Initiation

rja3d

I’m taking icemantoo’s advice and elaborating a little on how I handled the ‘initiation’ into this club and some other thoughts.  It’s taken me a little while to move past the surgery and come to terms with the cancer diagnosis.    I think you all can identify, and maybe someone will be encouraged by this post (sorry, it's a bit long).   My main concern on Dec 23d when I heard ‘cancer’ was what the surgery and recovery was going to be like and would I be able to get back to taking care of my family like before.   I stuffed the cancer thing into a corner to think about later.  While in the hospital for a week, I was mainly concerned with not hurting myself getting in and out of bed and walking a lot to wake up my large intestine so they’d let me go home for some real rest.  When the doc gave me the path report a few days before I went home, I was thinking well ‘that’s that for now’, surgery, cancer’s gone.     Just some blood tests every six months and I’m good.     jason.2835 referred me to the NCCN for patient care guidelines, and I read everyone’s experiences on this forum. It never dawned on me that I would need to actively ‘manage’ my cancer diagnosis for the rest of my life.   At first, I didn’t see myself as a ‘cancer survivor.’   Those are you guys who’ve been put through the wringer and keep on kicking.    But I am a cancer survivor, and thankful for every minute.   I see now that this is just the start of the rest of my life being hyper-vigilant for any recurrence.   But at the same time, I have peace that God is sovereign and if this is His plan for me then, I have to be ok with it.    I’m thankful that I get to play a part by getting educated and becoming my own best advocate as one of you said, and participating on this forum.   Education and collaboration with you folks makes this better, I can tell already.  

I’ve been reading this forum every day, several times a day and will continue.  I’ll chime in from time to time.   Be advised that I’m praying for the ‘CSN Kidney Forum’ members every morning, and wishing you remarkable people, ‘nothing remarkable’ in all your test results!   May you all know God's peace and healing.  

Jay

icemantoo

Piece of Cake

Jay,

 

 

Looking back, wasn't that initiation easy and a whole lot of fun. WTF

 

 

Icemantoo

daisybud

icemantoo said:

Piece of Cake

Jay,

 

 

Looking back, wasn't that initiation easy and a whole lot of fun. WTF

 

 

Icemantoo

Gosh I totally get it

I feel the same way. It's so hard to wrap your head around the fact you had cancer. I was told too it's gone and just have to do follow-ups.  This all happened in about 5 weeks.  I'm still having a hard time dealing with it. Some days I go about my business like it never happened and then it sneaks in and grabs me hard!

I just feel like it will rear its ugly head again. I told my GP and he said it the nature of the beast, which didn't help me!!  He also has me going for a bone scan and a consultation with the medical onocologist since the urologist that did the surgery doesn't seem to think I need to do either.  I'm glad for the reassurance but now im a little scared again!

Just a new normal for us!

Kim

 

Jojo61

daisybud said:

Gosh I totally get it

I feel the same way. It's so hard to wrap your head around the fact you had cancer. I was told too it's gone and just have to do follow-ups.  This all happened in about 5 weeks.  I'm still having a hard time dealing with it. Some days I go about my business like it never happened and then it sneaks in and grabs me hard!

I just feel like it will rear its ugly head again. I told my GP and he said it the nature of the beast, which didn't help me!!  He also has me going for a bone scan and a consultation with the medical onocologist since the urologist that did the surgery doesn't seem to think I need to do either.  I'm glad for the reassurance but now im a little scared again!

Just a new normal for us!

Kim

 

Jay, it sounds like you have

Jay, it sounds like you have a good grip on things already. Yes, the follow up can be a bit daunting, and even more so, when throwing in the "scanxiety" factor. However, that is a small price to pay for success in winning the fight.

Kim, there is always the fear of cancer rearing its ugly head again, isn't there? It isn't so obvious when we are feeling good and healthy, but it grips us with fear whenever we aren't feeling as good as we should....in our weak and vulnerable moments. But for the most part it is usually just moments. The key is to not let the fear get to you....because then cancer wins. Every time. Ride through the fearful moments....the calm, happy and healthy moments will prevail.

