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1st scan after surgery

cralleycat's picture
cralleycat
Posts: 7
Joined: Mar 2013

I had a robotic partial nephrectomy on July 5 2013. pathology showed renal cell carcinoma of the clear cell type and fuhrman grade 2. I just had my 3 month follow up with the doc today and he told me that my scan showed no signs of recurrence. (Yay!) When I got home, I read the report on the scan and it shows "a 1.2 cm cyst in the interpolar region of the right kidney" (the same kidney that had the cancer) Should I be concerned? The doctor didn't mention it in the office... an oversight? or nothing to worry about? Undecided

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Cralley,

At this point a 1.2 cm cyst is nothing to worry about. Many of us have cysts in addition to the tumor. I had a left neph 11 years ago (they were not doing partials than). Since than they keep watching a simliar size cyst in the right kidney. Hopefully yours will stay a cyst. Be sure to follow up your uncertainty with the doctor. What do I know?  All of my operations were performed on a board game when I was a kid. So this is just my opinion that you should take wth a grain of salt.

 

Icemantoo

Galrim's picture
Galrim
Posts: 267
Joined: Apr 2013

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

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

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 Undecided

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!

 

NanoSecond's picture
NanoSecond
Posts: 503
Joined: Oct 2012

With all due respect only you and you alone are your best health advocate.  You should not be giving your urologist (or any doctor) final decision power over your future. 

First off - you absolutely need to undergo a CT scan of your Chest/Abdomen/Pelvis and not simply an X-Ray.  An X-ray of the chest is inadequate. 

Second - your urologist is not an oncologist.  You have cancer, not a urological disorder.

Please seek a second opinion with an oncologist. That may help give you the peace of mind you seek.  But if you rely on a "clear" X-ray it may easily miss finding any mets early.

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

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. 

NanoSecond's picture
NanoSecond
Posts: 503
Joined: Oct 2012

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.

srbelle1
Posts: 123
Joined: Jul 2013

with all due respect to your elderly urologist, an oncologist is definitely NOT overkill when you have cancer and even an oncologist should be knowledgeable about kidney cancer, which not all are.

an x-Ray did not pick up my husband's large mass on his right kidney or the met to his spine. It read "unremarkable" days before the CT scan AND MRI picked them up.

sarah

todd121
Posts: 495
Joined: Dec 2012

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

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

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

Babsokl's picture
Babsokl
Posts: 8
Joined: Oct 2013

If I read your posts correctly, you live in OKC? If you are looking for a great oncologist, I see Dr. Aleda Toma and her sister Dr. Gigi Toma is a nephrologist. They are both great doctors. I have CT scans for follow ups. Listen to your inside voice. You're are your own best advocate! 

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Yes, I live in OKC, Mustang, to be exact.  If you live in OKC, and it sounds like you do, you probably know where Mustang is.  Thanks for the name, I'm going to check her out!!

Sindy

cralleycat's picture
cralleycat
Posts: 7
Joined: Mar 2013

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...

 

 

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

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

cran1's picture
cran1
Posts: 126
Joined: Mar 2013

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's picture
twinthings
Posts: 381
Joined: Jun 2013

I'm stealing your no s*** line and using it as my own, whenever appropriate Wink!  Love it!!  

Skagway Jack's picture
Skagway Jack
Posts: 67
Joined: Oct 2013

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

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

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

angec's picture
angec
Posts: 611
Joined: Mar 2012

Was the cyst on the kidney before the surgery, also on the last US or CT?  I would seek a second opinion if it were me.  I don't understand having surgery and then still having a remaining cyst on the same kidney.  I like to double check everything and be sure what things are.  It is probably nothing, but i would double check to be sure!

 

Twinthings:  Sorry to hear about your parents! That must have been awful!  Nano is correct! You must go to see an Ocologist. You don't have kidney issues, you had cancer!  My mom's urologist told her she must see an Oncologist and not to come back to him unless it has to do with general kidney function.  It is not safe to have just an xray of the chest. Most xrays really can't pick up and accurrately identify recurrence.  You need to get a ct scan of the pelvis, abdomen and chest.  Most people get a full body pet/ct scan.  Don't settle for anything less than ct. Even though yours was grade 2, RCC is a very sneaky disease.  Most likely you won't have any further issues, but you don't want to find out too late if you do!  Always, always have an Oncologist, what more can the urologist do for you? Why is he ordering chest xrays? That is not his field either!  

