Newbie here 45 from Oz

Stevo96
Stevo96 Member Posts: 2
in Kidney Cancer #1

Hi everyone. Ive just had the news that I too have cancer of the kidney and it's malignant. it was over the phone due to COVID which wasn't the best.. the tumour is on the edge of my kidney and measure 12mm so pretty small. Obviously I'm really scared and it was a bit of a shock as I'm pretty healthy with no cancer in my family. The urologist told me this on Friday but said he just wants to monitor and rescan it in 6 months time?! I find this bizarre as I've had a quick look on this board and people have had them cut out at that size. He said he's 70% sure it's malignan, he said he won't operate now as he may not be able to locate it? How can that be, it's clear to see on the scan... I may be overreacting but I've decided to go private and ask for a second opinion, that appointment will be next week. I find it strange that they want to monitor when he's already said it's malignant, doesn't that mean that it will spread? Sorry for the questions, I'm still a little shocked. I'm 45 and male.

Comments

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member
    edited September 2020 #2
    Hi Steve.  What the doc is

    Hi Steve.  What the doc is suggesting is called "active surveillance".  I had the same thing for suspected malignant lesion that was found in late 2013.  It was supposed to be 15mm, so, like yours, quite small.  My urologic oncologist suggested the surveillance (scans every six months) because he said there are times when lesions this small turn out to be benign and he did not want to reduce my kidney function if he didn't have.  He did, however, say that if I could not psychologically handle having it inside, he would get it out.  I asked about the risk of growth and spread and he said the risk was extremely small.  So I went with his recommendation.  In April, 2016 (so, 2-1/2 years later), an ultrasound showed it had grown to 18mm, so I had robotic surgery to get it out.  It was chromophobe renal cell carcinoma, a typically slow growing form of kidney cancer that seldom recurs and seldom spreads.  So, the surgery was curative.  Finished my four year scans and x-rays in June with a clean record.

    The second opinion is a good idea.  If you're uncomfortable with the idea of active surveillance if it's still recommended, tell the doctor.  He or she should take your frame of mind into consideration when developing a plan to address your situation.

    Good luck and the folks on this board will be with you the whole way.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
    Welcome to the club

    Welcome to the club which know onr in their right mind would volunteer to join. On the other hand your  presumed tumor is so small that other members  would practically die to trade size and diagnosis with you. You will be fine but just  doctors sometimes like to watch and wait with such a llittle puppy

     

     

    icemantoo

  • eug91
    eug91 Member Posts: 471 Member
    #4
    welcome-

    Sorry you had to join us, stevo, but this is a great forum here. We know what you're going through, so we know you're gonna do great. It's shocking to hear the "c" word - especially at our age. We're here for you if you have questions or just need to vent. 

    You are very lucky that you caught your tumor so early. At such a small size, you don't have to worry about it spreading - no worry about it spreading until after the tumor grows larger than 4cm. 

    Agree with everything BayAreaGuy wrote above. Trust your doctors, but ask questions and definitely don't be afraid to express your opinions. 

    You're gonna do great. You've got this!

     

  • Stevo96
    Stevo96 Member Posts: 2
    edited September 2020 #5
    Thanks for the positive

    Thanks for the positive comments. I've calmed down a bit now. it's great that forums are in place like this, it helps a lot. Thank you again.

  • db8ne1
    db8ne1 Member Posts: 142 Member
    #6
    Watch and Wait...

    Hey, Steve.

    Sorry to hear about your diagnosis.  I had a malignant tumor discovered on my kidney during treatment for Stage 3 colorectal cancer (CRC).  Watched that baby for 18 months (while being treated for the CRC) before having a partial nephrectomy to remove it.  It was small and stage 1.  Had DaVinci robotic surgery and was out of the hospital within 24 hours.  That was in 2014.  No problems since!

    Wishing you all the best!

  • Seanjg
    Seanjg Member Posts: 21
    #7
    Bay Area Guy said:

    Hi Steve.  What the doc is

    Hi Steve.  What the doc is suggesting is called "active surveillance".  I had the same thing for suspected malignant lesion that was found in late 2013.  It was supposed to be 15mm, so, like yours, quite small.  My urologic oncologist suggested the surveillance (scans every six months) because he said there are times when lesions this small turn out to be benign and he did not want to reduce my kidney function if he didn't have.  He did, however, say that if I could not psychologically handle having it inside, he would get it out.  I asked about the risk of growth and spread and he said the risk was extremely small.  So I went with his recommendation.  In April, 2016 (so, 2-1/2 years later), an ultrasound showed it had grown to 18mm, so I had robotic surgery to get it out.  It was chromophobe renal cell carcinoma, a typically slow growing form of kidney cancer that seldom recurs and seldom spreads.  So, the surgery was curative.  Finished my four year scans and x-rays in June with a clean record.

    The second opinion is a good idea.  If you're uncomfortable with the idea of active surveillance if it's still recommended, tell the doctor.  He or she should take your frame of mind into consideration when developing a plan to address your situation.

    Good luck and the folks on this board will be with you the whole way.

    Go private

    Hey Steve, 

    Im Sean,  41 years from Sydney. I had a 15mm growth discovered on CT scan 2 months ago. They said it was 60 to 70 percent chance it was malignant and most likely RCC. I saw a private surgeon named Dr Matthew Winter in Mona Vale. He is an amazing urologcal surgeon. He performed a Robotic partial nephrectomy on me 1 week after renal mass was discovered. The surgery was fine, not much pain but some discomfort. The tumour was removed with about 10 percent of my kidney. I got the results 1 week later. The tumour was totally benign, no trace of any malignancy. No chance of recurrence. When they first told me they had discovered it my world came crashing down around me. Quite a few of these good folks here have me some wonderful support. I know how you are feeling right now and my heart goes out to you. But a tumour that small is almost definitely  going to be fine. Whether its malignant or not it can easily be treated and the surgery will be curative. Go see Dr Winter if you can. He may very well be the best Robotic nephron surgeon in Australia. He even gave me a discount. An absolute legend. Hang in there mate. You'll be ok

  • Deanie0916
    Deanie0916 Member Posts: 616 Member
    edited September 2020 #8
    Hi please know that your tumour is small

    I agree with everyone's advice above. My thoughts and prayers are with you. It's so hard not to worry and harder to wait. 

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