that my lungs were finally clear! YAY!).  I have been told that it may/not be cancer.  (How do you know? have it out! ) But the only treatment I can be offered/ must have  is to have the whole kidney removed with it.  That seems very drastic to me - especially as I wont' know until both are removed if it is cancer or not.  

 

I also have a history of my body  not recovering well and having unexpected reactions to operations and illnesses, eg 2 years to get over pneumonia;  predicted recovery of a few days for an earlier operation  took weeks as my body 'blew' up in response; and I have just had 3 days in severe pain unable to get up after the iodine injection for the CT scan. So it is not just a general fear that it might not be necessary,  but also fear that the docs won't be able to predict what my body may do, so any predictions of 6 weeks could be a lot longer, and I need to factor that in. 

 

I live on a farm.  I do some heavy work, with the sheep and crops.  I  am still feeding lambs now, but won't be by full summer.  so what I can do and how quickly really does matter here in terms of managing this - and getting help in for me if needed!  (Did you have anyone come in to look after you?)  And, How did you sleep with it too during the recovery?  Could you eat what you had before ? 

 

So your comments on what you could do and when are really appreciated, as I do love sewing! But were you ok moving around to do the cutting of materials as well? Or did you have that all prepared before hand?  

 

thanks 

again 

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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi @JC56,

Wow, your body certainly doesn't like anything invasive.
My journey started when I found a lump near my jaw on the left side. I thought it was because of my broken molar, so I went to the dentist. It turned out to be a 9cm×7cm×2cm tangled mass of veins growing inside my neck which I had removed in June. My husband & I went on holidays not long after the surgery, & didn't get the results of the pathology till August. The only real symptoms of the cancer were extreme tiredness & a bit of oedema in the legs, which I didn't associate with kidney cancer.
I had surgery in the September, healed well within the 6 weeks & started oral chemo in October. I have been on different chemos ever since, as your body eventually becomes immune to the effects of each drug, & you have to try a different one.
Regards to sleeping, I had to sleep on my back, which took a bit of getting used to for me as I'm a left-hand-side sleeper. I used pillows to prop my self up to start with, but then I got a wedge pillow which helped enormously. I also always sleep with a pillow under my feet, as this help drain away the excess fluid in my legs.
I see my oncologist every 6-8 weeks & have CT scans every 3 months. I see my GP every month for ongoing pain meds. I am terminal.
I am lucky enough to have an absolutely fabulous husband who looks after me. I ate a normal diet before & after the nephrectomy until I started the chemo. It makes your mouth super sensitive to spicey & sweet foods. I can no longer have chilli at all. I can tolerate a small amount of ginger & curry. Chocolate doesn't taste any good anymore. Alot of fruits are too sweet now. Coffee is apparently not good for your kidneys either, but that's one thing I'm NOT giving up.
Where abouts do you live, & how far from hospital are you? Can your doctor not do a biopsy to see whether or not it's cancer? And, can you get a second opinion? If you can proceed without a nephrectomy, that would obviously be preferable, especially how your body reacts to things.
With the sewing, sorry, I only do cross stitch, not clothes making, so a bit different there. I would think you could still do cutting as long as you don't overstretch yourself. You would definitely need help around the farm for the heavy lifting. If you go ahead with surgery, if the cancer hasn't already spread, you may not need chemo, so then it would be just a matter of recovering from the surgery. Given your history I would definitely say you would need alot longer than 6 weeks. But eat healthy & the most important thing would be to drink at least 2ltrs of water a day. That's the bare minimum. I usually drink 4 litres every day, 5 come summer.

I would definitely ask if you could have a biopsy first, then go for a second opinion.
But whichever way you choose, I hope I've given you some answers. Please ask me anything you need to.

Budgie
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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi Budgie

 

Thanks for your quick reply again - and the advice - that is helpful. 

 

Your journey does sound very scary and I am sad to hear that it doesn't end in full healing.   I can associate with tiredness - always so, but then I fit a lot in the day(light) and then collapse in about a 1/4 hour early evening, usually within an hour of eating. Don't always get the dishes done!  Maybe that is the kidney?  Did getting the cancer under control give you more energy? Less tiredness? 

 

This morning, I have had another consultation with the urologist and had better questions to ask for that.  Out of that , the kidney/growth removal op has been pencilled in for Dec - and a biopsy time is to be organised in the next couple of weeks.  I have been assured that they can do these without whatever was in the iodine CT scan.  

