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icemantoo said:

No one right or wrong answer

Percy,

 

 

First the good news. Your tumor is small and most of the follow up is CYA. Typically they scan at 3 months and yearly after that for 6 years. After 5 years they scan with ultrasounds as too many CT's can cause problems. A Chest CT will pick up nodules (,amy of which are harmless) that a chest xray doesm't show. If you have the ability to get an Onc referralgo  for it, but probably not necessary.. You should be fine for the long term.

 

 

 

 

icemantoo

Iceman,

Thanks much for the positive vibes. Everything I’ve read so far has been fairly encouraging too wrt disease free progression on a long term basis. Hopefully I have seen the last of it and continue living a normal life.  I‘m definitely going to try consulting an oncologist even if it’s a low risk tumor - can’t put a price on peace of mind. Your personal journey gives people like me plenty of hope. 

a_oaklee said:

Hi Percy.  I dont think you

Hi Percy.  I dont think you have anything to be too concerned about right now.  The only red flag to me is how incredibly young you are.  If I were you I would see a urological oncologist....at least once.  Why not?  More is better.  The surgeon is not an oncologist.  And while it is true that you no longer have cancer. It would still be very good for you to have that consultation for their advice.  That's where the experience is.  Best wishes.

Hi Oaklee

i m definitely going to seek a consult with an oncologist experienced in treating RCC. It might very well be a one off thing but I think it’s very much worth to contain my levels of anxiety. I did ask my urologist about my age versus the diagnosis. His reply was - bad luck my friend. I have screened a few threads in this board and seen people my age, some marginally older and others much younger being diagnosed with RCC. None of immediate family members (those still alive and the ones passed away) have had cancer and I m hoping no one gets it moving forward. There are always outliers like in every aspect of life and I fell on the wrong side of the curve. Counting my good luck it was caught early and hoping this pretty much is the end of it all. 

I hope your recovery is coming along great.

a_oaklee said:

Sounds to me like you have an

Sounds to me like you have an excellent plan, and good insight.  I'm glad you have no family history of RCC.  I'm thinking that if you are at a major medical center in STL that you will have no trouble having an oncologist see you.  I think baseline scans for your chest and pelvis plus abdomen would be great the next time you get scanned.  I can also predict that due to your age and your wonderful prognosis that you arent going to want to have more contrast or radiation than necessary.   Now you have to work on living your life without anxiety.  Theres help for that too.

For the record, I'm here for my husband.  Diagnosed at a healthy 65, at an immediate Stage 4 Grade 3, 4 cm tumor.  It's been over 7 years now, and he is really doing well.  His scans have finally gone to annual.  For awhile there it was every 2 months, but we creeped forward to longer time intervals.

What I've learned:  dont read anything older than 5 years on the internet.  Keep copies of your own reports and read them yourself.  Find a way to free your mind.  Have a really great primary care provider.  

Thanks for those valuable suggestions. I read (still do) mostly research articles from leading treatment centers and have realized even their studies can be mostly statistical analysis of earlier case studies. This is where I find this forum extremely valuable - we all offer real time research data and its current.

I‘m happy to hear that your husband is doing really well since the initial diagnosis and may he continue to ge better. If I may ask, how did his 4 cm (conventional T1a) got classified stage 4? I‘m trying to see if there is a lesson for someone like me based on his diagnosis.

a_oaklee said:

It's interesting to me that

It's interesting to me that my husbands initial treatment medications, are no longer the drugs of first choice in the US.  Treatment options are rapidly improving.  That is why I made the comment about not reading anything older than 5 years.

I'm sure you've heard the expression, location, location, location.  Usually referring to real estate.  It applies to RCC too.  My husbands tumor was centrally located in the kidney where the blood vessels are prominent.  So even though his tumor was small, it had already metastasized.  It was in his bones at various locations throughout his body, and also one  lymph node.   Prior to being diagnosed, he had back pain for a couple months.  We thought it was from lifting something, like a pulled muscle or nerve being pinched.  The good news is that he doesnt have any active disease since 2013.  

You are in a very good place, and I honestly think you are going to be okay.  Just do your scans and insist on what you think is right for you.  

 

There is so much I learn about this disease each and every day. While it's extremely unfortuntae for a 4 cm tumor to metastasize, I'm happy to hear that te recovery process has been coming along great so far. I think location played (somewhat) helped me in an unexpected way - Per my surgeon he was able to save almost 99% of my kidney (have my lingering doubts) cos of the tumors location. I got some blood work done last week and my serum creatinie was even better than it was before the surgery. 

I do have access to a really world class cancer care and research center in Washnington University/Barnes Jewish and consider my self extremely fortunate despite the diagnosis.