Hugs

Jojo

 

 

APny

Jojo61 said:

Jay, it sounds like you have

Jay, it sounds like you have a good grip on things already. Yes, the follow up can be a bit daunting, and even more so, when throwing in the "scanxiety" factor. However, that is a small price to pay for success in winning the fight.

Kim, there is always the fear of cancer rearing its ugly head again, isn't there? It isn't so obvious when we are feeling good and healthy, but it grips us with fear whenever we aren't feeling as good as we should....in our weak and vulnerable moments. But for the most part it is usually just moments. The key is to not let the fear get to you....because then cancer wins. Every time. Ride through the fearful moments....the calm, happy and healthy moments will prevail.

Hugs

Jojo

 

 

Jojo always says it best. I

Jojo always says it best. I wish I could be as articulate. Wishing you the best, Jay, and thank you for the prayers. With my two year follow up tests looming, I can sure use them. Kim, I totally get the ugly head looming thing. It is indeed the new normal. Bless you all xo

todd121

daisybud said:

Gosh I totally get it

I feel the same way. It's so hard to wrap your head around the fact you had cancer. I was told too it's gone and just have to do follow-ups.  This all happened in about 5 weeks.  I'm still having a hard time dealing with it. Some days I go about my business like it never happened and then it sneaks in and grabs me hard!

I just feel like it will rear its ugly head again. I told my GP and he said it the nature of the beast, which didn't help me!!  He also has me going for a bone scan and a consultation with the medical onocologist since the urologist that did the surgery doesn't seem to think I need to do either.  I'm glad for the reassurance but now im a little scared again!

Just a new normal for us!

Kim

 

Follow Ups

I'm glad you're GP is getting you follow ups. If you were to join any study, they would do a nuclear bone scan, CT of chest/abdomen and pelvis and possibly an MRI of the brain. This would be done to make sure you're cancer free before starting the study. I know, because I joined a study after my first tumor. My thought now is, I should've had all this done after my first tumor whether I joined a study or not. I wanted to know I was cancer free. These scans let me know I really was. They are also great baselines to compare against for future scans.

After surgery, the CT scan of abdomen and pelvis is extremely important (after you heal). It's because the surgery messes up your anatomy and they want to have a baseline to compare against going forward. I think the CT of the chest would be needed for the same reason. It's so they can map whatever little nodules that are there and see how they change over time. Small nodules do not show up on an X-Ray.

I'm incredibly happy I went to a medical oncologist with RCC experience for followups instead of staying with my urologic oncologist. My adrenal tumor might not have been caught for another year or more if I had stayed with my urologic oncologist. As it was, I was on a 6 months CT schedule at the time and when they looked back, it was visible even on the previous scan 6 months earlier but because the shape/size of the adrenal gland hadn't changed yet, they didn't notice it. I guess these radiologists measure every organ and that's how they noticed my adrenal tumor when it got large enough to cause the adrenal gland to enlarge. I'm so thankful for these followups.

Wishing you well,

Todd

todd121

Thanks for posting!

Jay,

Really appreciate you posting your experience. It's not too long! It's how we all get to know you.

I can't seem to keep up here all the time. I'm on the computer at work all day, and by the time I get home I'm sick of computers. Still, I try and stay connected. You guys are all family.

Really appreciate the prayers too.

Todd

daisybud

todd121 said:

Follow Ups

I'm glad you're GP is getting you follow ups. If you were to join any study, they would do a nuclear bone scan, CT of chest/abdomen and pelvis and possibly an MRI of the brain. This would be done to make sure you're cancer free before starting the study. I know, because I joined a study after my first tumor. My thought now is, I should've had all this done after my first tumor whether I joined a study or not. I wanted to know I was cancer free. These scans let me know I really was. They are also great baselines to compare against for future scans.

