Small Renal Mass Recurrence

JoeMoose
JoeMoose Member Posts: 19

I had a 1.7 cm renal mass removed from my right kidney in July 2014... I was scanned on Jan 13th and no most recently Oct 13th. Apparenty they found another mass less than 1 cm. When they reviewed the Jan 13th scan they found it was there as well. (It was missed initially but when the MRI in Jan 13th was completed they found it) The mass has not grown between this period of time. I am trying to find out if this was on my original MRI back in June of 2014 - I do not know that yet. 

My Dr called me Friday(he is out of the country educating other Drs in China). He said this is unrelated to the initial mass as it had negative margin when it was removed. Plus this is in the middle of kidney. He does not want to remove it and wants to do active surveillance. Plus he said with the scan tissue and size it would be difficult to find. 

I am 46 years old and just want to understand if anybody else had a similar situation... thanks 

Comments

  • APny
    APny Member Posts: 1,995 Member
    They are currently monitoring

    They are currently monitoring two small sub-centimeter growths (cysts, lesions, take your pick, lol), one on each of my kidneys. They think they were there prior to my surgery as well and since they're stable and not growing we're leaving them alone but watching them. Cysts are common so I wouldn't be terribly concerned at this point.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    APny said:

    They are currently monitoring

    They are currently monitoring two small sub-centimeter growths (cysts, lesions, take your pick, lol), one on each of my kidneys. They think they were there prior to my surgery as well and since they're stable and not growing we're leaving them alone but watching them. Cysts are common so I wouldn't be terribly concerned at this point.

    Wel, Joe, I am sorry you are

    Wel, Joe, I am sorry you are going through this finding extra tumor.

    I cannot offer you any comparisons, but would you want to consider a 2nd opinion?

    At least they found it and its small.

    Keep  us informed as to how you are doing, k?

    Hugs, Jan

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Argh!

    JoeMoose,

    Here's hoping its a cyst and not connected to the original tumor... If it's the same kidney though that seems weird that they didn't see it initially.  I suppose it is possible that you would have to occurrences of cancer in the kidney that aren't connected?  

    I'm wondering what they would consider the staging on this one as it is still in the kidney.  At least it is still small and therefore manageable.  Try to stay positive... this is why we get scanned regularly; to find these things early.  It is always better when found early.

    - Jay

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    Argh!

    JoeMoose,

    Here's hoping its a cyst and not connected to the original tumor... If it's the same kidney though that seems weird that they didn't see it initially.  I suppose it is possible that you would have to occurrences of cancer in the kidney that aren't connected?  

    I'm wondering what they would consider the staging on this one as it is still in the kidney.  At least it is still small and therefore manageable.  Try to stay positive... this is why we get scanned regularly; to find these things early.  It is always better when found early.

    - Jay

    Hi Joe,
    I agree with Andi and

    Hi Joe,

    I agree with Andi and Jay....it could well be cysts. Although it is probably a little distressing knowing that it is there, try not to worry too much. At least they are keeping an eye on it.

    Hugs

    Jojo

  • JoeMoose
    JoeMoose Member Posts: 19
    Small Renal Mass Recurrence

    Sorry guys. I wish it was a cyst. The Dr. told me it is solid and he is pretty sure it is another mass. I should have mentioned that part... Initially I was trying to go down that path as well. But unfortunately it is not the case. Any thoughts??? And thanks again for responding to me. 

  • APny
    APny Member Posts: 1,995 Member
    JoeMoose said:

    Small Renal Mass Recurrence

    Sorry guys. I wish it was a cyst. The Dr. told me it is solid and he is pretty sure it is another mass. I should have mentioned that part... Initially I was trying to go down that path as well. But unfortunately it is not the case. Any thoughts??? And thanks again for responding to me. 

    That sucks, Joe, I'm so

    That sucks, Joe, I'm so sorry. But please get a second opinion. It is pretty unusual to have two unrelated masses in one kidney. Have someone else interpret your scans; it can't hurt.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    A couple comments.  Typing on

    A couple comments.  Typing on phone.  

