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Percy_STL

Hello peeps. 35 years old and newly diagnosed since RCC took advantage of my welcoming nature to find refuge in my right kidney. Fortunately, it was caught before it could wreak a complete havoc. Incidental find was based on pelvic floor muscle tightness trigerred urinary issues (I have some series muscle issue going) which led to an US, followed by a contrast enhanced CT (btw, is it normal to have to ask you to take both oral and IV contrast for just an abdomen CT?). Results revealed a 2 cm mass on my right kidney. Met with a well known urology surgeon in the STL area and he recommended a robotic partial nephrectomy. 

A week before my surgery (March 29), he sent me for some blood work and a chest xray (I have no clue why he didnt want a chest CT). Chest Xray revealed a tiny calcified granuloma on one of the lobes and everything else was reported normal. My pathology report was  a solid tumor (2.0 x 1.3 x 0.9 cm) T1a, G2, 0.1 cm to resection, all negative margins, no invasion of any sort, no necrosis etc and the overall pathological grade was Pt1aNxMx, ccRCC.  The surgeon has assured me that almost 99% of the kidney is still intact, although I'm very suspicious of that high a percentage even if the tumor was only 2 cm.

I have been recovering well since the surgery and even started working full time 12 days after. Even though I went through extreme bouts of fatigue every now and then, I have managed to stay awake anywhere between 15-16 hours most of the time after the first 2 weeks.  I had my post surgery follow-up with the surgeon couple of weeks ago and we started talking surveillance. And herein lies my concern:

1. He has put me up for a 3 month abdomen CT and thats it. Nothing for my chest or pelvis. I have no baseline chest and pelvic CT and his decision is definitely not sitting well with me. Should I be discussing this with him? Or can I ask my PCP to send me out for a chest and pelvis ct. I have very many years of surveillance left and a simple pollen allergy/cough/sinus pressure is driving my anxiety levels up.  

2. For my stage/grade, is there a need for an oncologist? Is it time to thank my surgeon and move on to an oncologist?

Welcome your thoughts and comments.

Thanks to everyone in advance.

Percy

icemantoo

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

Dominick0711

This sounds almost word for

This sounds almost word for word like one of my first posts on this site.  I know exactly how you feel as I was concerned about No chest or pelvic CT again also not having had a baseline before and I was curious about seeing an Onc.  I discussed my concern with my doc on the first issue and he explained why he thought the ct of chest and pelvis wasn’t needed but because i asked he ended up ordering it to make me feel at ease.  I recommend you talk to your doc as he will likely order the test if you express concern.  

 

I sooke to to my pcp and another onc for an opinion on whether I should seperatly be seen by an oncologist and both said it wasn’t warranted with my diagnosis.  My tumor was larger then yours at 3.9cm.  Based on your tumor size and characteristics I think you will did that most will say you don’t need an oncologist but in the end you should do whatever you need to do for peice of mind.

a_oaklee

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.

Percy_STL

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,

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. 

Percy_STL

Dominick0711 said:

This sounds almost word for

This sounds almost word for word like one of my first posts on this site.  I know exactly how you feel as I was concerned about No chest or pelvic CT again also not having had a baseline before and I was curious about seeing an Onc.  I discussed my concern with my doc on the first issue and he explained why he thought the ct of chest and pelvis wasn’t needed but because i asked he ended up ordering it to make me feel at ease.  I recommend you talk to your doc as he will likely order the test if you express concern.  

 

I sooke to to my pcp and another onc for an opinion on whether I should seperatly be seen by an oncologist and both said it wasn’t warranted with my diagnosis.  My tumor was larger then yours at 3.9cm.  Based on your tumor size and characteristics I think you will did that most will say you don’t need an oncologist but in the end you should do whatever you need to do for peice of mind.

Hi Dominick,

Hi Dominick,

I m definitely going to talk to my surgeon and ask him to put me in for a chest and pelvic CT. If he tries to talk me out of it, I’ll get my PCP to recommend the scans. May get nasty with the insurance company but I dont want live in constant anxiety with every bit of cough and bouts of fatigue. Just read your bio - have beard chromophobe isn’t quite as aggressive as clear cell. Glad to hear everything was caught early for you too. 

