New to Forum

Jojo61 said:

Welcome rja3d. When you are

Welcome rja3d. When you are ready, we are here to support you!

Hugs

Jojo

rja3d,

Rea your bio. You seem to be taking the initiation quite good. Put some of that info on this post. We are all experts here as far as being nephed is concerned. Nobody volunteered.

Icemantoo

hardo718 said:

Welcome rja3d

What a way to meet new people huh?  We all have the same in common here, different variations, but nevertheless a common thread.  And we all experience the fears and anxiety that come along with the diagnosis, so don't be afraid to chime in when you feel the need.

You are well into your recovery at this point, hope you're doing well. 

Blessings,

Donna~

Welcome,

You will find this is the absolute best place to get support and information.  I feel so much better knowing people here understand what nobody else around me does.

Again welcome )

Sorry you have to be here, but glad to meet you.

I read your bio. A bit surprised you ended up with Stage 3 with a 4 cm tumor. Did it infiltrate some blood vessels?

The protocol you are being followed with sounds like the absolute minimum. I'm going to guess you are being followed by your surgeon? Being Stage 3, you are at a higher risk for recurrence. You *might* want to see a medical oncologist that specializes in RCC for followup. My guess is that an RCC specialist may do some more screening tests to make sure you're cancer free and may follow you a little more closely. I was also Stage 3 3 years ago. My medical oncologist is a national expert on RCC. I had a nuclear bone scan after my surgery to rule out bone mets and then my followup was a CT of chest/abdomen and pelvis every 4 months the first year, every 6 months the second year and third year, then would have been annually thereafter.

I had a recurrence in my adrenal gland after 2 years, so I'm glad I've been followed closely.

My surgeon was not going to follow me that closely. I think it's because he "got it all" and considered me "cured". I also think he just wasn't as well schooled on the recurrence risks and patterns as the medical oncologist was.

Welcome and wish you well.

Todd

rja3d said:

on a lighter note     any

on a lighter note     any advice on how to get my profile picture right side up?   drives me nuts not to have it right for some reason.   really appreciate this forum and the opportunity to converse with everyone.  Thanks

Welcome and wishing you the very best. Did you take that photo with your cell phone? If yes, rotate the one you uploaded to your computer so it's in the right position, then save and upload that version to CSN. Hope it works

rja3d,

Welcome to the board!  As Icemantoo always said, no one wants to join it but once you do it makes you feel better knowing that you have a place where you can talk freely about your struggles.  It sounds like, considering the size of your tumor, that we were lucky ones and it was caught fairly early.  One thing I'm always thankful for is this forum because when I try to talk about cancer these days it just seems to make people uncomfortable.  Everyone else wants to move on, but it's not something we can just pack up and send to Fiji, is it?  We'll think about it forever.

That being said, I have to echo what Todd said above... Many surgeons want to mark you "CURED" and move on to other cases.  They will follow you sparingly because they have better things to do... like operating on people.  But you were classified as Stage 3.  That makes it a slightly different ball game.  I was Stage 1, and even I get scans every 6 months for TWO years, not just one.  I'm due for my 18-month scans next Wednesday.  

There a website, www.nccn.org, that has clinical guidelines for follow-up scans dependent on staging.  You can sign up to read the articles as a patient.  Some of them are pretty tough reads, very clinical, but it's a good resource.  They are the recommended guidelines for the follow-up scans of cancer patients.  I logged in and it looks like they recommend follow-up scans every 3-6 months for 3 years for Stage 3 patients.  So I would definitely question the motives of your current doctor.  It sounds like he is not following the minimal guidelines (there's no "law" that they have to, I just find it ridiculous when they don't).  

Remember, NO ONE ON EARTH (except maybe a wife or spouse) will ever be a bigger advocate for your treatment than you.  Ask lots of questions and don't settle until you are comfortable with the treatment plan.  I'm not saying all this to scare you into thinking bad things will happen; it is just that scans are our lifeline into attacking any future problems that MAY come up.  And it's important that you make sure they happen on a schedule you are comfortable with.

Good luck, and let us know if you have any more questions!

- Jay 

rja3d said:

on a lighter note     any

on a lighter note     any advice on how to get my profile picture right side up?   drives me nuts not to have it right for some reason.   really appreciate this forum and the opportunity to converse with everyone.  Thanks

So I guess you got it fixed? It looks good to me.

Todd