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Anyone with recuurent cancer back in another kidney

mukhopadhyay.arka01
Posts: 26
Joined: May 2019

Hi Guys,

Anyone in this forum who had cancer recurring back to another kidney? what kind of treatment did you took and what are the prognosis after this?

Did anyone go for a kidney transplant? I have heard immunosuppresants given during kidney transplant really brings your immune system down and there is very very high risk of the cancer becomming fatal at that time?

 

Anyone taking dialysis here? How long have you been doing that? Looking for some replies and advices

jazzgirl's picture
jazzgirl
Posts: 111
Joined: Nov 2017

Sorry I can't be much help - I was born with only one kidney, so when I was diagnosed, I asked about transplant if I should need a radical nephrectomy (fortunately they were able to do partial). My oncologist/urologist/surgeon said they cannot consider transplant until someone has been cancer-free for five years. So that started my worries about dialysis, but fortunately I have not faced that. I hope others can respond with more information. Take care - 

mukhopadhyay.arka01
Posts: 26
Joined: May 2019

Thanks ! I was not getting much repsonse and I was thinking I am one of those unlucky ones that have the bad luck of cancer coming back to the other kidney!

Even I hope to get a partial nephrectomy so that I dont need Dialysis

 

how long it has been when you have been operated?

kite7
Posts: 3
Joined: Oct 2017

Hello, I had a radical nephrectomy in 2008, biopsy confirmed it returned in other kidney in 2018 (after 3 years of active surveillance of complex cyst). I had an partial nephrectomy/auto-transplant (they removed the kidney, resected the tumour and transplanted it back) earlier this year for a T3aG3 clear cell RCC as the tumour was centrally located. I had dialysis during recovery but I'm now getting by quite well on about 1/3 of one kidney at around 20 GFR. I was also told 5 years cancer free before being eligible for a transplant. Hope this helps! I wish you all the best for your surgery.

mukhopadhyay.arka01
Posts: 26
Joined: May 2019

Hi Kite,

So sorry to hear that! So you were T3A when diagnosed in 2008? Also why so complex way of partial nephrectomy? I mean was it in a place that cant be operated easily--normally partial nephrectomy can be directly done, right?

I would also say no to kidney transplant--I know someone personally who had cancer relapsing after kidney transplant --personally I would not do a transplant unless I really need it.

People can lead healthy (though restricted life) with dialysis

kite7
Posts: 3
Joined: Oct 2017

The original in 2008 was a T1, I too thought I’d seen the back of it. They think there may be a genetic element for me as I was 30 at first diagnosis. The second one was right in the middle of the kidney, so it was a complex surgery to try and save kidney function – otherwise yes it would have been a normal partial.

I think it’s pretty rare to come back in this way, but obviously it can happen. My little kidney now sits inside my right hip, its all very surreal but I am grateful! Have you met with your surgeon about your partial? I hope it will be straightforward for you can retain good kidney function, apparently a little kidney can go a long way!

mukhopadhyay.arka01
Posts: 26
Joined: May 2019

Yours case is as close to mine as possible

I was @28 years diagnosed in 2011 with left kidney cancer--smaller than 2.5 cm 00Stage T1A N0 M0 and left radical nephrectomy done--I am  now thinking whether it was a rigt decision or not

I got again checked this time in 2019 May and they are mentioning it is a complex cyst 2.5 cm in right kidney suspected for cancer.--I will see Surgeons and radiologists agin tomorrow to discuss further

Mine is in right kidney upper lobe

Lets see what they suggest

Did they mention anything about prognosis?

mukhopadhyay.arka01
Posts: 26
Joined: May 2019

The Doctor also said about a genetic element and said they will send it to the labs for testing --did they do somethinmg like that for you?

I am worried about recurrence to other parts of the body even after the operation

mukhopadhyay.arka01
Posts: 26
Joined: May 2019

why is it classified as T3aG3 now? And how big was the cyst? They observed it for 3 years? Why so? during initial diagnosis was the cyst normal? They had to do biopsy? Many doctors dont want to do biopsy and also after biopsy they want to do operation as fast as possible

I am not finding as many people as you and me in forums and wanted to understand what's the prognosis after this?

kite7
Posts: 3
Joined: Oct 2017

It was a small cyst when first picked up on ultrasound in 2015, I had scans every 6 months, it changed to complex cyst/mass. I had a non-diagnostic biopsy in 2017, a second confirmed RCC late 2018. When I had surgery, it was 4cm and had renal vein invasion which is why it is a T3a. I don’t think my case is the norm though, plenty of people have harmless cysts which are just incidental finds, I hope this is the case for you.

Jan4you's picture
Jan4you
Posts: 1296
Joined: Oct 2013

Oh dear, I am sorry you are going through this. Sorry for the lack of responses. Maybe others just dont' have any information for you. Did you do a search on here?

And also try, Smartpatients.com 

They may be able to help too. 

Makes me wonder if these cycts can change or get missed as cancer?

 

Please let me know how you are doing and what you are learning.

Sending you hOPE, CALM and healing hugs

Jan

mukhopadhyay.arka01
Posts: 26
Joined: May 2019

Thanks Jan! I did a search and seems like its not common for cancer to come back to otehr kidney :(

I was T1 with a small tumour --hence never thought there was a chance of it to come back before 15 years at least 

But its notalways statistics

 

Jan4you's picture
Jan4you
Posts: 1296
Joined: Oct 2013

Ok, I remain unclear, mukhoadjuau, do you have cancer or are you just wondering? If it was/is a cyst do you always know it was there

from the beinning of your Kidney cancer diagnosis?

Jan 

mukhopadhyay.arka01
Posts: 26
Joined: May 2019

No it came new in last 2 years as the scan from 2 years back doesnt show anything in right kidney

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