1st scan after surgery

If you close-read your scan results (not just the conclusion) you will probably find lots of things. I have a cyst on my remaining kidney, 2 cysts on my liver and 3 lung infiltrates. All unchanged over the last 3 years. They watch them, but at the same time they are deemed harmless to the point where they are never mentioned in the scan conclusion, only in the detailed radiology report.

/G

Just had a right radical nephrectomy on 15 Oct.  Pathology was classified as T1B Clear Cell Carcinoma, margins were clear, nodes were clear.  Any opinions on what the standard of care would be for follow-up testing? I am being told I will be doing blood test quarterly, and CT 6 mths intervals for next two years. I read somewhere here on the forum about quarterly CT- scans for first 2 years.  Thanks in advance, Jack

Skagway Jack said:

Standard of care

Just had a right radical nephrectomy on 15 Oct.  Pathology was classified as T1B Clear Cell Carcinoma, margins were clear, nodes were clear.  Any opinions on what the standard of care would be for follow-up testing? I am being told I will be doing blood test quarterly, and CT 6 mths intervals for next two years. I read somewhere here on the forum about quarterly CT- scans for first 2 years.  Thanks in advance, Jack

I have an opinion, Jack, but it apparently differs from that of my doctor.  It seems while I am only scheduled for a chest x-ray at my 6 month post-op, most people on this furum are having ct's.  Following the advice of NanoSecond, I am going to seek the care of an oncologist when I return to OKC for my 6 month work-up, in November.  Currently, I'm just seeing my surgeon.  My surgeon has a way of making me feel silly for wanting to see an oncologist.  I've asked him twice and both times he's just brushed it off.  He reminds me that I no longer have cancer and that seeing an oncologist while under his care would just result in unnecessary tests. 

I'm just gonna have to listen to my instincts and do what I think is best for me.  I am less than 13 years from the age my parents were when they died...daddy, colon cancer and mama's was an undetermined primary location, it was in her lungs, brain and bone at time of diagnosis.  They were in their early 60's, dying just 9 months apart.  Granted, I have healthcare and they, sadly, did not.

All the more reason what happened to them does not have to happen to me...I have healthcare! 

Hope your recovery is going well!

Sindy

twinthings said:

Thank you for your thoughts,

Thank you for your thoughts, Nano! 

According to my urologist, to see an oncologist right now would be "overkill", as, the oncologist would be ordering the same tests that he (urologist) will be ordering and there's no need to double up, in his opinion.  It made sense at the time, but the more I read about patients having ct scans, MRI's or PET scans as a part of their follow-up care, I worry the chest x-ray isn't sufficient.  I will ask him agin when I have my chest x-ray, late November.  If he continues to hesitate, I'll seek on oncologist on my own.  I guess I need an oncologist that specializes in kidney cancer? 

I think it's a sad day when patients are left to figure these things out for themselves rather than relying on our doctors to take the necessary measures to ensure we get the best possible care, with qualified specialists. 

My doctor doesn't seem to think that the fact that I lost both of my parents to cancer, is noteworthy.  They died in their early 60's...I'll be 50 on my next birthday, too close for comfort if you ask me. 

Well yes, it is a sad day but that is why the internet is such an amazing tool.  You can get help and advice from other patients and their caregivers - and they always advocate for the patient - not for the statistics.

You absolutely do owe it to yourself to get under the care of an oncologist who is well experienced with RCC patients.  And always keep a questioning mind whenever listening to the "experts" - as they are not infallible.  Sorry, but that is just the way it is.

twinthings said:

3 month scan?

cr-personnally speaking, I'd be concerned unless and until I called the doctor's office and, at the very least, speak to the nurse to be absolutely certain there wasn't an oversight.  But, I'm a worrier by nature...hubby says I look for things to worry about . 

I had a radical nephrectomy May 29th.  I am scheduled for my first scan on November 27th, and by scan, I mean chest x-ray.  My RCC was Clear Cell like yours and measured in at 4.7 cm, also a grade 2. 

I am blown away at the vast differences in the standard of care and can't seem to figure out whether it's due to demographics or if one sees a urologist vs an oncologist.  I see a urologist.  I asked him if I needed to be under the care of an oncologist and he said, not necessarily.  He said if I wanted to see an oncologist, he'd refer me to one when I am 1 year post-op, until then he will follow me.  IF I want to?  Should I have a choice?  I want a doctor who tells me what I need to do based on his professional opinion and evaluation of my medical/family history.  He's a wonderful, highly respected urologist in OKC, his specialty being transplants, but, he's elderly and soooo forgetful!   I hope he's practicing today's medicine and not still practicing in the dark ages!

I hope you get answers and with those answers, comes peace of mind.  Hope you'll keep us posted!

