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Trust Doctor or Get a Second Opinion about Kidney Cancer?

Posted by beyondscared @beyondscared, May 31, 2025

Hello, this is my first time posting and I must admit, I am terrified. I was diagnosed with a 5cm Low Grade RCC about 1.5 years ago (yes, it has taken this long) and has been held up time after time due to kidney stones needing to be treated first in the other kidney. I am finally scheduled for surgery on June 18, I am unsure if it will be partial or radical as the CT scan show my tumor might be invading the renal pelvis and if so, my doctor says it would need to be a radical surgery and remove the entire left kidney.
The main issue I am having is in 2018 I had my very first chest CT scan ever and multiple lung nodules were found back then. After my kidney cancer diagnosis in 2023 another CT scan of my chest was done in March of 2025 and the lung nodules were unchanged and all still the exact same as they were in 2018. In the last year, I have lost almost 150 pounds, mind you by diet and exercise. In March of 2025 I had another chest CT scan just before kidney stone surgery and 4 new lung nodules have been seen, the largest being 3mm. My doctor has told me that he believes my kidney cancer is Stage 1 unless it as spread and when I asked him about the new lung nodules he seemed to pretty much blow it off and say he did not think they are related? To me it raised so many red flags and I am not sure if I should follow through with this surgery on the 18th and get a second opinion? I am lost. Too me is seems like common sense that these could be spread but he somehow thinks there is not much of a possibility that this is the case,

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

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cindyc | @cindysummit | Jan 31 2:48pm

Hi,

I have been watching and listening to the Mayo Clinic Patient Education Symposisium all day. It has been amazing...so much good stuff. Thank you all. Gave me hope for my tough week. Read on, please.

I am in remission for CHrcc for 3 years and on Monday I had my annual MRI scan. My results came back and read: .."what is likely an 8.5 mm in size cyst at the level of the lower pole laterally as measured. This is mildly larger than in previous studies." Actually, it is quite larger...the MRI from the previous January in 2025 revealed a "subcentimeter cyst at the level of the lower pole of the right kidney."

I wrote to my doctor via the patient portal (Urologist for cancer) and expressed my concern as my appt with him is not until April. His reply was short and impersonal reading "Overall, not concerned with cyst. See you in April."

I was disappointed in not hearing a bit more about this latest and larger cyst. I spoke to a few people (not Dr. Google!) and they felt the growth was more than "mildly significant" as radiologist noted in report.

Any thoughts?

Thanks.

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mapleskoff | @mapleskoff | Feb 1 9:09am
In reply to @cindysummit "Hi, I have been watching and listening to the Mayo Clinic Patient Education Symposisium all day...." + (show)
Profile picture for cindyc @cindysummit

Hi,

I have been watching and listening to the Mayo Clinic Patient Education Symposisium all day. It has been amazing...so much good stuff. Thank you all. Gave me hope for my tough week. Read on, please.

I am in remission for CHrcc for 3 years and on Monday I had my annual MRI scan. My results came back and read: .."what is likely an 8.5 mm in size cyst at the level of the lower pole laterally as measured. This is mildly larger than in previous studies." Actually, it is quite larger...the MRI from the previous January in 2025 revealed a "subcentimeter cyst at the level of the lower pole of the right kidney."

I wrote to my doctor via the patient portal (Urologist for cancer) and expressed my concern as my appt with him is not until April. His reply was short and impersonal reading "Overall, not concerned with cyst. See you in April."

I was disappointed in not hearing a bit more about this latest and larger cyst. I spoke to a few people (not Dr. Google!) and they felt the growth was more than "mildly significant" as radiologist noted in report.

Any thoughts?

Thanks.

Jump to this post

@cindysummit Perhaps you might: Get an earlier sit-down with your doctor, or get a second opinion form another Urologic oncologist. I would let your doc know that you are more than a bit anxious about the radiology result, and need to talk about it in greater length.
Perhaps your doc has a nurse practitioner in his/her office that will speak with you.
If you are near a university medical center that may be an option, or the Mayo Clinic. I know, it is all dependent on insurance.
I wish you the best.

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cindyc | @cindysummit | Feb 1 10:46am
In reply to @mapleskoff "@cindysummit Perhaps you might: Get an earlier sit-down with your doctor, or get a second opinion..." + (show)
Profile picture for mapleskoff @mapleskoff

@cindysummit Perhaps you might: Get an earlier sit-down with your doctor, or get a second opinion form another Urologic oncologist. I would let your doc know that you are more than a bit anxious about the radiology result, and need to talk about it in greater length.
Perhaps your doc has a nurse practitioner in his/her office that will speak with you.
If you are near a university medical center that may be an option, or the Mayo Clinic. I know, it is all dependent on insurance.
I wish you the best.

Jump to this post

@mapleskoff

Thank you. He absolutely will not see me before or on 4/8. ..only on e each year.

I think I do want to talk with someone. Both of my patents' had cancer and although I am in remission, I had CHrcc.

I have had two other cysts in my life as well..a large benign ovarian cyst as a kid and a large teratoma in 2022. I am just a little nervous...my do tor, not so.

Thank you for responding. Appreciate that.

Cindy C

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