    First, sorry you have this new finding to be concerned about.  If i were you, i would get copies of my scans, always!  Also, get a pathology report copy.  Always check these things yourself.  

    Im wondering if you have any family history, because you are young.

    Also, your first scan was at 6 months, and the second was 10 months?  I always thought standard interval is 3 months initially.  I could be wrong.  But i wouldnt want to wait another 10 months to do a recheck.

    And i agree that you should get a second opinion with an rcc expert.

  • Sheeple
    Sheeple Member Posts: 19
    a_oaklee said:

    A couple comments.  Typing on

    A couple comments.  Typing on phone.  

    First, sorry you have this new finding to be concerned about.  If i were you, i would get copies of my scans, always!  Also, get a pathology report copy.  Always check these things yourself.  

    Im wondering if you have any family history, because you are young.

    Also, your first scan was at 6 months, and the second was 10 months?  I always thought standard interval is 3 months initially.  I could be wrong.  But i wouldnt want to wait another 10 months to do a recheck.

    And i agree that you should get a second opinion with an rcc expert.

    It seems to me that it must

    It seems to me that it must be fairly common practice for different doctors to follow vastly different protocols. I had a small (2.4 cm, grade 2) tumor removed, and then had one follow up CT scan 3 months later just to create a reference image. No additional follow up after that at all. Its what my surgeon said was normal as it would be very unusual for any kind of recurrence in my case. And I'm content with that since I really couldn't afford any regular follow up, just to be most likely told that everything is ok.

  • APny
    APny Member Posts: 1,995 Member
    Sheeple said:

    It seems to me that it must

    It seems to me that it must be fairly common practice for different doctors to follow vastly different protocols. I had a small (2.4 cm, grade 2) tumor removed, and then had one follow up CT scan 3 months later just to create a reference image. No additional follow up after that at all. Its what my surgeon said was normal as it would be very unusual for any kind of recurrence in my case. And I'm content with that since I really couldn't afford any regular follow up, just to be most likely told that everything is ok.

    Please don't neglect follow up testing

    Sheeple, with all respect to your doctor, why have a reference image if there will be no further follow ups? I think you should have follow up ultrasound scans every six months if your insurance won’t pay for the much more expensive CT scans. And for stage1 US is perfectly acceptable. Having a small chance of recurrence is not the same as no chance, unfortunately, so I really don’t think you should take that chance. I was also stage1 and am getting US and chest x ray every six months. Please continue getting follow up scans. The best thing you could hear is that everything is OK.

  • Sheeple
    Sheeple Member Posts: 19
    APny said:

    Please don't neglect follow up testing

    Sheeple, with all respect to your doctor, why have a reference image if there will be no further follow ups? I think you should have follow up ultrasound scans every six months if your insurance won’t pay for the much more expensive CT scans. And for stage1 US is perfectly acceptable. Having a small chance of recurrence is not the same as no chance, unfortunately, so I really don’t think you should take that chance. I was also stage1 and am getting US and chest x ray every six months. Please continue getting follow up scans. The best thing you could hear is that everything is OK.

    The purpose of the reference

    The purpose of the reference image is so that if I happen to need an abdominal CT sometime in the future, the radiologist will have something to compare it to at that time. Yes, I am aware the chance isn't zero, but I'm also aware that I have a much better chance of getting seriously injured in a car wreck but that doesn't stop me from driving to work everyday. Life has risks, some greater than others. Don't sweat the small stuff I say, and for me the likelihood of a recurrence falls into that category.

  • APny
    APny Member Posts: 1,995 Member
    Sheeple said:

    The purpose of the reference

    The purpose of the reference image is so that if I happen to need an abdominal CT sometime in the future, the radiologist will have something to compare it to at that time. Yes, I am aware the chance isn't zero, but I'm also aware that I have a much better chance of getting seriously injured in a car wreck but that doesn't stop me from driving to work everyday. Life has risks, some greater than others. Don't sweat the small stuff I say, and for me the likelihood of a recurrence falls into that category.