 

Get a CT. My favorite line from my doctors since this began is..( I'm not concerned )...Next time I hear it my response will be. Well no **** it's not you with kidney cancer;)!

twinthings said:

Thank you for your thoughts,

Thank you for your thoughts, Nano! 

According to my urologist, to see an oncologist right now would be "overkill", as, the oncologist would be ordering the same tests that he (urologist) will be ordering and there's no need to double up, in his opinion.  It made sense at the time, but the more I read about patients having ct scans, MRI's or PET scans as a part of their follow-up care, I worry the chest x-ray isn't sufficient.  I will ask him agin when I have my chest x-ray, late November.  If he continues to hesitate, I'll seek on oncologist on my own.  I guess I need an oncologist that specializes in kidney cancer? 

I think it's a sad day when patients are left to figure these things out for themselves rather than relying on our doctors to take the necessary measures to ensure we get the best possible care, with qualified specialists. 

My doctor doesn't seem to think that the fact that I lost both of my parents to cancer, is noteworthy.  They died in their early 60's...I'll be 50 on my next birthday, too close for comfort if you ask me. 

Do you need his referral because of insurance? Are you in an HMO? In any case, you can get a referral from your family doctor.

I would see an oncologist. He is not an oncologist. In fact, I wouldn't even see any oncologist. I'd see one who knows something about RCC and has some experience with it. There are plenty of oncologists who don't. This is not a common cancer.

If you want another opinion, it is up to you. He's told you his opinion. If you are concerned about his opinion, get another one.

My uncle is a medical oncologist with 40 years experience. He told me to go see specialists in this. He himself only had a couple of cases of this cancer in his career and he consulted on both of them with other specialists or even sent them to other specialists.

He told me that any good doctor will not mind you getting another opinion. If a doctor has a problem with you getting another opinion, then beware of that doctor.

I've seen you post several times now that you have a concern about this. I really think you should listen to that little voice that's telling you to get another opinion and see a medical oncologist. This is your health, not his. And he frankly may not know enough about this to make an informed decision. My very respected urologic oncologst told me I was likely cured and didn't need concern myself about it coming back. It took 2 more opinions before I found out what really was the case about my prospects. The first medical oncologist I saw was fresh out of school and he also was wrong about my prognosis. Only when I saw 2 RCC medical oncologists did I get a clear picture of my prognosis and what the best way to follow me would be. Actually, even the first medical oncologist was going to do more follow up tests than the urologic oncologist, who, like yours, wanted to do chest xray and lower abdomen CT at 6 months and 1 year.

This talk about "releasing" you. What are you? A fish? What hold does he have on you?

Sorry for the tone here, but I think you need a little push.

Todd

Cysts are very common especially as we get older.

Older people (over 50) very often have one or more cysts. Large size or number can affect kidney function. I'd ask my doctor about it, but it's probably nothing to worry about.

Todd

todd121 said:

It's Up To You Not Him

Do you need his referral because of insurance? Are you in an HMO? In any case, you can get a referral from your family doctor.

I would see an oncologist. He is not an oncologist. In fact, I wouldn't even see any oncologist. I'd see one who knows something about RCC and has some experience with it. There are plenty of oncologists who don't. This is not a common cancer.

If you want another opinion, it is up to you. He's told you his opinion. If you are concerned about his opinion, get another one.

My uncle is a medical oncologist with 40 years experience. He told me to go see specialists in this. He himself only had a couple of cases of this cancer in his career and he consulted on both of them with other specialists or even sent them to other specialists.

He told me that any good doctor will not mind you getting another opinion. If a doctor has a problem with you getting another opinion, then beware of that doctor.

I've seen you post several times now that you have a concern about this. I really think you should listen to that little voice that's telling you to get another opinion and see a medical oncologist. This is your health, not his. And he frankly may not know enough about this to make an informed decision. My very respected urologic oncologst told me I was likely cured and didn't need concern myself about it coming back. It took 2 more opinions before I found out what really was the case about my prospects. The first medical oncologist I saw was fresh out of school and he also was wrong about my prognosis. Only when I saw 2 RCC medical oncologists did I get a clear picture of my prognosis and what the best way to follow me would be. Actually, even the first medical oncologist was going to do more follow up tests than the urologic oncologist, who, like yours, wanted to do chest xray and lower abdomen CT at 6 months and 1 year.

This talk about "releasing" you. What are you? A fish? What hold does he have on you?

Sorry for the tone here, but I think you need a little push.

