New to Forum

rja3d

Just a quick good morning to everyone.  New to all of this and looking forward to learning and contributing.   

 

Jojo61

Welcome rja3d. When you are

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

Hugs

Jojo

icemantoo

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

icemantoo said:

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

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~

daisybud

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~

Rja3d

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 )

 

lcsvb

Looks like we joined the club the same time!

Glad to hear you are on the healed side now too! I am almost 8 weeks out from my partial and feeling much more normal now as I hope you are as well.

todd121

Hi and 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

todd121 said:

Hi and 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

Thanks todd121.  Yes, it did

Thanks todd121.  Yes, it did infiltrate somewhat which is why he said it was classified as 3.  I go to a urologist who did the surgery.   I'll know more after my first round of tests in May.   appreciate the info and the encouragement!   best wishes to you and good health!

rja3d

lcsvb said:

Looks like we joined the club the same time!

Glad to hear you are on the healed side now too! I am almost 8 weeks out from my partial and feeling much more normal now as I hope you are as well.

seems to be getting better

seems to be getting better each day.  just trying to work out the sore/stiffness at this point, and glad to be sleeping more normal finally.    Glad you are doing well too.  

rja3d

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

rja3d

icemantoo said:

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

I'll definitely do that.  

I'll definitely do that.    I'm still trying to compose my thoughts on all this and really welcome being able to hear from others.   thanks again

rja3d

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~

yes it is.   My family's been

yes it is.   My family's been great, but I'm not sure they want to talk about this as much as i need to, so this forum is really going to serve an important purpose for me.  

 

APny

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

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

Jan4you

APny said:

Welcome and wishing you the

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

< ========== Me waving a warm

< ========== Me waving a warm HELLO to you!!

Glad you are over your surgery and found us!

Jan

rja3d

APny said:

Welcome and wishing you the

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

Thank you!  

Thank you!  

rja3d

Jan4you said:

< ========== Me waving a warm

< ========== Me waving a warm HELLO to you!!

Glad you are over your surgery and found us!

Jan

Thank you Jan.  Best wishes

Thank you Jan.  Best wishes to you. 

jason.2835

2nd Opinion?

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

jason.2835 said:

2nd Opinion?

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 

Thank you so much Jay!  Gives

Thank you so much Jay!  Gives me some good questions to ask the doc.  Will checkout the link as well. 

 

todd121

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

It is right side up. Now.

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

Todd

rja3d

todd121 said:

It is right side up. Now.

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

Todd

Yes!

included my wife in the picture, better than just showing my old mug!  Hope you have a good day 

Jay

rja3d

jason.2835 said:

2nd Opinion?

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 

Thanks for the Link: www.nccn.org

These guidelines have really been helpful.  wish i had read them before surgery, but now I'm much better prepared for my appoinment 12 May.   

Thanks again

Jay