    Okay, that's one way of

    Okay, that's one way of looking at it :)

  • NewDay
    NewDay Member Posts: 272
    APny said:

    Okay, that's one way of

    Okay, that's one way of looking at it :)

    NCCN followup guidelines

    Sheeple,

    My nephrectomy was done at a major teaching hospital.  My surgeon said that they follow NCCN guidelines which are followed by many doctors and hospitals.  I'm listing the NCCN guidlines for Stage I followup care.  My opinion is that I would get an opinion from an oncologist before making a final decision about followup.  Urologists are experts at removing kidneys, not experts with cancer.  My urologist didn't even order a chest CT before or after my nephrectomy which should have been an obvious necessity for a 9cm grate IV tumor that would have a high risk of recurrence (and it did).  Maybe the oncologist will concur with your surgeon, but below are the NCCN guidelines for Stage I:

    • History & Physical every 6 months for 2 years, then annually up to 5 years after nephrectomy
    • Comprehensive metabolic panel and other tests as indicated every 6 months for 2 years, then annually up to 5 years after nephrectomy
    •  Abdominal imaging:
    •     After Partial Nephrectomy:
    •         Baseline abdominal CT, MRI, or US within 3 – 12 months of surgery
    •         If the initial postoperative scan is negative, abdominal CT, MRI, or US may be considered annually for 3 years based on individual risk factors
    •     After Radical Nephrectomy:
    •         Patients should undergo abdominal CT, MRI, or US withing 3 – 12 months of surgery
    •         If the initial postoperative imaging is negative, abdominal imaging beyond 12 months may be performed at the discretion of the physician
    • Chest imaging:  Chest x-ray or CT annually for 3 years, then as clinically indicated
    •  Pelvic imaging as clinically indicated
    • CT or MRI of head or MRI of spine as clinically indicated
    • Bone scan as clinically indicated

     

     

  • JoeMoose
    JoeMoose Member Posts: 19
    Small Renal Mass Recurrence

    Thanks for the responses... Sheeple. I totally get the move on etc. But grabbing an MRI or CT is pretty simple and always worth it. I was told initially not to worry that the partial is essentially a cure. But I still was diligent wtih follow up. Now if you want to go every year or two. That is up to you. But zero follow up is somewhat risky... just my thoughts.

    As for me, I have scheduled an appointment with an oncologist to get his opinion on this situation. Fortunately I already had one with him previously to get his opinion last time. (yes with this I am extra careful and prefer to hear you are fine from an expert vs a psychologist that has personal problems and cannot beging to relate to this stuff- :)

    I am curious if any of you are doing surveillance for stage 1 with a small mass. Apparently it is going to be next to impossible to find and remove the mass this time he told me... Also, does anyone think cryo or ablation works well and your thoughts on it... thanks

     

     

  • JoeMoose
    JoeMoose Member Posts: 19
    a_oaklee said:

    A couple comments.  Typing on

    A couple comments.  Typing on phone.  

    First, sorry you have this new finding to be concerned about.  If i were you, i would get copies of my scans, always!  Also, get a pathology report copy.  Always check these things yourself.  

    Im wondering if you have any family history, because you are young.

    Also, your first scan was at 6 months, and the second was 10 months?  I always thought standard interval is 3 months initially.  I could be wrong.  But i wouldnt want to wait another 10 months to do a recheck.

    And i agree that you should get a second opinion with an rcc expert.

    A couple comments. Typing on

    My first scan was 6 months and my second scan was at 15 months. (or 9 months later) Do you think I should get a scan at 3 months or 6 months? He is recommending 9 months at this point.... but again. I am going to request 3 months...

    I do not have family history - but I am going to get a genetic test completed. I just dropped my blood off yesterday for this. (Insurance turned it down the first time around- I wish I would have just went ahead with it anyway)

    How do you check scans out by yourself? I have the surgical report. Is there a separate report for pathology? Are there specific questions I should ask my oncologist at this point?

