Monitoring: PET and/or Brain MRI and/or Tumor Marker?

BonoboGirrl

Throughout my year of adjuvant therapy (6 rounds TCH followed by one year of H) I've been monitored via tumor marker testing and PET scans (one each six months). I've read that PET does not scan the brain very well, since it uptakes so much glucose to begin with. Every time I ask my onc about monitoring, he just says it's up to me, but noted that he'll run a tumor marker test at each annual appt. He's never once mentioned the option of having a brain MRI. Anyone else have oncs that recommend a brain MRI for HER2 gals? I meet with my onc for my first end-of-treatment visit next week and am thinking of asking to have one brain MRI done before the year is out. Am I being over cautious? How accurate are PET scans and tumor marker tests with regards to monitoring for distant recurrence?

elmcity69

Hi, this is an interesting question.

My onc believes in PET scans yearly, more if there is a problem. Never mentioned a brain MRI. He believes tumor marker tests are "useless" and something for patients to obsess over; the best diagnostic tool is the PET scan.

I guess for my own peace of mind, I leave these issues up to my onc. He's dynamic, smart, and trained at Johns Hopkins; I have total faith in him, and know he would do a brain MRI if he felt it appropriate.

I'm not sure I answered your question, but hope it helps. Why not ask your doc about it?

Janyce

BonoboGirrl

Thanks, Janyce. We're going ahead and doing a brain MRI before or after my next PET scan to make sure everything is clear before removing my port. Onc confirmed that PET scans are not best diagnostic tool for the brain since it is an area that naturally uptakes a lot of glucose. On the Her2support.org boards many women have indicated that their oncs include a brain MRI for HER2 patients. Seems every onc prefers a different method of monitoring. 

chainsawz

I think it is always a great idea to get a baseline brain MRI.  It seems strange that our docs scan all the other parts of our bodies, but don't seem to worry about our brains.  I had brain mets found accidentally with a trial baseline scan in 2009 and since they were so small I didn't have any symptoms and they were easily treated.  I can't imagine how different that scene would be for me if they were allowed to grow unchecked until I had something like a seizure to get an MRI.....sheesh!!   After a certain size the option of cyberknife is no longer available - so earlier is better!! 

I think the old way of thinking was once you got brain mets treatment didn't help the survival rate.  With the technology available today, that just isn't true and it's taking some time for the docs to change the way they think about this.  I'm glad you are being so proactive!  Good luck to you :>

Hopbird

I'd also recommend a brain MRI.  I had brain mets after everything seemed to be fine.  It was found because I had terrible headaches and actually got dizzy and fell.  I had a lot of brain swelling, and that could have been bad.  I had let the headaches go on too long, but had a bad neck and just figured it was that.  I'd gone to get muscle relaxers the day before.  It always bothered me that they didn't check the brain.  I asked the doc about that, and she just said it wasn't usually done....they also said they are seeing more brain mets with HER2+ people...maybe because of other treatments it has long enough to show up?  My guess is that in a few years they'll do brain MRIs...in the meantime, my advice to people now is ask for one. 

elmcity69

ahhh! now i'm wondering. going to take this up again with my doc. i just asked him friday if he does those and he said no, esp. in light of a recent clean PET.

it's hard to push the docs..i believe in being my own best advocate, but don't want to irritate him because he is a) smart b) caring c) good at calming me down!

good food for thought here..thanks ladies

 j

BonoboGirrl

Thank you all for including your input. My MRI and PET are both scheduled for this Friday. I'll stop by and report the results next week. 

elmcity69, the reason brain MRIs are recommended is because PET scans are unreliable for detecting brain METS b/c of the glucose uptake issue. If you're unsure about asking your onc, I suggest visiting the Her2support boards and viewing some of the posts there on this issue and then decide what you are comfortable with.

Based on what I've read, HER2 is a type of BC that tends to metastasize to the brain; different cancers just seem to prefer different sites of the body. I'm glad I've asked for the MRI and am equally glad that, even though it's not something he would usually order, my onc respectfully obliged my request. Like you say, Lisa, it's good to have as a baseline.

