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Is a brain scan (or some test) part of a normal work-up for all patients who have follow-up scans?

a_oaklee
Posts: 446
Joined: Nov 2013

I am totally in the dark about this topic and I was wondering if someone could inform me.  My husband is Stage 4 with mets to bones.  Sometimes I read on here where someone has had mets to the brain and is undergoing radiation.  What I would like to know is how are brain mets found?  What test is used?  Is it part of the routine 3 month scans to look at the brain in a person with Stage 4? 

I was under the impression that the PET/CT that my husband has cannot be used to find mets in the brain because the whole thing "lights up" due to the high metabolism in that area.  In a way I am afraid to even ask this question, because I don't want to go looking for trouble.  I don't even want to bring up the subject with the oncologist. 

Thanks.

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

For myself and others with small tumors I have not seen the use of brain scans. The answer may be different where there has been evidence of mets putside the Kidney. You deffinately would be able to get a more definitive answer by asking an Oncologist rather than us guys.

 

 

Icemantoo

a_oaklee
Posts: 446
Joined: Nov 2013

Thank you for your response.  I really just don't know very much about how to check the brain/head, or shall I say "above the chest".  I've read where members have follow-up PET/CT or just CT of chest, abd, pelvis...and I was just wondering if anyone gets their head checked? 

I'm starting to think it's a stupid question. 

But it seems to me, being a Stage 4 (my husband), we are getting checked out in order to be proactive and get things found in the early stages.  So, if brain mets occur, I was wondering if they are found through an exam, or found because of neurological symptoms. 

TillieSOK's picture
TillieSOK
Posts: 252
Joined: Jul 2013

I'm a stage 3a and am scheduled for a full body scan the first of March.  They were going to do it earlier but I've had so many scans in the past 8 months, since surgery, that they wanted to give me a little break. :). I have nodules in both lungs that have been stable so far, and they are going to be looking for anything else that happens to show up on the full body, which will include the brain. Also have had several places "light up" on the PET that on further testing and scans appear to be benign, but "warrant close watch" in the future. So...who the heck knows?  You just roll with it and hope for "it's nothing". Good luck, and keep us posted.

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

My husband had MRI's of the brain when he had bone mets to his skull, at the time they were negative.  He also had a venogram of his head to see the veins.  His brain mets were found because he felt pressure in his head and had a mild seizure.  He was put on keppra for brain swelling and had stereotactic radio surgery for the brain mets.

My heart goes out to you both.  Prayers and good thoughts too.

Arleen

Darron's picture
Darron
Posts: 308
Joined: Jun 2013

Upon being diagnosed as stage IV I had a full body bone scan and a brain MRI.

It is a good thing to have them done. it is better to know you are OK. 

I have not had a PET scan. My tumor  was not a fast grower, clear cell. PET would not be effective for me, that is not the case with all with RCC It depends in the individual.

Best of luck

texMD
Posts: 13
Joined: Jun 2013

A brain MRI with gadolinium contrast is the typical test to assess for brain mets.  A brain MRI is done at the initial time of diagnosis as a baseline and then not done routinely with the other scans unless it is clinically indicated (ie, headache, blurred vision, etc).  Other special situations may apply, ie, enrolling in a clinical trial that may necessitate a repeat scan.  I would not be afraid to bring this up with your oncologist since this is concerning to you and you may just need some reassurance from the doc.  best of luck.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I had one prioe to my MDX-1106 trial and one before IL-2. It is a relief, isn't it?

mark11
Posts: 1
Joined: Dec 2013

a_oaklee

I was stage 4 also found this last may .mass on left kidney my primary suggested pet scan for bones also a brain scan ,my surgeon also wanted full upper torso Ct 

Just to establish where everything has set in .Bones showed some spots before surgery ,Brain scan was clean , Had my surgery in June 2013 left kidney and adrenal gland also 

lymphnodes in that area ,did another set of scans in october and november scans showed bones were clear and lymphnodes in my upper chest havent changed . will do more scans after ive been on votrient a while started Votrient in Sept. 

Mark

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Mark,

 

Read your bio. Glad to see such a positive attitude even with a little extra baggage to start. When I started my journey almost 12 tears ago there was little positive going on where one was diagnosed with Stage 4. Each year that has changed for the better and there are many here living with and shaking off those pesky mets.  May you keep us informed of your progress for many years.