     

     

     

  • Sheeple
    Sheeple Member Posts: 19
    JoeMoose said:

    Small Renal Mass Recurrence

    Thanks for the responses... Sheeple. I totally get the move on etc. But grabbing an MRI or CT is pretty simple and always worth it. I was told initially not to worry that the partial is essentially a cure. But I still was diligent wtih follow up. Now if you want to go every year or two. That is up to you. But zero follow up is somewhat risky... just my thoughts.

    As for me, I have scheduled an appointment with an oncologist to get his opinion on this situation. Fortunately I already had one with him previously to get his opinion last time. (yes with this I am extra careful and prefer to hear you are fine from an expert vs a psychologist that has personal problems and cannot beging to relate to this stuff- :)

    I am curious if any of you are doing surveillance for stage 1 with a small mass. Apparently it is going to be next to impossible to find and remove the mass this time he told me... Also, does anyone think cryo or ablation works well and your thoughts on it... thanks

     

     

    I did have 2 appointments

    I did have 2 appointments with an ocologist, but all he did the first time was speak to me for about 30 seconds and schedule a following appointment for 6 months later. At that second appointment I told him what my surgeon had told me about me not needing any kind of follow up and he basically agreed. And so, none was scheduled. At this point I'm not even certain how I could go about getting a basic chest x-ray or CT since I no longer have an oncologist and I seriously doubt I could get a referral to one at this point as there is no clinical indication that I need it.

  • APny
    APny Member Posts: 1,995 Member
    Sheeple said:

    I did have 2 appointments

    I did have 2 appointments with an ocologist, but all he did the first time was speak to me for about 30 seconds and schedule a following appointment for 6 months later. At that second appointment I told him what my surgeon had told me about me not needing any kind of follow up and he basically agreed. And so, none was scheduled. At this point I'm not even certain how I could go about getting a basic chest x-ray or CT since I no longer have an oncologist and I seriously doubt I could get a referral to one at this point as there is no clinical indication that I need it.

    Joe, as I said, we’re

    Joe, as I said, we’re monitoring two small lesions, one on each kidney. But they believe them to be simple cysts so it’s a bit different from yours being solid. If yours hasn’t grown any perhaps surveillance is the best approach, especially how it’s located in the middle of your kidney. I would however want a second opinion. Is the oncologist you’re going to see the same one who recommended the wait and see approach or a different one? I was advised against cryoablation, saying it’s mostly for those for whom surgery is high risk. You can’t do pathology on ablated tumors as they’re destroyed so that’s another concern. Again, something to discuss with your oncologist.

    Sheeple, you could approach your surgeon and/or urologist and ask that they schedule an x-ray and an US. US is much cheaper than a CT and as I said, perfectly acceptable protocol for stage 1. That’s what Sloan Kettering is doing with me. Six month US and chest x-ray and I’m happy with it. So do see your surgeon/urologist and get it scheduled. I don’t think zero follow up is a good idea, at least for the first three years.

  • JoeMoose
    JoeMoose Member Posts: 19
    Small Renal Mass Recurrence

    Good news!!! Bad news... I prefer to look at it like it is good news. My newly detected mass was actually on my scans going back to June 2014 (prior to the removal of my 1.7 cm mass). So basically it has not grown in 15 months... sad part is that they would have probably taken it out if they saw it. In the end, i am happy.... just doing surveillance (I do not have much of a choice at this stage) - not worth the risk with the size. Plus they would have trouble finding it during surgery and/or removing it. Take care all. Thanks

  • APny
    APny Member Posts: 1,995 Member
    JoeMoose said:

    Small Renal Mass Recurrence

    Good news!!! Bad news... I prefer to look at it like it is good news. My newly detected mass was actually on my scans going back to June 2014 (prior to the removal of my 1.7 cm mass). So basically it has not grown in 15 months... sad part is that they would have probably taken it out if they saw it. In the end, i am happy.... just doing surveillance (I do not have much of a choice at this stage) - not worth the risk with the size. Plus they would have trouble finding it during surgery and/or removing it. Take care all. Thanks

    I take it as good news too.

    I take it as good news too. If it has not grown at all in a year and a half chances are it's nothing urgent. Just keep monitoring it like they do with mine.