Just found out I have Kidney cancer

Limelife50

Limelife50 said:

RFA John
i think from all my research cryoablation has a higher success rate compared to radio frequency ablation which is the procedure i had.The reason i did RFA was because the hospital where all my records are does not perform cryoablation and i did not want to lose time trying to get everything transferred to another facillity,but RFA success rates are decent enough for smaller tumors,also the radiologist who performed the procedure informed me he has done RFA to tunors as large as 6cm with very succesfull results.

for my nephrectomy i was out of work for 9 weeks but it took a good four months to get all my energy back,as far as the RFA ,I had it done last week and will be returning to work tommorow,still have a little pain but i am good eough to go.as far as the procedure you choose i hope choose not to do a partial on your only remaining kidney since you run a higher risk of kidney failure,also you lose more kidney tissue with a partial

Texas_wedge

Limelife50 said:

for my nephrectomy i was out of work for 9 weeks but it took a good four months to get all my energy back,as far as the RFA ,I had it done last week and will be returning to work tommorow,still have a little pain but i am good eough to go.as far as the procedure you choose i hope choose not to do a partial on your only remaining kidney since you run a higher risk of kidney failure,also you lose more kidney tissue with a partial

Location of tumour
John, in among the first-class advice Liz gave you above, she asked about location and you queried what that is about.

There are several factors. it could significantly affect the forms of treatment that are possible (e.g. the options Mike (Limelife50) was commenting on - surgical by partial nephrectomy v high energy or cryoablation methods).

It might mean your adrenal gland(s) could be left intact, if the tumours aren't at the top of your kidneys.

It will also affect the possibility of metastasis (spread) to other body parts, depending on whether the tumours have got into certain parts which make it more likely that cancer cells have got into your bloodstream.

Your docs will be sure to go into all of that with you in deciding on the best way to tackle it.

Limelife50

Texas_wedge said:

Location of tumour
John, in among the first-class advice Liz gave you above, she asked about location and you queried what that is about.

There are several factors. it could significantly affect the forms of treatment that are possible (e.g. the options Mike (Limelife50) was commenting on - surgical by partial nephrectomy v high energy or cryoablation methods).

It might mean your adrenal gland(s) could be left intact, if the tumours aren't at the top of your kidneys.

It will also affect the possibility of metastasis (spread) to other body parts, depending on whether the tumours have got into certain parts which make it more likely that cancer cells have got into your bloodstream.

Your docs will be sure to go into all of that with you in deciding on the best way to tackle it.

Hi Tex
no Texas the two procedures i had mentioned had more to do with the smaller tumor,but at the same time why not consider these treatments for larger tumors ,of course without taking any risks due to location.Iwas only floating some ideals for consideration .

250xcfw

Limelife50 said:

Hi Tex
no Texas the two procedures i had mentioned had more to do with the smaller tumor,but at the same time why not consider these treatments for larger tumors ,of course without taking any risks due to location.Iwas only floating some ideals for consideration .

Procedures
I asked both my doctors about the different procedures and both agreed that the one kidney with the large growth would be a standard kidney removal. So the other kidney with the small growth I assumed would use cryo or rfa, but they agreed again this would also be a partial nephrectomy. So I asked why not one of the newer procedures? “ The removal of the infected piece of kidney is the safest and has the best results out of all the procedures”.
So is this true? Also they do all of the different procedures at the hospital and other experimental treatments. The latter surgery will be with the DaVinci if that makes a difference.

Also had my 3rd set of CT scans and everything looked clear again other than both kidneys.

John

250xcfw

Limelife50 said:

Hi Tex
no Texas the two procedures i had mentioned had more to do with the smaller tumor,but at the same time why not consider these treatments for larger tumors ,of course without taking any risks due to location.Iwas only floating some ideals for consideration .

Procedures
Double post

Texas_wedge

250xcfw said:

Procedures
I asked both my doctors about the different procedures and both agreed that the one kidney with the large growth would be a standard kidney removal. So the other kidney with the small growth I assumed would use cryo or rfa, but they agreed again this would also be a partial nephrectomy. So I asked why not one of the newer procedures? “ The removal of the infected piece of kidney is the safest and has the best results out of all the procedures”.
So is this true? Also they do all of the different procedures at the hospital and other experimental treatments. The latter surgery will be with the DaVinci if that makes a difference.

