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Frequency of scans for RCC under surveillance

Posted by azkidney57 @azkidney57, Jan 4, 2020

7 months ago I had a right nephrectomy for RCC. I am stage 3 grade 2 no Mets. A RCC oncologist in another city recommended MRI abd/ pelvis and chest CT every 3 months. My oncologist in the city where I live recommends scans every 4 months. I ask why can’t I have scans every 6 months? My tumor was mostly grade 1 with less than 5 % grade 2. I was told my tumor took a long time to form. Wouldn’t Mets take time to form? The body kills off cancer cells why can’t I count on my immune system to kill off Mets? All the oncologists I have seen, there were four of them, tell me I have a higher chance of cancer recurrence because of my tumor size and because the tumor was in the Renal vein and surrounding renal fat. My adrenal gland and lymph nodes were negative. My October 2019 scans were clear no evidence of cancer. My surgeon told me the tumor was all in the lower pole of my kidney and he saw no evidence of Mets. I was told by the oncologist micromets are the issue. I want to do want is best for me without subjecting myself to excessive scans.

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Ginger, Volunteer Mentor | @gingerw | Jan 5, 2020

@azkidney57 Ask your nephrologist and oncologist what their recommendations are, and the underlying reasons. While I am also not a fan of numerous scans, I do know the value of keeping to the schedule. I would rather know, and be aware of potential issues, than forego something and find out there are new problems to address. What holds you back for scans?
Ginger

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azkidney57 | @azkidney57 | Jan 5, 2020

Ginger, the specialist at the Mayo Clinic said 3 months for scans. The oncologist I see in my city told me scans every 4 months because he doesn’t want it “fry” me. I didn’t appreciate his remark, I think it was an attempt at humor. I ask why not scans every 6 months? No one knows when or where the cancer may or may not strike. I will have the scans. I just dread it. The surveillance game is just another difficult aspect of life as a cancer patient. The scans and blood work and appointments with physicians all part of the “package”. It’s getting old quick and I just started. I don’t see a nephrologist. I was told I don’t need one. I have the urologic surgeon, the oncologist, my PCP, my new doctor a psychiatrist, lastly I will keep the RCC oncologist from Mayo as my go to person. I am seriously thinking of moving to the city where this doctor lives. It’s a 2 hour drive from me. Thanks for checking on me Ginger.

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1 reply
JK | @contentandwell | Jan 5, 2020
In reply to @azkidney57 "Ginger, the specialist at the Mayo Clinic said 3 months for scans. The oncologist I see..." + (show)
@azkidney57

Ginger, the specialist at the Mayo Clinic said 3 months for scans. The oncologist I see in my city told me scans every 4 months because he doesn’t want it “fry” me. I didn’t appreciate his remark, I think it was an attempt at humor. I ask why not scans every 6 months? No one knows when or where the cancer may or may not strike. I will have the scans. I just dread it. The surveillance game is just another difficult aspect of life as a cancer patient. The scans and blood work and appointments with physicians all part of the “package”. It’s getting old quick and I just started. I don’t see a nephrologist. I was told I don’t need one. I have the urologic surgeon, the oncologist, my PCP, my new doctor a psychiatrist, lastly I will keep the RCC oncologist from Mayo as my go to person. I am seriously thinking of moving to the city where this doctor lives. It’s a 2 hour drive from me. Thanks for checking on me Ginger.

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@azkidney57 It really is wearying to have to do something like have scans so regularly. I understand your dreading it but if it is being recommended the doctor must feel that it is the best way to be certain that nothing progresses too far. If you have confidence in the doctor you really have to abide by their recommendations.
I am similar to you in thinking I want to be closer to my medical care. I am in southern NH, an hour north of Boston, but during the day it can take two hours to get there, occasionally even longer. I would like to move back to MA but my husband is opposed. If I was alone I would definitely do that.
JK

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