Anyone with recuurent cancer back in another kidney

mukhopadhyay.arka01
mukhopadhyay.arka01 Member Posts: 32
in Kidney Cancer #1

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

Comments

  • jazzgirl
    jazzgirl Member Posts: 240 Member
    #2
    Hello mukhopadhyay

    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
    mukhopadhyay.arka01 Member Posts: 32
    #3
    thanks for the reply

    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
    kite7 Member Posts: 3
    #4
    Hello, I had a radical

    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.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #5
    Oh dear, I am sorry you are

    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
    mukhopadhyay.arka01 Member Posts: 32
    #6
    kite7 said:

    Hello, I had a radical

    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.

    This was some god and new info for me

    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

  • mukhopadhyay.arka01
    mukhopadhyay.arka01 Member Posts: 32
    #7
    Jan4you said:

    Oh dear, I am sorry you are

    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

    I will definitely try your advice

    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

     

  • kite7
    kite7 Member Posts: 3
    #8
    mukhopadhyay.arka01 said:

    This was some god and new info for me

    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

    The original in 2008 was a T1

    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!

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #9
    mukhopadhyay.arka01 said:

    I will definitely try your advice

    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

     

    Ok, I remain unclear,

    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
    mukhopadhyay.arka01 Member Posts: 32
    #10
    kite7 said:

    The original in 2008 was a T1

    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!

    Yours is as close to mine as possible

    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
    mukhopadhyay.arka01 Member Posts: 32
    #11
    kite7 said:

    Hello, I had a radical

    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.

    why is it T3aG3 now?

    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?

  • mukhopadhyay.arka01
    mukhopadhyay.arka01 Member Posts: 32
    #12
    Jan4you said:

    Ok, I remain unclear,

    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 

    No its new and grew 2.5 cm in last 2 years

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

  • mukhopadhyay.arka01
    mukhopadhyay.arka01 Member Posts: 32
    #13
    kite7 said:

    The original in 2008 was a T1

    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!

    They also think there is some genetic issue with me

    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

  • kite7
    kite7 Member Posts: 3
    edited May 2019 #14
    mukhopadhyay.arka01 said:

    why is it T3aG3 now?

    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?

    It was a small cyst when

    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.

  • mukhopadhyay.arka01
    mukhopadhyay.arka01 Member Posts: 32
    #15
    kite7 said:

    It was a small cyst when

    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.

    My wife and Mom are hoping so

    My wife and Mom are hoping so --but the tumour grew 2.5 cm in just 2 years-- did it ever occur to you that if you could have operated earlier you could ahve a simple partial nephrectomy and life would be much easier?

    And you also had a non diagnostic biopsy? they couldnt clearly say that it was cancer!! thats really strange! I will be really worried if they ask me to wait and it gets bigger somehow.

    Thanks for wishing me luck mate! I hope you get fit fast.

    Did the doctors mention any prognosis? I asked when I was diagnosed that I can have a long cancer free life but seems its not true.

    I would really like to know now that it has recurred what are the chances of it spreading further :(

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #16
    I see! Did you have any signs

    I see! Did you have any signs/symptoms?  I am all done seeing my Urology/surgeon after 5 years, but they were watching a cyst in the remaining kidney.

    Just curious...

    Hang in there! We're here for you all the way?

    Oh and did SmartPatients.com have anyone? I think you said no.

    Healing hugs, Jan

  • WeAreWarriors
    WeAreWarriors Member Posts: 12
    #17
    Simple Cyst not simple

    I was told I had a simple cyst 1.5cm. 5 months later at ER I was told there was no way what showed on CT could be mistaken for a simple cyst and it had now grown to a 3.5cm tumor. I'm wondering if too often simple cysts are written off when in fact they are complex? I'm lucky I went back when symptoms came back.

  • mukhopadhyay.arka01
    mukhopadhyay.arka01 Member Posts: 32
    #18
    I have an operation planned on 25th June

    Have an operation planned on 25th June--enucletaion of kidney --so just taking the tumour out and saving as much of kidney as possible. but they have to do a big incision for the operation

     

    That will be painful as from my last experince and will probably take 2 montsh at least to heal up

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #19
    So sorry you are facing this,

    So sorry you are facing this, plus another surgery. i used a lumbar, velcro wrap (for bad backs) that supported my incisions for several operations. It worked. Helped me get UP and down. Plus I wore it to bed. 
    I would put ice packs inside it but against underwear and it reduced the swelling that causes the pain. As a result of using ICE from the very beginning, I needed less opiates, then none. 

    We're here for you! 

    Keep us informed. 

    Sending you COURAG, HOPE and HEALING~

     

    Hugs, Jan

  • mukhopadhyay.arka01
    mukhopadhyay.arka01 Member Posts: 32
    #20
    Operation pushed back 1 more week

    So my operation is pushed back by 1 more week to 1st July :)

    1 more week of less tendion--need to be in the hospital for 1 week and after that I guess rest for 3-4 weeks

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