3 months scan results not so good

after removal of huge tumour and left kidney we had scans! Today's results showed a small spot on his right kidney.... oncologist advised us to see if it grows over the next 3 months and if it does burn it with some kind of needle! I just broke down! I am so so scared! We just got through this and now just 3 months later this? I

 

so worried...

Comments

  • todd121
    todd121 Member Posts: 1,448
    Specialist Type?

    Are you seeing a medical oncologist or a urologic oncologist? You will get the best care if you can find a medical oncologist with expertise in kidney cancer. It's not a common cancer and you really need someone very experienced with kidney cancer.

    A metastasis to the far kidney is not very common.

    Small spots (masses) in the kidney are quite common. If it's very small, it may very well be a cyst. They are common and get more common as we age.

    If you are seeing a urologic oncologist, I'd advise finding a medical oncologist that does research and sees kidney cancer patients regularly. Urologic oncologists are urologists first (surgeons) and do not generally treat metastatic disease nor do they normally keep up on issues related to metastatic kidney cancer. There've been a lot of advances in this field in recent years. A good medical oncologist that specialists in kidney cancer will see 10-20 kidney cancer patients a week. A regular medical oncologist may not see that many in a year or even in a career. A urologic oncologist will see even fewer and will generally not follow anyone that gets tumors in other parts of the body, because that's usually the job of a medical oncologist (that uses drugs to treat metastatic disease).

    Keep your chin up. It always seems worse than it is, particularly in the beginning. The dread and worry can make things so much worse.

    Best,

    Todd

  • todd121
    todd121 Member Posts: 1,448
    edited August 2017 #3
    Specialist Type

    Genetic kidney cancer is a special kind that has been studied extensively at NIH. It's very well understood and probably the most understood type of kidney cancer. Tumors that show up in both kidneys are/can be indications of genetic kidney cancer.

    This is why you might consider getting a consult from a medical oncologist that specializes in kidney cancer. If they can determine it's genetic kidney cancer, the treatment and prognosis may be way better than if it isn't.

    Todd

  • APny
    APny Member Posts: 1,995 Member
    edited August 2017 #4
    Cysts are very common. I have

    Cysts are very common. I have on on each kidney and we're simply monitoring them for growth/changes. So far so good. As Todd said, mets to the other kidney and/or cancer in each is very uncommon. Don't assume the worst. I know it's easier said than done but there's a very good chance it's a cyst.

  • todd121 said:

    Specialist Type

    Genetic kidney cancer is a special kind that has been studied extensively at NIH. It's very well understood and probably the most understood type of kidney cancer. Tumors that show up in both kidneys are/can be indications of genetic kidney cancer.

    This is why you might consider getting a consult from a medical oncologist that specializes in kidney cancer. If they can determine it's genetic kidney cancer, the treatment and prognosis may be way better than if it isn't.

    Todd

    We are seeing a surgical and

    We are seeing a surgical and medical oncologist and he is one of the 10 best in the world it says! The mass is less than 1 cm....he says that we should not worry if it doesn't grow we leave it alone, if not he will burn it with a needle?! I am just so scared! He had a 20com and10lbs tumour on his left kidney that was removed! I am scared! 

  • I am

    I am

    just so worried cause before the surgery we worried it would spread and it did not and now they find this... :( 

  • foxhd
    foxhd Member Posts: 3,181
    edited August 2017 #7
    I think

    it would be highly unusual for the first met to show up in the other kidney.

  • foxhd said:

    I think

    it would be highly unusual for the first met to show up in the other kidney.

    So I should not worry? There

    So I should not worry? There is nothing else but this....

  • Skagway Jack
    Skagway Jack Member Posts: 224
    edited August 2017 #9
    Common enough.

    I have a roughly 8mm cyst on my remaining kidney.  It was actually present in my early scans and has been tracked consistently since the removal of my right kidney.  It has not grown and the Docs tell me its nothing to worry about.  Like others have said tumors in both kidneys are uncommon except in cases of a genetic link.  Hang in there!

     

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    edited August 2017 #10
    In regard to the finding on

    In regard to the finding on the other kidney, very often small cysts are found on kidneys.  Personally, I have a ton on mine, but the scans I took both before and after my partial neph have categorized them as just that, fluid filled cysts.  Someone else with more knowledge of scans might want to jump in, but I would assume that the scan your husband took was done without contrast, to be as gentle on his remaining kidney as possible.  Is it possible that without the contrast material, it's harder to differentiate between a fluid filled cyst and something more complex?