Also had my 3rd set of CT scans and everything looked clear again other than both kidneys.

John

Choice of procedure
That advice doesn't surprise me at all and seems consistent with all we think we know about this disease (these diseases!)

If they have all the options available there and their recommendation is for a partial with da Vinci I feel sure they will have given the matter due consideration and genuinely believe that's best for you. Assuming they have experience with the robot, I think it's great that they can do that for you.

I had a rad neph in December and a second major open 6 weeks ago for a new tumour. The situation is a bit different from yours since this was recurrence in the renal bed, not affecting my remaining kidney, but questions arose as to procedure. I asked about HIFU, cryo, RFA and other high energy techniques but was advised that the open surgical route was the best choice for me (though that may have been chiefly due to the location, very close to my spine, with too much risk of collateral damage).

Your 3rd set of clear CT scans sounds like great news. So, a successful robotic assisted partial should see you on the path back to the good life John. Best of luck with it.

Limelife50

Texas_wedge said:

Choice of procedure
That advice doesn't surprise me at all and seems consistent with all we think we know about this disease (these diseases!)

If they have all the options available there and their recommendation is for a partial with da Vinci I feel sure they will have given the matter due consideration and genuinely believe that's best for you. Assuming they have experience with the robot, I think it's great that they can do that for you.

I had a rad neph in December and a second major open 6 weeks ago for a new tumour. The situation is a bit different from yours since this was recurrence in the renal bed, not affecting my remaining kidney, but questions arose as to procedure. I asked about HIFU, cryo, RFA and other high energy techniques but was advised that the open surgical route was the best choice for me (though that may have been chiefly due to the location, very close to my spine, with too much risk of collateral damage).

Your 3rd set of clear CT scans sounds like great news. So, a successful robotic assisted partial should see you on the path back to the good life John. Best of luck with it.

Good luck John
hi John just want to wish you the best outcome on your upcoming procedures,now let me share what both my urologist and radiologist both told me about my options when my second tumor was discovered.First off it was small only 1.4 cm so the thinking was to preserve as much kidney tissue as possible in the event i got more tumors in the future.Were their risks with the procedure i chose ,yes there was but at the same time i am thinking long term and the risks were minimal.The downside of a partial neph is that you lose more tissue but at the same time it is less risky than the choice i made but also at the same time i was told i would retain almost the same level of function if not the same as before.I never would try to inspire anyone as to what decisions to mak, my only agenda is to share my decisions i have made to maybe help people researching their own situation to come to their own conclusions.I also feel we need to educate ourselfs as much as possible concearning our conditions so as to be as strong of advocates as possible for our own health as much as we can,when it comes down to it its our bodies and our lives,good luck!!!!

Limelife50

Texas_wedge said:

Choice of procedure
That advice doesn't surprise me at all and seems consistent with all we think we know about this disease (these diseases!)

If they have all the options available there and their recommendation is for a partial with da Vinci I feel sure they will have given the matter due consideration and genuinely believe that's best for you. Assuming they have experience with the robot, I think it's great that they can do that for you.

I had a rad neph in December and a second major open 6 weeks ago for a new tumour. The situation is a bit different from yours since this was recurrence in the renal bed, not affecting my remaining kidney, but questions arose as to procedure. I asked about HIFU, cryo, RFA and other high energy techniques but was advised that the open surgical route was the best choice for me (though that may have been chiefly due to the location, very close to my spine, with too much risk of collateral damage).

Your 3rd set of clear CT scans sounds like great news. So, a successful robotic assisted partial should see you on the path back to the good life John. Best of luck with it.

one more thing
I sometimes am guilty of posting in a haste without reading what i have typed ,i noticed in my post titled recoveries posted may8th at 1:23 pm i was almost pushy in my opinions,that was wrong and i apologize,everyones situation is different and i should have known better than trying to advocate my decisions on other people,i will be much more carefull in the future, again i was wrong and i apologize

Texas_wedge

Limelife50 said:

one more thing
I sometimes am guilty of posting in a haste without reading what i have typed ,i noticed in my post titled recoveries posted may8th at 1:23 pm i was almost pushy in my opinions,that was wrong and i apologize,everyones situation is different and i should have known better than trying to advocate my decisions on other people,i will be much more carefull in the future, again i was wrong and i apologize

Explanation
You're a well-established member of the team here now MIke and everyone knows you have the best of intentions so I doubt whether anyone will have been upset by what you said, but it was big of you to post your last message.