 

Apparently the chance that it is not cancer is about 15%.  If the biopsy comes back confidently benign, then the expectation is that it will stay benign for life (if I understood this right) but I will still have to have regular CT scans to check  (ok, I don't get that).  And if it comes back cancer, the op is already booked. So that's where I am now. 

 

Apparently they can tell from the blood that the cancer hasn't spread yet, so I understand that I am also fortunate in that and have more chances, than others might.   I prefer to think that I don't have Stage 1 cancer!  - at least until it is confirmed that I do - and as only my hubby, best friend and boss know about this, I can keep it at that, as people seem to have so many worries in this covid time that i dont want to add to them unneccessarily. 

 

I found your comments on foods interesting.  I have always disliked 'hot' foods and fruit (for the acid in it), so I cook very simply.  From the pneumonia, I lost my sense of taste and smell and it is only back for very strong things.  However I love the texture of chocolate, so indulge in a small piece daily!  So sorry to hear that it doesn't taste good for you- what about the texture?  I agree about the coffee ( and tea).  A long time ago, coffee stopped being a drink that would keep me awake - I am very capable of falling asleep immediately after it!   But I am not fond of plain water or other cold drinks, especially lemonades.  So that might be a change I would need to gradually introduce. 

 

I am about 250km from the urologist  (in rural Vic),  and so the hospital that this will take place at is in Ballarat.  It is quite a day out to go there, and so I am grateful to the telemedicine now.  The urologist is lovely and very patient with me -  and my reticence.   

 

Last week, I did a tele med call to an extended family member who is a GP in Melb for a second opinion.  She said that I should have it out and not worry about the 15% chance that there is no need to. It took me a couple of days to then email the urologist to ask more questions and then yesterday to face looking up this site.  I don't cope with things like this very quickly.  So I very much appreciate your time in commenting, as I might not have faced up to the things you have written if you hadn't done so.   

 

Thanks and blessings

 

 

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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

The kidney might definitely be the cause of your tiredness. After I had the kidney removed, I was pretty well straight onto the chemo, which causes fatigue and tiredness, so, no it hasn't stopped.

If the results of the biopsy come back as negative, they will still do periodic scans to make sure there's been no more growth. Just because its benign at one time, doesn't necessarily mean it will stay that way.

Tell other people only if you want to. Sometimes though, others may be able to offer support in ways your hubby can't help. And sometimes its good to talk to someone who isn't so close to you because you can talk to them more easily without breaking down & crying.

The texture of chocolate remains the same, it's just the taste that was altered. Even though it doesn't taste as good, I still indulge sometimes because it's still nice enough. 😉 I'm the same as you with coffee, it's never kept me awake. I used to love drinking plain water, but because I have so much of it, I now add a small amount of diet cordial, or sometimes I add slices of lemon, orange or cucumber, just for a fresh taste. Warm water is a must for me, besides it's more easily digested.

That's a hell of a round trip for a medical appt, so yeah, thank heaven for telehealth. (I love the Victorian countryside, before covid, we used to do alot of trips to Adelaide & Canberra to visit family.) Please let me know the results of your biopsy. My fingers are crossed for you.

Cheers
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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi @JC56

 

I was diagnosed with Stage 1 Kidney Cancer in May and had an op to remove it in June. Mine was slightly smaller (3.3cm in scans, then revised to 2.8cm once removed.) I was Stage 1a, hadn't spread, phew. The only fly in the ointment, it was Gradee 3, so relatively aggressive, although caught small. Like you, mine was an incidental finding when I went for a CT scan for suspected appendicitis (which turned out to be an appendix stone, didn't even know that was a thing!) On reflection, I maybe did have some minor symptoms that I ignored...5 months earlier at Christmas I felt a bit run down, had a bit of a sore belly/side and put it down to having just moved house (moving lots of boxes and furniture) and Christmas/New Year overindulging in food and alcohol. The aches and pains went away just after New Year, so I did nothing about it, and I had no recurrence even after my diagnosis.

 

My Urologist took one look at my scan and said definitely cancer, it's almost never anything else. He said we had three options, do a biopsy now, do nothing and scan in a few months time and see how much it has changed, or take it out. His advice was, I am relatively young (47) and mostly healthy, we could to a biopsy but we are already very sure it's cancer so a biopsy might increase the risk of it spreading. We could scan and wait, but even if it was slow growing it would need to come out some point in my life. I could wait until it got bigger but there wasn't really much point, I was just increasing my risk of it spreading, so surgery was really my only sensible option. I definitely didn't have it 3 years earlier as I'd had other CT/MRI imaging for my back surgery, in his opinion I'd probably had it about 6 months (so just before Christmas...)