After surgery, the CT scan of abdomen and pelvis is extremely important (after you heal). It's because the surgery messes up your anatomy and they want to have a baseline to compare against going forward. I think the CT of the chest would be needed for the same reason. It's so they can map whatever little nodules that are there and see how they change over time. Small nodules do not show up on an X-Ray.

I'm incredibly happy I went to a medical oncologist with RCC experience for followups instead of staying with my urologic oncologist. My adrenal tumor might not have been caught for another year or more if I had stayed with my urologic oncologist. As it was, I was on a 6 months CT schedule at the time and when they looked back, it was visible even on the previous scan 6 months earlier but because the shape/size of the adrenal gland hadn't changed yet, they didn't notice it. I guess these radiologists measure every organ and that's how they noticed my adrenal tumor when it got large enough to cause the adrenal gland to enlarge. I'm so thankful for these followups.

Wishing you well,

Todd

Thanks Todd, you are always

Thanks Todd, you are always full of great information. I liked the urologist for surgery but he's just that, a urologist not a cancer dr. Always appreciate the info I get on this sight from everyone. 

Kim

rja3d

icemantoo said:

Piece of Cake

Jay,

 

 

Looking back, wasn't that initiation easy and a whole lot of fun. WTF

 

 

Icemantoo

uh, NO

but it could've been alot worse! 

 

Jay

rja3d

todd121 said:

Follow Ups

I'm glad you're GP is getting you follow ups. If you were to join any study, they would do a nuclear bone scan, CT of chest/abdomen and pelvis and possibly an MRI of the brain. This would be done to make sure you're cancer free before starting the study. I know, because I joined a study after my first tumor. My thought now is, I should've had all this done after my first tumor whether I joined a study or not. I wanted to know I was cancer free. These scans let me know I really was. They are also great baselines to compare against for future scans.

After surgery, the CT scan of abdomen and pelvis is extremely important (after you heal). It's because the surgery messes up your anatomy and they want to have a baseline to compare against going forward. I think the CT of the chest would be needed for the same reason. It's so they can map whatever little nodules that are there and see how they change over time. Small nodules do not show up on an X-Ray.

I'm incredibly happy I went to a medical oncologist with RCC experience for followups instead of staying with my urologic oncologist. My adrenal tumor might not have been caught for another year or more if I had stayed with my urologic oncologist. As it was, I was on a 6 months CT schedule at the time and when they looked back, it was visible even on the previous scan 6 months earlier but because the shape/size of the adrenal gland hadn't changed yet, they didn't notice it. I guess these radiologists measure every organ and that's how they noticed my adrenal tumor when it got large enough to cause the adrenal gland to enlarge. I'm so thankful for these followups.

Wishing you well,

Todd

One Stop Shop? Urologist/Surgeon/Oncologist?

todd121 -  based on your experience/advice, that's the first question i need to ask my doc on 12 May.  Sounds like adding a medical oncologist (RCC specialist) to my team is a good idea, assuming he's not one himself.  Baseline CT sounds like a must do as well.  appreciate all the good info.

 

Jay

todd121

rja3d said:

One Stop Shop? Urologist/Surgeon/Oncologist?

todd121 -  based on your experience/advice, that's the first question i need to ask my doc on 12 May.  Sounds like adding a medical oncologist (RCC specialist) to my team is a good idea, assuming he's not one himself.  Baseline CT sounds like a must do as well.  appreciate all the good info.

 

Jay

My Experience

Hi Jay,

So, to be clear I never attended medical school. Not even pre-med.