MymomMylife

Hello,ladies. I am here for my mom who is also HER2+++ and she is going under brain mets. I personally suggested to push your ONC to get the MRI as MRI doesn't have any side effect as PET and SCANs will and even don't wait for insurance approval . My mom was totally fine and she was just complaning of shoulder pain and MRI was done that just showed rotator cuff injury on her shoulder 3 weeks before she gets numbness in her foot and fingers that made her ONC to order brain MRI and came up with multiple brain tumors but thankfully everything is under control now. Please ask for MRI and don't give up ! I heard that Herceptin cover the body not the brain and Tykerb is the only medicins that cover the brain.Sorry for my bad spelling I know english as my second language. Wish you all the very best.

BonoboGirrl

Just an update: Brain MRI and PET were both clear.

BonoboGirrl

@MymomMylife: Thanks for info regarding your mother. Is she doing well on the Tykerb?

elmcity69

hey gals, thanks for the posts.

i asked my onc, and he doesn't do brain MRIs unless there are sx. he feels adamant a clean PET is good enough; he would do one if i demand it, but really, i don't want that relationship with my doctor. he's the one with 9 years training, including 2 at johns hopkins. he is caring, brilliant, and in the end, he has always been right about other questions i've brought because of stuff posted on these boards (Neratinib, Zometa, radiation worries).

 frankly, half of this issue is my own baggage. i am so sick of screenings: PET scans, MUGAs, MRIs, mammograms. just sick of it all. i'm sailing ahead, declaring myself cancer free, and that's the end of that.

i thank you all, though, for the insights and caring. xoxo

janyce

BonoboGirrl

"declaring myself cancer free, and that's the end of that."

Sounds like a fine plan, elmcity.

 hugs,

anne marie

kathleen1966

I had a PET scan and an MRI at the beginning of my treatment but my oncolgoist will not do these tests now unless I have symptoms.  I would feel much better, getting a PET scan every six months for the first three years and an MRI once a year. I am having a really hard time at the moment, trying to get on with life and ignore every little ache and pain. I have no idea if what I feel I am sometimes feeling is real or in my head or from anxiety and worry about having a recurrence.  It is almost unbearable.

REKoz

Kathleen1966- Just have to say that I hear your anxiety loud and clear! I'm a little over 2 years out so I thought maybe my perspective will help. Looking at your stats, I'm guessing that you are not too far out of chemo and still on Herceptin? If that's the case, you should know that your anxiety is FAR from atypical. Though nothing can compare to the trauma of diagnosis, completing chemo does commonly reintroduce a high level of anxiety. There have been several threads regarding this over the years. Many of us felt like a fish out of water and had ZERO idea how to "move on" and "put it all behind." It's just one of the rougher hoops we all must jump through to settle into an elusive "new normal."  I'm finding it's an ongoing process as sometimes my feelings are still all over the place. But time and just living life as it comes makes the anxiety about it much less severe.

And here's another perspective about testing/scans and your thought that more of that may make you feel less anxious. I have PET's every 6 months to follow a lung nodule found on my first scan. It's most likely scar tissue as it showed no change after 4 scans. Next scan is Tues. and I can't tell you how much I dread it.

For me, the further away I get from active treatment, the harder it is to go for these scans. Already cancelled once..on the morning of.. but must go this time as per insurance "approval time."  This is the first time I am experiencing such "scanxiety" and I think it's because my brain has left the robotic phase of endless treatments and tests. Then, I just did whatever directed to do. Now that I've got a foothold in my "new normal," revisiting the possibility of those horrible unknowns is getting the best of me. Though the chances of an "all clear" are far greater than not, all of the banter going on between my ears makes it difficult to truly accept that. I went for my annual mammo in Sept. '08 feeling the exact same "all clear" confidence and 2 months later, they're taking my breasts!  I KNOW that I would not be entertaining these feelings if I were not facing a scan. So, I guess this is my long winded way of saying that constant monitoring is not without it's drawbacks. If anything, my anxiety level is way higher because of them.

BTW, I lived in "The Burgh" twice for a total of 7 years. Actually, I was in the burbs...east the first 2 years, north for 5. Many of my most beloved friends are there and I have so many great memories of my life there.

Wishing you inner peace a day at a time,

Ellen