 

I had a partial nephrectomy (left) which removed the tumour and a small amount of kidney. I'm lucky in that I have more than 1.5 kidneys left. Surgery was a hand assisted laprascopic partial nephrectomy. I have a scar vertically from just under my belly button to just above it, maybe 6-8cm. I also have a 1cm scar about 8cm above my belly button (If I tense my core muscles it looks like a second belly button!) I also have a small 2cm scar down at the bottom left of my abdomen, roughly where underwear would sit. There's a drain hole mid way between those two small scars. Three small scars, one a bit bigger, but not huge.

 

Radical Nephrectomy might be a bit different. In terms of recovery, Radical probably has different complications than partial...my repaired kidney started to leak. I had a lot of blood in my urine, and scans revealed urine pooling in my abdomen. I went back in to get a kidney stent inserted, which stayed in for 6 weeks. You won't have the risk of that complication if your kidney is removed (you may have different issues obviously!) Radical is also usually a shorter op, it's quicker to take a kidney out than it is to repair one.

 

The stent was a bit limiting for me. It got installed at week 2 and was in for 6 weeks. My surgeon told me to avoid all exercise until the stent was out. This is because any increase in heart rate increased my chance of developing a bleed in the repaired kidney. This may or may not be the case for radical nephrectomy, I don't know. I generally felt OK, I was off pain meds about 10 days post op. I could maybe have come off sooner, but chose not to. I was told to avoid lifting anything over 2Kg for 6 weeks, then no more than 10Kg until 12 weeks. After that, slowly return to normal activity. Most of this is to allow your internal wounds to heal and avoid complications with hernias immediately and further down the line. At 12 weeks I moved some floorstanding speakers in the house. Maybe 20Kg each, moved them 20 meters. My belly was aching the next day. I'm a bit more careful now, but I can pick up my 13Kg dog and carry him with no issues (he's deaf and blind so gets himself into stupid places and needs picked up!)

 

I was in hospital for 5 days I think (might've been 4.) When I came out I could look after myself...toilet, cleaning myself, making light meals. I didn't drive for 6 weeks through choice. You also feel every single lump and bump in the road. You shouldn't drive on the strong pain killers, so that may be limiting. My doc said I could go back to my desk job after 4-6 weeks, but we pushed that back 2 weeks due to the stent.

 

I now do a lot of walking, up to 10km per day. I feel generally OK, but still need to build up some fitness. I've got a bit of a sore back this week, so I'm going to go see my GP. I have a slight complication in that I had back surgery 3 years ago as well, so I may have sore back that is a sore muscle, a disc issue or my slight pain could be kidney related. I had been to my GP once in 10 years prior to cancer, but now I'm not going to mess about and at least talk to a medical professional rather than keep it to myself. I get the odd twinge around my main scar. 1/10 pain for a fraction of a second if I twist the wrong way too quickly. In the grand scheme of things, nothing really.

 

Eating and drinking...no change. I had nausea in hospital as they gave me morphine. As soon as they stopped that, the nausea stopped. No issues with lack of appetite. My surgeon told me to eat a normal, healthy diet, nothing special for kidneys. Drink plenty of water, keeps the kidney's flowing. As for drinking, again, he told me nothing special other than plenty of water. Alcohol is also fine, but as a doctor he insisted alcohol in moderation. He said this was general doc advice rather than specific to kidney cancer. He also told me to wait until the stent was out before drinking alcohol, but once that was out, just normal medical advice/guidelines.

 

I found my appetite went down a bit as I was sitting around a lot. I lost about 8Kg in total, most of it would be muscle mass. I lost a lot of fitness in a short time. I used to walk loads, jog a bit, and play football. I'll get back to all of them, but getting that fitness and stamina back is a slow process. I'm doing the walking but feel the running and football are still beyond me. I've played two rounds of golf using a buggy...no issues with swinging a golf club. Shot distance is a bit less, but that's fitness rather than feeling restricted in any way.

 

I have been fortunate and didn't need any medication for cancer, so I don't have any of the side effects these treatments can cause. The operation itself was relatively straightforward for me, I did have some complications, but in retrospect, I was really lucky. No allergic reactions, no wound infections, etc.

