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Trust Doctor or Not about Kidney Cancer
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,
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beyondscared, I understand your fears as I've been there, and am still there in fact. I'm recently diagnosed with kidney cancer and will be having surgery in mid June to remove my left kidney. My cancer was diagnosed as High Grade so it grows kind of fast and has a tendency to come back down the road.
I also have nodules in my lungs. I've had them a long time and mine do what they call Waxing and Waning. So what happens is some new ones show up, some old ones go away, some nodules get bigger and some get smaller. I don't know how long I've had them before they were accidentally discovered in a scan of my abdomen. I get a yearly chest scan to monitor the nodules but my doctors don't expect any trouble from them. I was scared they were cancer but my doctors are sure they are not; they don't act nor grow like cancer.
It's never bad to get a second opinion but I feel like I can reassure you a little about the lung nodules. Mine have spread into both sides and all lobes, yet they stay small and while new ones always come, others go away. I have no symptoms from the nodules. My kidney surgery is also June 18th. I'll send you good wishes for a successful surgery before they put me under.
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3 ReactionsA second opinion is always a good idea. Where are you being treated? Are you being seen by an RCC (renal cell carcinoma) specialist? I highly recommend that you take some time to get a second opinion from an expert in kidney cancer treatment.
https://www.cancer.gov/research/infrastructure/cancer-centers/find
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2 ReactionsIf you trust your doctor fully and have faith in his advice and you have done your own research go with him; if you're not sure he has the answer seek a second opinion. My kidney cancer was diagnosed a little over two years ago and urologist advised total nephrectomy of kidney with malignant lesion. Because of my age, 81 at time of diagnosis, I ruled out surgery and have been on Keytruda for a little over a year and also had high dose radiation to stop bleeding from lesion about a year ago. Because of severe skin rash from immunotherapy, after 14 treatments I will probably stop treatment, which was a palliative in any case. These decisions are hard to make, but after a decision is made it is best not to dwell on your cancer but enjoy each day given to you.
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3 ReactionsI guess it is not so much having lung nodules that bothers me at this point. It is the fact that they remained unchanged from 2018-2024 and then in 2025, 4 new ones have appeared. That has raised the red flags with me, but it seems only me. My kids, who are RNs seem to think it was because of massive weight loss over the last year and the scans are now able to see more. However, I am still questioning it. I guess the good news is, my 5cm tumor has not grown at all in the 2 years since I was diagnosed. This was the result of my tumor biopsy:
A. KIDNEY, LEFT, MASS, CT GUIDED FINE NEEDLE ASPIRATION:
Rare malignant cells, consistent with clear cell renal cell carcinoma. See comment.
Diagnosis Comment
Aspirate smears are sparsely cellular, composed of rare, small, cohesive groups of cells with clear cytoplasm and round nuclei containing small, distinct nucleoli in a background of abundant blood. A cell block is prepared and examined to increase diagnostic yield and shows blood.The concurrent core biopsy (SU24-06898) is reviewed and shows malignant cells with a similar morphologic appearance. Immunohistochemistry performed on the biopsy is consistent with low grade renal cell carcinoma. Please see this report for additional information. Representative slides of this case were reviewed at the intradepartmental consultation conference.
Immunohistochemical study was performed on (A1) to characterize the tumor, and the immunoreactivity profile supports the diagnosis.
IMMUNOHISTOCHEMISTRY:
ANTIBODY(CLONE)(BLOCK):RESULT
CA IX (EP161, Cell Marque) (A1): Positive
CD117 (Ckit) (EP10, Leica) (A1): Positive
CK7 (RN7, Leica) (A1): Negative
PAX-8 (MRQ-50, Ventana) (A1): Negative
So we are having the same surgery on June 18. That is uncanny. Mine will be performed at the University of Vermont. What size is your tumor, if you do not mind me asking?
Great luck to you!
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1 ReactionHello,
I am being treated by Dr. Brian Irwin at The University of Vermont. He seems to be one of the best in the area.
Thank you. I am in my 50s. I find it hard every day to wake up and realize that yes, I still have cancer. To me, reality just is hard to take at times. I see so many people who look forward to this surgery and just say "get the cancer out of me". It has taken me almost two years to get this surgery and it is still just as terrifying now as it was 2 years ago.
Thank you for your reply. I wish you the best!
Mine is actually bladder cancer that is growing in my kidney pelvis. It looks like a cactus kind of. It has arms that branch out. It is 3cm by 12cm but they can be more sure once it's out. Only 7% of Urothelial Carcinoma happens in the kidney. Lucky me. lol
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1 ReactionThere was a question of whether or not I had the same type as you, Wildyard, which would have meant removal of the kidney, ureter and part of the bladder. That is the reason it was suggested I have a biopsy done to determine the type of tumor I was dealing with. It turned out to be Low Grade RCC in the end.
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2 ReactionsIt's always good to get another opinion......
This too shall pass.
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1 ReactionWell, removing this cancer has been coming a long time, since December 2023 when I was first diagnosed. IT has been out off due to many other circumstances and now a surgery to finally remove it is happening on June 18. I don't really have time to get a second opinion at this point. We do know, the cancer has to come out. If it be partial or radical, that is the only question left.
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