Here's my experience. End of November 2012 I looked for a top notch surgeon to figure out what to do about the big tumor in my right kidney. I ended up at UCI medical school in the hands of the head of urology. A terrific surgeon and team removed my right kidney. The tumor, even though it was under 7 cm was in the center of the kidney so they saw no way to get it out with a partial.  I'm incredibly happy with the job he and his team did. However, these are the issues I had that I wasn't satisfied with. First, I was led to believe that if it was kidney cancer, it was Stage 1 and I didn't need to worry much. That once it was removed I was very likely cured because it was a smaller tumor. When the pathology report came back I was Stage 3, because the tumor had infiltrated some of the small veins (this was not visible by CT scan only visible under the microscope of the pathologist). My surgeon's plan was to do a follow-up CT 2-3 months after my surgery, and then every 6 months after that. I think fortunately for me, I have an uncle who is a retired oncologist. He said I should talk to an oncologist. I asked for a referral.

There were no RCC specialists at UCI. The best guy was an oncologist that specialized in melanoma (which it turns out is similar to RCC) and he had some RCC patients, but there was a 3 month wait to see him. So I saw a brand new oncologist who just started working there. Extremely nice guy, but didn't know RCC from his ****. (This may be a bit harsh...) He went onto some website of MSK and entered some info into a program and told me that there was only a 10% chance of my cancer coming back. On the other hand, he did want to do more scans and wanted to look more closely at a spot they saw on my femur to make sure it wasn't a met (my urologist didn't think any of this was necessary). I went online and searched for drug studies in my area for RCC that had been resected and found a couple. I looked up the doctor's that were the contacts for those studies, and that led me to 2 medical oncologists that were top RCC specialists. (One was the mentor of the other, and the older gentleman has been fighting kidney cancer for nearly 30 years). So I went to see them to get second and third opinions.

Both had studies I could join. The interesting thing to me was that both put my risk of recurrence at about 40-50%. Much higher than the first guy.

So, this is what I saw. Urologic oncologist said "You're cured.". Medical oncologist #1 (smart, nice guy, but really didn't know RCC) said you have between a 5-10% chance of recurrence. Medical oncologists #2 and #3 (both RCC experts) independently said my risk was 40-50%. This got my attention. The thing is, medical oncologist #3 pulled up actual studies with data to show me how he knew that my risk was 40-50% that had been done at UCLA.

I did do that drug study and so I got followed really closely the first year. I also got to know medical oncologist #3 pretty well since I see him regularly. The cancer center I go to has 3 years of historical data on me.

BTW, when I had my recurrence last year, medical oncologist #3 told me some things I didn't like much so I found another RCC expert (head of the cancer center at USC medical school) for another opinion. Let's call this man medical oncologist #4. I found out that this other doctor recommends IL2 and has been treating patients with it for a long time and is very experienced with it. My current doctor (medical oncologist #3), doesn't believe in IL2 and won't use it. They didn't differ much in their opinion otherwise, except I found doctor #4 to be more optimistic about my prognosis than #3, which I appreciated. My recurrence was operable, so I haven't needed to think about IL2 or other treatments (fortunately), but I'm very happy to  know if I need it, there's a place to go.

Everytime I've looked for another opinion, I've been happy I did it. And not one doctor has been upset, angry or in any way discouraged me from doing this. My uncle, the retired oncologist, told me that if I ever had a doctor that had a problem with me getting another opinion, to run, not walk away from him. He said any good, competent, ethical doctor would have no problem with me consulting another doctor.

That's my experience in a nutshell. Hope it helps someone in some way. Sorry if it seems like too much information. It is incredibly helpful for me to tell this story.

Best wishes,

Todd

P.S. Sticking with the urologic oncologist might have turned out fine. He was a very competent guy and a great surgeon. He might've discovered my second tumor and removed it. Still, I'm happy with the choices I've made so far with regards to my care. I feel more secure knowing I'm with docs that see many RCC patients a week and are managing the care of many RCC cases, instead of ones that are dealing with other things.

rja3d

todd121 said:

My Experience

Hi Jay,

So, to be clear I never attended medical school. Not even pre-med.