In your message before, you were dead right on the importance of taking a lead role in one's own health management - very important - and it looks as though John has taken that on board and is acting on it.

250xcfw

Limelife50 said:

one more thing
I sometimes am guilty of posting in a haste without reading what i have typed ,i noticed in my post titled recoveries posted may8th at 1:23 pm i was almost pushy in my opinions,that was wrong and i apologize,everyones situation is different and i should have known better than trying to advocate my decisions on other people,i will be much more carefull in the future, again i was wrong and i apologize

No need to apologize.
I see no reason for apologizes. I've used alot of your information to help me do more research than I could have found on my own.
Keep giving out advice.

Thank you
John

250xcfw

250xcfw said:

No need to apologize.
I see no reason for apologizes. I've used alot of your information to help me do more research than I could have found on my own.
Keep giving out advice.

Thank you
John

Any thoughts
When I go in for my two separate surgeries which kidney should they do first? Small tumor or big tumor?

John

Texas_wedge

250xcfw said:

Any thoughts
When I go in for my two separate surgeries which kidney should they do first? Small tumor or big tumor?

John

Choice?
I imagine they'll be convinced and convincing in what they advise and I'd bet it will be big first, for a variety of reasons.

Sting853

Texas_wedge said:

Choice of procedure
That advice doesn't surprise me at all and seems consistent with all we think we know about this disease (these diseases!)

If they have all the options available there and their recommendation is for a partial with da Vinci I feel sure they will have given the matter due consideration and genuinely believe that's best for you. Assuming they have experience with the robot, I think it's great that they can do that for you.

I had a rad neph in December and a second major open 6 weeks ago for a new tumour. The situation is a bit different from yours since this was recurrence in the renal bed, not affecting my remaining kidney, but questions arose as to procedure. I asked about HIFU, cryo, RFA and other high energy techniques but was advised that the open surgical route was the best choice for me (though that may have been chiefly due to the location, very close to my spine, with too much risk of collateral damage).

Your 3rd set of clear CT scans sounds like great news. So, a successful robotic assisted partial should see you on the path back to the good life John. Best of luck with it.

I'm having a robotic partial nephrectomy and freaking out...
I'm a first-time user so and I’m happy to be in what looks like a very caring group. I envy those of you who have already gone through already what I'm dreading right now. I hope you guys are still doing very well. I fully emphatize with those who have just been diagnosed and those who have experienced recurrence.

I'm 73 , just diagnosed with RCC on R kidney, 4.3 x 4.1 cm mass. From CT scan, lung x-ray, liver enzymes, blood test, etc, still apparently confined to R kidney. One June 14, I will have Laprascopic Partial Nephrectomy (Robotic) on lower part of R kidney. Adrenal glands, lymph nodes, veins will be spared.

My wife and I had already paid for an expensive Alaska Cruise last week of May. The doctor said we should go ahead with that; that it's not an emergency. We’re thankful for that but at the back of my mind I’m wondering whether one month is not enough time for some nasty cancer cells to go wandering. Any ideas on this?

On reason I'm scared is that in my 73 years, the only operation I've had was a 7 minute cataract surgery on my left eye. So I have been Googling everything--it answers many of my questions and settles me down but finding all that information, some truly scary, also freaks me out. I have vowed to stop it now that everything seems to be known and the big date is set.

Sometimes, as a Natural Born Worrier, I begin to worry ahead about recurrence or residual issues. I'm trying to tell myself just to take one step at a time, and not think at all about the aftermath.

I wish you all cancer-free lives ahead!

Sting

Texas_wedge

Sting853 said:

I'm having a robotic partial nephrectomy and freaking out...
I'm a first-time user so and I’m happy to be in what looks like a very caring group. I envy those of you who have already gone through already what I'm dreading right now. I hope you guys are still doing very well. I fully emphatize with those who have just been diagnosed and those who have experienced recurrence.

I'm 73 , just diagnosed with RCC on R kidney, 4.3 x 4.1 cm mass. From CT scan, lung x-ray, liver enzymes, blood test, etc, still apparently confined to R kidney. One June 14, I will have Laprascopic Partial Nephrectomy (Robotic) on lower part of R kidney. Adrenal glands, lymph nodes, veins will be spared.