Todd

Thank you, Todd!  I get everything your'e saying and I agree with all of it.  And I agree I need a little push.  I'm almost embarrassed to share this but here goes...I feel a certain sense of loyalty to my surgeon.  My situation is made somewhat more difficult than the average patient with kindey cancer, only in that, I live in Oklahoma and work in Ohio.  Please understand, I'm not in any way saying my cancer is more difficult, just my situation surrounding the cancer treatment, in general, in terms of scheduling appointments.  I'm one of the lucky ones, I get that for sure!

Following an incidental finding while working in Ohio, I returned to Oklahoma thinking I'd get right in to see a urologist, confirm the diagnosis and schedule surgery/treatment on my next routine visit home.  Yeah right!  Not quite that easy.  Every doctor I called was at least two weeks wait.  I didn't have two weeks, as I had to be back in Ohio in one week.  I know cancer is more important than work but, no work, no money for cancer treatment...simple math. 

So, my daughter's boyfriend's dad is a defense attorney in OKC and happens to be good friends with one of the leading kidney transplant specialists in OKC.  My daughter's beau, Park, encouraged me to email his dad.  Within 15 minutes of hitting the send key, Parks dad called me and told me the doctor was expecting my call.  They got me in that very day, did ct with contrast, confirmed diagnosis, discussed options such as partial vs radical (I actually didn't have an option, as my tumor had grown deep into the kidney whereas usually, the tumor grows outward off the surface, or atleast I think that's how he explained it) and worked me in to his tight surgery schedule so that I could get back to Ohio as quickly as possible.  WOW!  He went above and beyond the call of duty.  When he told me he needed to confer with his collegues for the best route to reach the kidney, I knew he had a full appreciation of the level of difficulty he would be dealing with.  You see, I've had 7 seperate surgical hernia repairs, 6 of which involved mesh and the final one resulting in a total of 11 incisions scattered about my belly, also, 4 procedures to remove thick ropy adhesions in the abdomin, not to mention a total abdominal hyst., gallbladder removal, appendectomy and tubaligation.  I was completely confident that he could remove the kidney, with tumor completely intact and undisturbed, even amongst the adhesions and mesh.  So, at that time, given my surgical history, having an excellent surgeon was more important than whether or not he was schooled in RCC.  Of course, before I did anything, I googled his name and read his credentials.  Very impressive.  I read patient reviews, also impressive.  So, to summarize, I think he did an excellent surgery and I think he absolutely has my best interest at heart but he's not the least bit aggressive in his attitude towards cancer.  Afterall, I am cured.  I no longer have cancer.  It was cut out.  That's what his attitude says to me. 

I am going to take your advice and seek a medical oncologist specializing in RCC.  I will be going home for Thanksgiving to have my x-ray, (no ct at 6 mo, just chest x-ray and blood work) and I will ask the doctor again for a referral.  He will give me one if I give him no choice!! 

To answer your question, my insurance is PPO, so technically no, I don't need a referral but I certainly don't know of any oncologists, let alone ones who scecialize in RCC.  And I don't have a family doctor.  All I ever see is my "womens" doctor, once a year without fail but really just for a mammogram...everything else has been removed : /

Your story will prevent me from ending up with the wrong kind of oncologist, so thank you for sharing.  Kuddos to your uncle for telling you straight up to go see someone who knows better than him, the trials and tribulations, of RCC.  He sounds like a good man!!

Sindy

cralleycat said:

twinthings,
I was diagnosed

twinthings,

I was diagnosed in March with an incidental finding of a 2.5 cm kidney mass from a CT scan looking for a hernia at my local emergency room. I was admitted for a 48 hour observation while the urology department tried  to apparently get authorization from my insurance company to "go ahead and just take it out since you're already here and you'll just have to have it removed eventually anyway".. Thank goodness my insurance company denied the authorization and I was sent home to follow up on my own. At that point I had had the CT scan from the ER and an MRI that they performed while I was there. I decided to do some research and since I live in South Florida, I am fortunate to have several great medical centers relatively close to choose from. I saw 2 different urologic oncologists.. first at University of Miami and then at Cleveland Clinic Florida. I went with the latter based on their extremely low complication rate. (I've had 2 heart attacks in the last 2 years) My tumor was small as far as kidney tumors go but it was giant to me..and i know i made the right choice by going to the best I could find. at any rate.. I would suggest seeing an oncologist if you feel the urologist isn't serious enough. Besides.. a urologic oncologist is way more versed in this cancer where the urologist may not be...

 

 

I thought the same thing about my tumor size...tho it sounds little at just 4.7 cm, it was HUGE, to my minds eye.  Just the very thought of anything cancerous growing inside me, freaked me out, no matter how small. 

I'm sorry to hear about your heart attacks, talk about scary!!  You look too young to have such serious medical problems.  Probably why you're able to give such good advice, huh?!

All my best,

Sindy