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rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

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

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

Hugs

Jojo

icemantoo's picture
icemantoo
Posts: 3284
Joined: Jan 2010

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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's picture
daisybud
Posts: 491
Joined: Jan 2016

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 :))

 

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

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.  

 

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

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

lcsvb's picture
lcsvb
Posts: 41
Joined: Jan 2016

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.

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

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.  

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

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's picture
rja3d
Posts: 35
Joined: Mar 2016

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's picture
rja3d
Posts: 35
Joined: Mar 2016

on a lighter note Laughing    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

APny's picture
APny
Posts: 1988
Joined: Mar 2014

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 Smile

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

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

Glad you are over your surgery and found us!

Jan

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

Thank you Jan.  Best wishes to you. 

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

Thank you!  

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

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

Todd

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

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

Jay

jason.2835
Posts: 337
Joined: Nov 2014

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's picture
rja3d
Posts: 35
Joined: Mar 2016

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

 

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

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 

 

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