 

Sleeping...for the first week I slept on my back. I then slept on the opposite side from the opp (so my right) but now I can sleep any way I want. I might get the odd slight twinge if I'm stretching that main scar but it lasts as long as you are tugging your skin and goes away if you move. It never wakes me up. For the first few weeks I did need to get up during the night to pee. This went away and now I don't have any urgent need to go, or wake up because of it. I probably drink more water than I used to, so I do go slightly more often than I used to but that's probably no bad thing. It's not something that bothers my sleep any more though.

 

Gardening...I'm mowing the lawn, pushing a petrol mower. Maybe 300/350sqm of pretty flat grass. I have planted some pot plants, repotted others, etc. Nothing too heavy, no digging potatoes, laying turf, etc, but I've carried big bags of soil recently with no ill effects. Just be a bit careful and use a barrow to move things that you might've picked up before, etc. I was mowing the lawn at about 8 weeks, post op but that made me tired rather than sore.

 

Other than my sore back...my next step in treatment is an abdominal ultrasound in December. 6 months from my operation. My Urologist has said he hopes there is no recurrence, and if that is the case I will have an abdominal ultrasound then CT scan rotating every 6 months for at least 5 years. Quite probably for life.

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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi Budgie

Thanks for your reply, the advice  and your good wishes- it is really appreciated.

  

I had two days CRT teaching this week. It's very unusual, especially this year, when I have had now a total of 4 days work since the end of T1.  I couldn't deal with this stuff yesterday either.  However things had also moved quickly on Thurs late arvo and I now have the biopsy next Friday so have to have more blood tests on Monday.  The biopsy means we will leave home at 4 am - so that adds another stress.  We won't see much of the countryside - just hoping we don't  miss seeing any kangaroos out on the road too!    Not sure how long it takes to get the results from that, but the op has been booked for December, anticipating the results.  

 

Interesting what you said about warm water.  I haven't tried that yet. I sometimes have boiling water though - using the steam to control  light asthma - it works for me and I prefer it to puffers.  Then I drink it when its cooler.  I also make my own (non-diet) cordials from orange and/or lemon, depending on what is available - and didn't realise that that would count as 'water' .  I have never liked strong cordial so it may not be as bad as what you get in the commercial varieties.   

 

Not sure where you are, but it sounds like you moved around a fair bit of Australia before covid. What sort of country do you like best?  I like going to the high country, but that's about a 7 hour journey from here!   

 

Hope you haven't been in the areas hit by heavy rain today. 

 

Cheers

 

 

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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi Alfham

Thank you so much for your detailed information.  It has been really helpful, as you are about 6 months ahead of me.

 

I hadn't heard of these additional stages to stage 1.  

I hadn't heard that the biopsy adds a risk of spreading cancer if it is so, but I was originally told, it will be cancer, so the best course is to have the kidney and growth removed. That's the same as you.  I just can't get my head around the 15% chance that it might not be cancer, and that op seems so radical and final.  You must be tougher than me! 

I also hadn't heard about wound infections!  (Scary) 

 

I appreciate the info about the things that you could lift and when .  This will be important as I currently work in the garden and on farm daily, as well as household chores.  Sounds like I will have a 'holiday' from all that over summer and possibly into autumn!

Good to hear about what you could eat and drink. That makes life a bit easier. 

Also how you managed the sleeping and the amount of walking you now do.    

 

Thank you for taking the time to send me all these details.  I really appreciate knowing what may be ahead and now have to think about how I will have to adapt to it. 

 

I hope  your sore back has eased now and that the 6 Dec brings a great result for you after what you have been through already.  

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Re: looking for advice about the op to remove a growth and kidney - or to go with it being watched

Hi @JC56,

What age group do you teach, & is there a particular subject? Where abouts is your farm, & what crops do you grow? Is it a very big farm? I wish you safe travels on Friday, hopefully with no roos to bother you. I haven't had a biopsy so I'm not sure how long the results will take to get back to you. People say that's the worst time, waiting for the results. Try to keep your mind occupied on other things. Though, by the sounds of it, you're always busy on the farm, so hopefully that won't be too hard.

At the moment, I am living in Point Cook, west of Melbourne city, & lucky enough to not get too much rain. I was born in Newcastle, joined the Navy at 18, met my husband, also in the Navy, in Darwin. We have travelled Australia, being posted every 2 years, & done alot of camping. I also like the high country, but I spent my youth at the beach, & so the coastal areas will always hold a special place in my heart . Australia has so many beautiful places.
Cheers 🙂
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