It is a shame that the care is so completely different from one doctor to the next. Alot of Oncologists aren't even aware of or using the newest medicines on the market for RCC. It is a scary thing!  But one thing I know for sure, a patient has to be in the know these days!  We must been in charge of our treatment and feel comfortable with what we are getting. 

All my best!

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

and I'm finding my voice.  You are right, I need to be in charge of my treatment!  Thanks for the advice! 

Best wishes to your mama!

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Sindy, I was seeing my urologist/surgeon, and while he is an excellent surgeon, he kept saying " no worries.  I got it all" And that all I needed was chest X-ray....i changed over to an oncologist and I just had my first chest CT, and I have nodules bilaterally in both lungs, and a mass on the right side of my thyroid.  These are in addition to the spot on my left kidney and on my liver.  I just had a PET scan on Friday and will find out what's going on, on Tuesday.  I felt like I didn't want to " upset" my surgeon, but I really had a gut feeling there was a little bit of the "I'm God and I healed you, now go and forget about it" thing going on with him, so I cancelled my 6 month appt with him and made one with the oncologist.  I'm feeling much more secure now and feeling like I'm being proactive in my treatment.  make an appointment with an oncologist, and make it soon.

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Thank you, Tillie!  I'm getting right on it.  I've got a fairly light work load today so I plan to surf the web and make some phone calls. 

I've still got fingers crossed for best possible outcome!

 

Lifting you in prayer

Skagway Jack's picture
Skagway Jack
Posts: 67
Joined: Oct 2013

twinthings, I Have an interesting story about a Nephrologist in OKC.  One of my distant relatives has a relation who is a Dr. in OKC, a very experienced and reputable one.  Some family suggested I call him for a second oppinion when my cancer was discovered.  I did and he took time to talk to me.  I am a former military officer and not used to candy coating things, but this Dr. bedside manner even had me a bit shook, and unnecesarlily according to my Uroglogist/surgeon.  I decided to file his opininon in the free advice box recognizing the value of free advice as being worth exactly what I paid for it.  In anycase I concur completely that having an oncologist is the best longterm plan.

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Being a Marine brat, having had 2 brothers Navy, two brothers Army and a son currently in the Air Force, I had you pegged as a military man.  And you're right about value of free advice, you get what you pay for. 

I am going to seek out an oncologist today and hopefully schedule an appointment for the next time I'm in OKC.  I pray God lands me in the right hands! 

Thanks for the advice!!

Sindy

 

 

todd121
Posts: 495
Joined: Dec 2012

I was told that the minimum is a chest xray and CT of lower abdomen and pelvis at 4-6 month intervals for 2 years then yearly to 5 years.

However, I was Stage 3 Grade 3, and my RCC specialist is doing CT of chest/abdoment and pelvis at 4 month intervals to 2 years, then yearly after that. I'm in a drug study for an adjuvant therapy, so they are doing blood work at 6 week intervals.

Todd

Skagway Jack's picture
Skagway Jack
Posts: 67
Joined: Oct 2013

When they discovered my tumor they found it on a CT, they ordered a chest Xray when I explained my family history of lung cancer (both Mom and Dad).  In this thread and others i have seen several stories and references to chest xrays not being thorough enough diagnostically.  I will be insisting they do a complete Chest and abdomen CT on my regular screenings. 

twinthings's picture
twinthings
Posts: 381
Joined: Jun 2013

Given my family history, I too will insist on nothing less! 

I'm gaining courage from you and all the other supportive people on this forum!  Not to mention learning so much in regards to the differences in follow-up care.  This forum has definitely opened my eyes to the fact that a chest x-ray is not sufficient.  I am going to change the course of my treatment!!

cran1's picture
cran1
Posts: 126
Joined: Mar 2013

I have cyst right kidney and spleen....I'm not concerned! Joking if u are worried ask questions.

todd121
Posts: 495
Joined: Dec 2012

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

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