 

 

Percy_STL

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

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

Percy_STL said:

Hi Oaklee

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.

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.  

Percy_STL

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

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

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.  

 

Percy_STL

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

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. 

TeeBizzle

My Follow Up

I do no CTs for my follow up. They just do chest xray and ultrasound every 6 months. I had a small RCC tumor and after my 6mth scan- should be good. lifetime monitoring. 

I looked into getting an oncologist, but a lot of my research seemed to show them as more involved in treatment for radiation, chemo, immuno therapy and not really just for discussion and after care (i could be wrong)

My anxiety went through the roof and I went to the hospital when I had really bad coughing fits to rule out pneumonia. Maybe a pulmonologist since you're concern is with the lungs? If i'm reading that right. They may be better to deal with any chest issues. An xray may be the way to go, less of a dose of radiation. Here are some amounts:

https://www.radiologyinfo.org/en/info.cfm?pg=safety-xray

Also, it sucks being younger (I was 38) but once you recover there are some young adult programs. I'm going on my trip this year with First Descents- they're a company based in Colorado that gives you a trip to go kayaking, surfing, or mountain climbing. They also have local hiking trips and the people I've met are really nice, dealing with the same crap we are. Check them out before you turn 40.

Epic experience, Reel Recovery and Kolina Orchard have some good retreats you (and anyone else) can look into.

Good luck and being younger should help you bounce back quicker.

mukhopadhyay.arka01

TeeBizzle said:

My Follow Up

I do no CTs for my follow up. They just do chest xray and ultrasound every 6 months. I had a small RCC tumor and after my 6mth scan- should be good. lifetime monitoring. 

I looked into getting an oncologist, but a lot of my research seemed to show them as more involved in treatment for radiation, chemo, immuno therapy and not really just for discussion and after care (i could be wrong)

My anxiety went through the roof and I went to the hospital when I had really bad coughing fits to rule out pneumonia. Maybe a pulmonologist since you're concern is with the lungs? If i'm reading that right. They may be better to deal with any chest issues. An xray may be the way to go, less of a dose of radiation. Here are some amounts:

https://www.radiologyinfo.org/en/info.cfm?pg=safety-xray

Also, it sucks being younger (I was 38) but once you recover there are some young adult programs. I'm going on my trip this year with First Descents- they're a company based in Colorado that gives you a trip to go kayaking, surfing, or mountain climbing. They also have local hiking trips and the people I've met are really nice, dealing with the same crap we are. Check them out before you turn 40.

Epic experience, Reel Recovery and Kolina Orchard have some good retreats you (and anyone else) can look into.

Good luck and being younger should help you bounce back quicker.

How old are you now?

Hey TeeBizzle , How old are you now? I was 28-29 when I was diagnosed --Doctors mentioned they almost never had patients in 20s with Kidney cancer!

TeeBizzle

mukhopadhyay.arka01 said:

How old are you now?

Hey TeeBizzle , How old are you now? I was 28-29 when I was diagnosed --Doctors mentioned they almost never had patients in 20s with Kidney cancer!

Hey

Hey, I'm 39. It was pretty recent - last august for surgery. Diagnosed with a tumor in June. They also said it's rare for people in their 30s. go figure. I just wonder what caused it- I drink a lot of water and don't trust Long Island's water supply. I also met a nurse at the hospital who had the same kidney cancer- around my age. 

mukhopadhyay.arka01

TeeBizzle said:

Hey

Hey, I'm 39. It was pretty recent - last august for surgery. Diagnosed with a tumor in June. They also said it's rare for people in their 30s. go figure. I just wonder what caused it- I drink a lot of water and don't trust Long Island's water supply. I also met a nurse at the hospital who had the same kidney cancer- around my age. 

They cant tell you why

At least 1 thing I am sure about now is that they cant tell you why and how! They also can tell you what to do! You can do some due diligence but that doesnt gurantee anything

You can say age is on our side but then sometimes that also doesnt matter!

At the end of the day, I would say its pure luck how it works out for you!

I go tomorrow to check with my Urologist what can I do with the cyst they found out in my right kidney!