    In regard to taking care of the 1cm "thing" on his remaining kidney, I did a decent amount of research on the method your doctor was describing.  It's called ablation therapy and there are two modes that are currently used.  The "burning" one you mention is called radio frequency or RF ablation.  Using needles that are guided by ultrasound (or CT or MRI, depending I guess on the radiologist and the doctor), the radiologist "cooks" the tumor or lesion and that kills it.  The other method is called cryoablation.  It's the same theory, but instead of cooking the tumor, they freeze it multiple times and that kills the cells.  It's generally done on an outpatient basis and I'm told it's imilar to getting a biopsy in terms of discomfort level.  As an aside, my 90 year old mother-in-law had a kidney biospy about three months ago for a different kind of kidney situation.  I was allowed to stay in the room with her (gowned and masked of course) and saw how they performed the biopsy.  She had absolutely no reaction to it and 24 hours later, she was fully recovered from that experience.

    You should also know that the wait and see approach is the standard of care in kidney spots that size.  Mine was originally diagnosed in late 2013 and I didn't have anything done until mid-2016 when the little guy grew from 1.5cm to 1.7cm.

    I'm not going to be foolish enough to say not to worry, because that's impossible.  But your doc seems to be on top of this.

  • In regard to the finding on

    In regard to the finding on the other kidney, very often small cysts are found on kidneys.  Personally, I have a ton on mine, but the scans I took both before and after my partial neph have categorized them as just that, fluid filled cysts.  Someone else with more knowledge of scans might want to jump in, but I would assume that the scan your husband took was done without contrast, to be as gentle on his remaining kidney as possible.  Is it possible that without the contrast material, it's harder to differentiate between a fluid filled cyst and something more complex?

    In regard to taking care of the 1cm "thing" on his remaining kidney, I did a decent amount of research on the method your doctor was describing.  It's called ablation therapy and there are two modes that are currently used.  The "burning" one you mention is called radio frequency or RF ablation.  Using needles that are guided by ultrasound (or CT or MRI, depending I guess on the radiologist and the doctor), the radiologist "cooks" the tumor or lesion and that kills it.  The other method is called cryoablation.  It's the same theory, but instead of cooking the tumor, they freeze it multiple times and that kills the cells.  It's generally done on an outpatient basis and I'm told it's imilar to getting a biopsy in terms of discomfort level.  As an aside, my 90 year old mother-in-law had a kidney biospy about three months ago for a different kind of kidney situation.  I was allowed to stay in the room with her (gowned and masked of course) and saw how they performed the biopsy.  She had absolutely no reaction to it and 24 hours later, she was fully recovered from that experience.

    You should also know that the wait and see approach is the standard of care in kidney spots that size.  Mine was originally diagnosed in late 2013 and I didn't have anything done until mid-2016 when the little guy grew from 1.5cm to 1.7cm.

    I'm not going to be foolish enough to say not to worry, because that's impossible.  But your doc seems to be on top of this.

    Thank you so much for

    Thank you so much for shedding some light!yes they did use the contrast dye that made him feel really hot ....so I don't know! His oncologist said it's a mass but did not say it was a tumour or cyst....I am very positive but I am worried as I almost lost him due to the size of tumour removed

  • DreamOnDeb
    DreamOnDeb Member Posts: 112
    edited August 2017 #12
    Hi.  We were also told by my

    Hi.  We were also told by my husband's urologic oncologist that more than 50% of people have cysts on their kidneys and aren't even aware of it.  Please try not to worry.  I know it's easier said than done, but it may very well be just a cyst.

  • Hi.  We were also told by my

    Hi.  We were also told by my husband's urologic oncologist that more than 50% of people have cysts on their kidneys and aren't even aware of it.  Please try not to worry.  I know it's easier said than done, but it may very well be just a cyst.

    I am trying so hard not too!

    I am trying so hard not too! Thank you

  • DreamOnDeb
    DreamOnDeb Member Posts: 112
    What did his pathology report

    What did his pathology report say?  What type of RCC was it?

  • CRashster
    CRashster Member Posts: 241
    Last year

    I lost my left kidney over a year ago, now. Every scan since shows a small cyst on my other kidney and a spot on my lung. Every time. A small cyst on my kidney and a spot on my lung. We watch it. My doc shows not to worry and I don't.