My wife and I had already paid for an expensive Alaska Cruise last week of May. The doctor said we should go ahead with that; that it's not an emergency. We’re thankful for that but at the back of my mind I’m wondering whether one month is not enough time for some nasty cancer cells to go wandering. Any ideas on this?

On reason I'm scared is that in my 73 years, the only operation I've had was a 7 minute cataract surgery on my left eye. So I have been Googling everything--it answers many of my questions and settles me down but finding all that information, some truly scary, also freaks me out. I have vowed to stop it now that everything seems to be known and the big date is set.

Sometimes, as a Natural Born Worrier, I begin to worry ahead about recurrence or residual issues. I'm trying to tell myself just to take one step at a time, and not think at all about the aftermath.

I wish you all cancer-free lives ahead!

Sting

Keep cruising
Your prognosis is pretty good but it's natural enough to be worried. The reassurance you've had - that the op doesn't need to spoil the trip - should help you to believe that it's not a crisis.

There's always the possibility of spread but with the modest sized tumour you have, its location, the non-involvement of adrenals and lymph nodes and the fact that it's fully contained mean that you'd be extremely unlucky if the next few weeks made any difference. In any case, there's nothing to be done about the possibility in the meantime so try not to worry TOO much.

Your Alaskan cruise is a blessing since it gives you something superb to look forward to and will help to take your mind off the op. It sounds as if you've enjoyed good health so you'll get over it easily if you take it easy for the first few weeks after your operation.

Have a great time in Alaska.

Sting853

Texas_wedge said:

Keep cruising
Your prognosis is pretty good but it's natural enough to be worried. The reassurance you've had - that the op doesn't need to spoil the trip - should help you to believe that it's not a crisis.

There's always the possibility of spread but with the modest sized tumour you have, its location, the non-involvement of adrenals and lymph nodes and the fact that it's fully contained mean that you'd be extremely unlucky if the next few weeks made any difference. In any case, there's nothing to be done about the possibility in the meantime so try not to worry TOO much.

Your Alaskan cruise is a blessing since it gives you something superb to look forward to and will help to take your mind off the op. It sounds as if you've enjoyed good health so you'll get over it easily if you take it easy for the first few weeks after your operation.

Have a great time in Alaska.

Thanks, Texas
You sound very knowledgeable, and your words are reassuring. Were your two surgeries on the same kidney? What was the first one, the rad neph, all about? How bad was the diagnosis? I'm wondering how old you are now and how that event affected your life.

But you sound like a guy who is in control--one worried less about himself and more about others. Something to emulate.

How are you doing now, after your surgery 6 weeks ago? I hope everything turned out well and that you are getting back to normal. God bless!

250xcfw

Texas_wedge said:

Choice?
I imagine they'll be convinced and convincing in what they advise and I'd bet it will be big first, for a variety of reasons.

Going in Tuesday for pre op
Hopefully I'll have all my question answered and a date set to get this over with. I have alot of plans this summer and these surgeries are getting in the way of my summer. I'm trying to put a positive spin on this and use this time to spend with my son and take some time off work. My wife has me working like crazy trying to get all the heavy yard work done before I go in. I'd better go the pool needs cleaned and I need to dig a hole for a tree. I think her plan is to kill the cancer through working it to death.

John

Texas_wedge

Sting853 said:

Thanks, Texas
You sound very knowledgeable, and your words are reassuring. Were your two surgeries on the same kidney? What was the first one, the rad neph, all about? How bad was the diagnosis? I'm wondering how old you are now and how that event affected your life.

But you sound like a guy who is in control--one worried less about himself and more about others. Something to emulate.

How are you doing now, after your surgery 6 weeks ago? I hope everything turned out well and that you are getting back to normal. God bless!

Information
Well, Sting, I'm fairly new to this business but it has a way of focusing the mind and making you pick up some scraps of information as fast as you can, as we've both been doing.

