Benign Kidney Tumors (oncocytomas or angiomyolipomas)

[oncowoman]

I was originally told I had kidney cancer. But after having surgery it was determined that the 5 tumors in my kidney were benign oncocytomas. Wondering if anyone else was first told they had kidney cancer and then told they had a benign tumor?

[MICHIGANDAVID]

Welcome to the group. How did blood work look when they first told you?

[oncowoman in reply to MICHIGANDAVID]

All of my tests were completely normal. No symptoms. Just the 3 tumors in my left kidney which later turned to 5 tumors when they found 2 more. All the scans seemed to indicate that these tumors were cancerous. But maybe the normal lab tests were a sign that this wasn't cancer. But I think many patients with cancer have good labs initially at least.

[MICHIGANDAVID in reply to oncowoman]

A lot of my wife’s numbers were not good. She needed a blood transfusion.

[oncowoman in reply to MICHIGANDAVID]

I always wonder if they should have been on the lookout for a benign diagnosis especially since both of my aunts have oncocytomas.

[MICHIGANDAVID in reply to oncowoman]

My wife had 2 tumors. 1 encased the left kidney and other tumor was in abdomen, could have been ovarian cancer. Due to her grandmother had it. When the tested it after removal it was not cancer. Just kidney cancer. Wife could have had ovarian and kidney cancer at same time. Luckily it was just kidney cancer only...

[oncowoman in reply to MICHIGANDAVID]

I hope she is doing well now. What a scary journey you have been on.

[MICHIGANDAVID in reply to oncowoman]

Thank you. She is the pride and joy of her oncology team...

[greg1976 in reply to MICHIGANDAVID]

My labs were totally within normal range and no indications of Cancer. The scan showed a large tumor on my right kidney. Had I not had blood in my urine ONCE and was never repeated, I would not have known I had Kidney Cancer. I am glad they found it. Blood work is an indicator of opportunities for further exploration.

[Hampner in reply to greg1976]

That's why they recommend that you go to a RCC specialist. It is a tricky disease. And since if it gets out of the kidnyit is a death sentence. You have to stay on top of it. I'm 4 years into my journey. I had left kidney removed because of tumor 19 cm. Size of softball. But it had already spread to my lungs. So I e been on 2 different chemotherapy and 1 immunotherapy. The immunotherapy was the worst. It attacked my lungs and my lungs were extremely swollen. I'm still fighting the effects of Opdivo.

[Hampner]

I'm very happy for you. I have stage 4 kidney cancer. It is no fun and a definite death sentence

[arodgers59 in reply to Hampner]

I know that when we here stage 4, we all think that it is a death sentence. The thing is in this life, 10 out of 10 of us are going to die at some time. I've been stage 4 since 2011. I pray that all of you can find some hope in your life.

[Dbattle]

Yes - it happens more frequently than you think. They can't really tell from scans whether it's oncocytoma or RCC - but regardless of the diagnosis, the course of action is usually to remove the mass, so I think unfortunately surgeons just tell patients that it's kidney cancer so they'll be prepared for the diagnosis (which isn't a great way to do things!). Johns Hopkins is working on new scanning technology that will hopefully be able to differentiate better in the future. There is a group for oncocytoma patients on facebook if you're interested.

[MICHIGANDAVID in reply to Dbattle]

Thank-you for your input on this.

[arodgers59 in reply to Dbattle]

Hi. Is this Dena Battle from KCCure? If so, thank you for joining this group. I just joined a few days ago. I am also in the kidney cancer group on Facebook and see your posts very often.