 

Icemantoo

a_oaklee
Posts: 446
Joined: Nov 2013

It just never fails to amaze me how different the treatment is from patient to patient with this disease.  Whether it be the medications given or the tests performed.  One would think it would be "routine and customary" pathway for managing and monitoring RCC patients at a certain stage.  Especially patients who go to the large medical centers with RCC oncology specialists.  That some uniformity would exist. 

I do appreciate all the responses.  My husband has never had a "full body bone scan"...or a "full body scan" to my knowledge, and I have all the reports.  Nothing above his thyroid has ever been mentioned in a report.  My husband was first diagnosed at Stage 4 with mets to bones.  He had a preoperative PET/CT which found the multiple bone mets.  His kidney tumor was not operated on for 1 year due to the mets in the bones.  I've posted about this before.  His PET/CT's are done every 3 months and only mention thyroid to hip. 

I think I may ask the doctor about a full body bone scan or full body scan.  It's just that I don't like feeling like an "alarmist" with my husband.  I'm the "caregiver" person, and sometimes I feel inadequate in knowing what I should say and what is beneficial and what is not.  Lots of self-doubt.  I really do not want to add to his stress or worry.  I want to be the person who makes him feel better. 

Thank you all very much for helping me. 

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

I don't think you are being "alarmist" in the least.  You are being proactive.

A full body nuclear bone scan should be standard procedure for anyone who has bone mets anywhere in their body.  It should be done every 6 months or so.  This is not a CT scan and it is not a PET scan.  They are separate kinds of scans.

The bone scan only looks at the skeleton and skull so it will not tell you anything about brain mets.  For that you need to do an MRI of the brain.  It takes about 30 minutes.  They generally are not routinely done unless or until there is a symptom that might suggest the presence of brain mets.  But if you are concerned you have every reason to suggest this to your oncologist and have one performed on your husband.

I assume that your husband is taking either Xgeva or Zometa to help combat those bone mets, correct?  That is the very first order of business.

a_oaklee
Posts: 446
Joined: Nov 2013

Thankyou Nano for explaining the difference in the tests to me.  Now I am left wondering why it isn't being ordered.  I will ask.  And yes, he has taken Xgeva since the beginning of this diagnosis.  Thankyou for mentioning that.  Anyone with bone mets, definitely needs one of those drugs you mentioned. 

Srashedb
Posts: 482
Joined: Dec 2013

my husband had multiple MRIs and cat scans as well as a body scan; he had the full body before the surgery and another in late November at his first post-treatment appointment.

the theory, I believe, is to have a full picture of the extent since treatment could be useless in some very advanced cases.

brain scans for kidney cancer as I recall, were done as pet scans since the FSG (I think that's what it's called) uptake is difficult. 

This is a large university hospital (UCSF).

sarah

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

When I started this a little over a year ago, and they thought I was Stage 1 and then Stage 3, and then there was a spot on my femur that they wanted to make sure wasn't cancer, what my doctor said (this is a leading RCC oncologist), was that he wanted to do a nuclear bone scan to make sure there were no bone mets. If there had been bone mets, he said he would want to do an MRI of my brain for further staging information and to get a baseline for treatment moving forward.

The spot on my femur turned out to be not cancerous (as determined by a second reading of my CT scan and the nuclear bone scan), and I ended up not needing the MRI of the brain.

I didn't go to medical school. Just relaying what my oncologist said.

Best wishes,

Todd

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

BTW, I heard Dr. Figlin speak last year and he was discussing the probability of brain mets, and (hopefully I'm getting this correct) he said that brain mets are not as common as most kidney cancer patients think they are. He said that only 5% of stage 4 kidney cancer patients will get mets to the brain. Ever. Least that was my understanding. This information actually made me feel better. I hope I got the information correct, and I hope it might give some comfort to someone. It really did me. I had been under the assumption that when the disease advanced, it always eventually ended up in mets to the brain. So I was glad to hear that was not at all true.

As I write this, I find myself thinking how crazy I am. Mets are bad no matter where they are. It's crazy when you start trying to split hairs about which mets are better than which other mets.

I hope I haven't offended or worried anyone. I feel like I should go to bed and stop running at the fingers.

Todd

rchalmer's picture
rchalmer
Posts: 15
Joined: Jan 2014

Oaklee,

 

I've been dealing with non stop pervasive and painful headaches for 2 weeks straight. I've passed out twice for hours at a time. I'm scheduled for a head CT w/contrast friday. I'm 2 yrs out from my partial Neph surgery... no recurrance as of right now although I'm awaiting CT results from my most recent screening ( Monday of this week) 

I'll let you know how it goes..

 

-Ross

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