As regards my ops, yes and no! The first was, like yours will be, on the right kidney with no lymph node or adrenal compromise, being at the bottom end. However, the tumour was 9 cm so it was complete removal, not partial. At CT, it was still contained but by the time of operation (5th Dec.) it had got right out, so the surgeon couldn't get clear margins. The pathology report showed stage 4 (the worst stage) and Fuhrman grade 4 (the worst grade) mostly sarcomatoid (the worst histology) and extensive necrosis (the worst condition) so, in short, not very cheerful reading. The more recent op was for a recurrence in the renal bed, near where my kidney had been, so it's labelled as metastatic RCC. A new tumour had grown from zero to 2.5 cm in a few months (it wasn't visible in December). Being that aggressive, my second follow-up CT scan in the next couple of months will be critical. If I considered the "survival calculators" to have any applicability to individual cases I wouldn't be expecting to see my 70th birthday in October. I don't and I shall.

I'm effectively completely back to normal - no meds, no pain, sleep well, eat well, pretty active (played 2 rounds of golf on Wednesday and could have played a third if I'd wanted to). However, we don't yet know what might be in store but I'll cross that bridge when I come to it.

You asked how it's affected my life. Well the only major effect is that I now spend a hell of a lot of time reading, researching and writing about cancer and related topics! I'm rationalising my neglect of other matters with the thought that I need to be as well briefed as possible in advance of my upcoming results in order to ensure I can make the best decisions and move smoothly into the next phase, whatever that shall be.

I envy you the Alaskan cruise. Mind you it's a little like Alaska here in Scotland just at the moment! Have a great trip and good experiences to think about while you're in hospital.

dl650a

Sorry to welcome you to our club.
Hi John,
As others have said, we are sorry that you have to join our club. I was diagnosed in February, but unlike yours mine my right kidney was involved. The kidney was removed 8 weeks ago. I am back at work full time, I tried yoga for the first time last week, and I was able to commute to work on my motorcycle.

This group is great and will give you a lot of information.

Take care,
Ed

Sting853

Texas_wedge said:

Information
Well, Sting, I'm fairly new to this business but it has a way of focusing the mind and making you pick up some scraps of information as fast as you can, as we've both been doing.

As regards my ops, yes and no! The first was, like yours will be, on the right kidney with no lymph node or adrenal compromise, being at the bottom end. However, the tumour was 9 cm so it was complete removal, not partial. At CT, it was still contained but by the time of operation (5th Dec.) it had got right out, so the surgeon couldn't get clear margins. The pathology report showed stage 4 (the worst stage) and Fuhrman grade 4 (the worst grade) mostly sarcomatoid (the worst histology) and extensive necrosis (the worst condition) so, in short, not very cheerful reading. The more recent op was for a recurrence in the renal bed, near where my kidney had been, so it's labelled as metastatic RCC. A new tumour had grown from zero to 2.5 cm in a few months (it wasn't visible in December). Being that aggressive, my second follow-up CT scan in the next couple of months will be critical. If I considered the "survival calculators" to have any applicability to individual cases I wouldn't be expecting to see my 70th birthday in October. I don't and I shall.

I'm effectively completely back to normal - no meds, no pain, sleep well, eat well, pretty active (played 2 rounds of golf on Wednesday and could have played a third if I'd wanted to). However, we don't yet know what might be in store but I'll cross that bridge when I come to it.

You asked how it's affected my life. Well the only major effect is that I now spend a hell of a lot of time reading, researching and writing about cancer and related topics! I'm rationalising my neglect of other matters with the thought that I need to be as well briefed as possible in advance of my upcoming results in order to ensure I can make the best decisions and move smoothly into the next phase, whatever that shall be.

I envy you the Alaskan cruise. Mind you it's a little like Alaska here in Scotland just at the moment! Have a great trip and good experiences to think about while you're in hospital.

Thanks for sharing your information, Texas
You story is an inspiration to weaker people like me. I will try my best to enjoy my Alaska cruise. I have a feeling you are off to a decade or more of life. I'll post again after my June op.

lovinlife23

I too have just been
I too have just been diagnosed with kidney cancer. They found a 4 cm tumor in the upper pole region of my left kidney so they will be removing my entire kidney. My surgery is scheduled for May 21. I am so thankful that the cancer has not spread to any other organs. All the research I have done tells me that rcc is more common in men in their 50's. I am a 30 year old female so I was a little shocked when I researched this disease. However, I feel more comfortable to research what I am facing so I can understand it more when my doctor explains things to me.

Don't feel bad if you don't know the terminology, as this is a learning process for all of us as we go through this. When is your surgery scheduled for?
Take care.