Here's my experience. End of November 2012 I looked for a top notch surgeon to figure out what to do about the big tumor in my right kidney. I ended up at UCI medical school in the hands of the head of urology. A terrific surgeon and team removed my right kidney. The tumor, even though it was under 7 cm was in the center of the kidney so they saw no way to get it out with a partial.  I'm incredibly happy with the job he and his team did. However, these are the issues I had that I wasn't satisfied with. First, I was led to believe that if it was kidney cancer, it was Stage 1 and I didn't need to worry much. That once it was removed I was very likely cured because it was a smaller tumor. When the pathology report came back I was Stage 3, because the tumor had infiltrated some of the small veins (this was not visible by CT scan only visible under the microscope of the pathologist). My surgeon's plan was to do a follow-up CT 2-3 months after my surgery, and then every 6 months after that. I think fortunately for me, I have an uncle who is a retired oncologist. He said I should talk to an oncologist. I asked for a referral.

There were no RCC specialists at UCI. The best guy was an oncologist that specialized in melanoma (which it turns out is similar to RCC) and he had some RCC patients, but there was a 3 month wait to see him. So I saw a brand new oncologist who just started working there. Extremely nice guy, but didn't know RCC from his ****. (This may be a bit harsh...) He went onto some website of MSK and entered some info into a program and told me that there was only a 10% chance of my cancer coming back. On the other hand, he did want to do more scans and wanted to look more closely at a spot they saw on my femur to make sure it wasn't a met (my urologist didn't think any of this was necessary). I went online and searched for drug studies in my area for RCC that had been resected and found a couple. I looked up the doctor's that were the contacts for those studies, and that led me to 2 medical oncologists that were top RCC specialists. (One was the mentor of the other, and the older gentleman has been fighting kidney cancer for nearly 30 years). So I went to see them to get second and third opinions.

Both had studies I could join. The interesting thing to me was that both put my risk of recurrence at about 40-50%. Much higher than the first guy.

So, this is what I saw. Urologic oncologist said "You're cured.". Medical oncologist #1 (smart, nice guy, but really didn't know RCC) said you have between a 5-10% chance of recurrence. Medical oncologists #2 and #3 (both RCC experts) independently said my risk was 40-50%. This got my attention. The thing is, medical oncologist #3 pulled up actual studies with data to show me how he knew that my risk was 40-50% that had been done at UCLA.

I did do that drug study and so I got followed really closely the first year. I also got to know medical oncologist #3 pretty well since I see him regularly. The cancer center I go to has 3 years of historical data on me.

BTW, when I had my recurrence last year, medical oncologist #3 told me some things I didn't like much so I found another RCC expert (head of the cancer center at USC medical school) for another opinion. Let's call this man medical oncologist #4. I found out that this other doctor recommends IL2 and has been treating patients with it for a long time and is very experienced with it. My current doctor (medical oncologist #3), doesn't believe in IL2 and won't use it. They didn't differ much in their opinion otherwise, except I found doctor #4 to be more optimistic about my prognosis than #3, which I appreciated. My recurrence was operable, so I haven't needed to think about IL2 or other treatments (fortunately), but I'm very happy to  know if I need it, there's a place to go.

Everytime I've looked for another opinion, I've been happy I did it. And not one doctor has been upset, angry or in any way discouraged me from doing this. My uncle, the retired oncologist, told me that if I ever had a doctor that had a problem with me getting another opinion, to run, not walk away from him. He said any good, competent, ethical doctor would have no problem with me consulting another doctor.

That's my experience in a nutshell. Hope it helps someone in some way. Sorry if it seems like too much information. It is incredibly helpful for me to tell this story.

Best wishes,

Todd

P.S. Sticking with the urologic oncologist might have turned out fine. He was a very competent guy and a great surgeon. He might've discovered my second tumor and removed it. Still, I'm happy with the choices I've made so far with regards to my care. I feel more secure knowing I'm with docs that see many RCC patients a week and are managing the care of many RCC cases, instead of ones that are dealing with other things.

Thanks Todd

What an experience - i'm glad you shared it with me - sounds very similar to mine.   I'm more fully prepared to discuss with my doc on 12 May thanks to this information.   

 

Thanks again Todd

Jay