RCC just diagnosed

Posted by JadeUnicorn26 @maryellen26, Jan 2 6:52pm

I was just diagnosed yesterday with RCC. I'm devastated. My head is spinning. I'm waiting for my Dr to give me referrals to kidney RCC specialist so I can find out what my options are.
I've been looking at surgery to remove my whole kidney, surgery to remove just the tumor , cold ablation and heat ablation, laparoscopic surgery etc .

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

I can appreciate what you are going through. Having had kidney disease for years, I too was devastated when told I had kidney cancer, which was discovered incidentally to another problem. My only comment would be to see an appropriate Oncologist, and one at a teaching facility if possible, and hear what you are told with respect to options. My understanding is that kidney cancers are slow growing, so as scared as you may be, you need time to make an informed decision. I'm now 84, and still have the bad kidney, and was diagnosed a year and a half ago. Please, take your time, and have aa trusted person with you when you see the oncologist. Make a list of your questions so that you are an informed patient. I wish you good luck, a great Oncologist, and peace.

REPLY
Profile picture for mapleskoff @mapleskoff

I can appreciate what you are going through. Having had kidney disease for years, I too was devastated when told I had kidney cancer, which was discovered incidentally to another problem. My only comment would be to see an appropriate Oncologist, and one at a teaching facility if possible, and hear what you are told with respect to options. My understanding is that kidney cancers are slow growing, so as scared as you may be, you need time to make an informed decision. I'm now 84, and still have the bad kidney, and was diagnosed a year and a half ago. Please, take your time, and have aa trusted person with you when you see the oncologist. Make a list of your questions so that you are an informed patient. I wish you good luck, a great Oncologist, and peace.

Jump to this post

@mapleskoff thank you for your kind words.
I unfortunately have no one to help me with this diagnosis.its just me . I plan on writing every question down to bring with me when I see the Dr. Im in Virginia, a few hours from Virginia Tech university and close to major hospitals.
Im hoping this was caught early too. I had a UTI then a kidney stone and kept telling my Dr something still wasn't right and kept demanding a CT scan and ultrasound. She finally gave in and sent me for both tests and that's when it was found on Wednesday..
I hate when Drs don't believe patients when they say something is wrong . We know our bodies better then them.

REPLY

I know the feeling having been diagnosed with a malignant lesion on left kidney March of 2023. Urologist said that the only option was total nephrectomy followed by other treatments. Because of my age - - 81 at the time - - I opted out after considering all things. I was referred to oncologist who put me on Keytruda 21 months ago with 19 infusions to date. Last CT scan a few months ago showed to spread of cancer, and the lesion was no longer visible. I have had side effects which I will not go into, but with my appointment this Monday I am considering stopping since a more serious side effect has come up. But for the past couple of years I have been able to live an ordinary everyday life taking part in normal activities including driving. I know this is a difficult and personal decision that only you can make after carefully researching with you medical team all of your options. I wish you well.

REPLY
Profile picture for JadeUnicorn26 @maryellen26

@mapleskoff thank you for your kind words.
I unfortunately have no one to help me with this diagnosis.its just me . I plan on writing every question down to bring with me when I see the Dr. Im in Virginia, a few hours from Virginia Tech university and close to major hospitals.
Im hoping this was caught early too. I had a UTI then a kidney stone and kept telling my Dr something still wasn't right and kept demanding a CT scan and ultrasound. She finally gave in and sent me for both tests and that's when it was found on Wednesday..
I hate when Drs don't believe patients when they say something is wrong . We know our bodies better then them.

Jump to this post

@maryellen26
I agree with your last two sentences. I consider myself lucky to have been connected with super Oncologists. I can only suggest that you forcefully request being referred to a top notch doctor. Failing that, and if your insurance, time, and funds allow, refer yourself to said doctor. It is your well being, after all. You sound like a very good advocate for your care. Hoping you get the result you want.

REPLY
Profile picture for ronsale @ronsale

I know the feeling having been diagnosed with a malignant lesion on left kidney March of 2023. Urologist said that the only option was total nephrectomy followed by other treatments. Because of my age - - 81 at the time - - I opted out after considering all things. I was referred to oncologist who put me on Keytruda 21 months ago with 19 infusions to date. Last CT scan a few months ago showed to spread of cancer, and the lesion was no longer visible. I have had side effects which I will not go into, but with my appointment this Monday I am considering stopping since a more serious side effect has come up. But for the past couple of years I have been able to live an ordinary everyday life taking part in normal activities including driving. I know this is a difficult and personal decision that only you can make after carefully researching with you medical team all of your options. I wish you well.

Jump to this post

@ronsale thank you for your kind words as ❤️‍🩹
I am 61 and hoping to get answers so I can make the right decision.

REPLY

A normal kidney weighs about 1/3 pound. Mine weighed just shy of 4 pounds! Years of meloxicam (prescribed by the VA) and Aleve damaged my remaining kidney and I’m at Stage 3b. Changed to a renal diet and had one keytruda infusion with severe debilitating side effects controlled (thus far) with hydroxychloroquine and a low dose of prednisone.
An upcoming blood test should tell the tale.
Get all the information you can, ask questions, and as my primary doctor said, Pray!

REPLY
Please sign in or register to post a reply.