Recommended: regular brain MRIs for all HER2+ patients

JessicaV · 01-07-2015, 04:27 PM

Hi, reading about Christine, the lovely founder of this group, made me aware of the effort she and others put into creating stress relievers in the shape of brains, printed with the words that we should have regular MRIs for brain mets. Can anyone tell me more about this campaign, and the info/research that inspired it, and what regular MRIs are: annual or more or less often?
I have sensed the need for this. I have not/will not have had any checks on my brain, before, during or after treatment, and have now read enough to know brain mets are a significant risk for HER2+, need to be caught as early as possible, and are often symptomless or overlooked.
My oncologist says if I have any serious persistent symptoms, she will immediately authorise an MRI. She says that she sees a lot of people who get so stressed about having tests she errs on the side of not doing any more tests than she can really justify, and that research says these tests do not increase survival rates. I find tests comforting and do not stress out over them, so am diff to the norm, and want to know early if possible, and to be able to relax otherwise knowing all is probably well.
I would like the info to take to her so I can have these regular MRIs for brain mets myself.
Thanks in anticipation

Lauriesh · 01-07-2015, 05:24 PM

I think it is going to be very hard to convince your onc to give you MRI 's without symptoms.
I have stage 4, and my onc won't order brain MRI's unless I have symptoms . And from reading on here and other sites, I have seen very few stage 4 her2+ patients who routinely get brain MRI 's ( unless they already have brain mets)
I have 1 -2 brain mri's a year because I tell my onc I have symptoms- headaches, dizziness, nausea, etc. I am sure by now he knows I am probably making up some of my symptoms, but as long as he can write something down to submit to the ins, he seems fine with it.
Instead of trying to convince him , I would occasionally tell him your having headaches, etc and insist you want it checked out.

Laurie

JessicaV · 01-07-2015, 07:12 PM

Hi Laurie, thanks for such sensible practical advice

Dakini52 · 01-07-2015, 07:34 PM

I receive brain MRI's every 6 months and have not been stage IV yet or had brain mets. Since my recurrence my onc has made them standard protocol for me. I'm confused as to why there is such a difference in how oncs vary so much in their interpretation of the protocol. Very confusing. I just don't want to wait for symptoms before I get an MRI.

Dakini52 · 01-07-2015, 07:35 PM

I do really like Laurish's advice though. Take the matter into your own hands and get what you feel comfortable with. :-)

embur102 · 01-13-2015, 03:17 PM

I had no symptoms of having brain mets before having a seizure, and had not had a MRI.

I don't know if finding it earlier would have made much difference, in treatment or outcome. It has to be a certain size before it will even show up on a scan, and a certain size before it can be treated.

Now, tho, I want to scan my brain every week

DizzyDo · 01-13-2015, 06:59 PM

I didn't have symptoms before the seizure either. But It does scare me that it could have happened when I was driving or something. I was at work and my coworkers told me I started batting my arm, fell over and started seizing. There are EMTs where I work, one was in our meeting. They took me to the site doctor and ambulance to hospital. I don't remember anything until I was going down the road to the hospital. I had an MRI in Feb 2014 it was clean. So I was lucky on the timing I guess, but it could have been bad if the situation was different. Doc told me I will have them every 3 to 6 months now....

Lauriesh I like your approach, I should have done that! Doc told me vertigo and dizziness are also common warning signs - try those symptoms as well

.

Love u guys!

annettchen · 01-14-2015, 01:56 PM

I'm stage IV bone only at this point, and in Canada. My Onc told me in a somehwat "veiled" way that "as per protocol" she would not send me in for brain MRIs. However, if I felt any possible symptoms, she would definitely have them checked out with an MRI sooner rather than later. So in other words: if I had a headache (or the like) I should tell her sooner rather than later, and that would trigger her sending me to an MRI to get it checked out.

I have also heard that from a treatment perspective it does not make much of a difference when they are found. I disagree, though, for 2 reasons: friend of mine recently died from brain and bone marrow / spine mets, nad it all happened way to quickly. She was HR+, HER2-, no one suspected brain mets, as it was rather unlikely in her case. The mild symptoms she had were misdiagnosed until the point in time where it was really too late to help her. Second reason: I would argue that there's a likelyhood that if found early, you can often still use gamma knife, not WBRT. I personally would prefer Gamma Knife over WBRT, if I had a choice.
But that's just my five cents...

Kim in CA · 01-15-2015, 10:55 AM

Just wanted to add my experience with brain mets and scans.

I think that finding brain mets early is critical in successful treatment.

After reading about the potential for brain mets on this site, I asked my doc for an MRI, which he had no problem ordering for me, since I was already stage IV. The plan was to do annual scans.

Nine months later I asked for another scan, not because of any symptons, but because my hubby was changing jobs, and I was worried about insurance coverage. Turns out I had an 8MM tumor in my right occipital lobe.

My Doc immediately referred me to UCSF, to be evaluated for Gamma Knife. I was indeed a candidate, and almost one month later to the day, I had the procedure.

In that short time the tumor had increased in size by almost 40%. I dread to think how big it may have gotten, or how many, had I not had my scan until my annual date.

As you can see by my signature, I have been free of brain mets ever since. We are currently doing MRI's every 6 months, in the hopes of catching any stragglers that may sneak up.

I know everyone is different, but I am convinced, that catching any cancer earlier, is better than later.

Dakini52 · 01-15-2015, 01:54 PM

I know that MRI's aren't standard protocol but I am at a loss as to why. after my recurrence I received MRI's every 3 months for the first 2 years and then every 6 months since. I am 5 years out and still receive them. Can anyone explain why these are not considered standard protocol since we know that Herceptin and I'm presuming Prejeta cannot cross the blood/brain barrier?

SoCalGal · 01-19-2015, 03:44 PM

I had NO symptoms, but when I got re-staged a year after turning stage4, a tiny stupid met showed up. I think it is beyond reasonable to have an MRI as a baseline. Then to repeat in 6 mos if you are stage 4 especially, makes sense for proactive survival.
This thread has reminded me that I am overdue for my head to be examined!

norkdo · 02-20-2015, 07:26 AM

Excellent info here from all of those who replied to this post! Thanks everybody on here! Question: are there any negative consequences to having one's brain MRI'd? Such as exposing the brain to unnecessary radiation? I, too, in Ontario, Canada, as the Aussies tell us, require headaches to get the MRI, unless I pay $800 in Quebec, ten mins from me, to have one. I am perfectly prepared to fake headaches if it is a good idea. Is it?

JessicaV · 02-21-2015, 01:12 AM

Hi, I saw my surgeon a couple of Thursdays ago with the results of my Mammogram and Ultrasound for my remaining breast, plus physical check on the mastectomy side for recurrences. I get mild headaches often, when I am short on sleep or have sinusitis, or hay fever, or from my Herceptin. So I was open with my doctor that these could be caused by something else. He agreed, and also agreed that an MRI of my head might be wise. Nice to have a baseline of a good brain, esp given the annoying cognitive fatigue I am having, and the knowledge that up to 50% of people with HER2pos mets get brain mets. What helped persuade him was that I came in on Wednesday for my 9am mammogram and ultrasound scans, and was quite convinced it was Thursday, and even argued with the receptionist. "Are you sure?" I asked her. Then felt so stupid!
I was totally surprised though when they found a nodule in my remaining breast, which had shown up in the mammogram last year but not the ultrasound. They wanted to biopsy it, and the receptionist found me a biopsy appointment for that afternoon, and a MRI appointment for Thursday a week later. Had few days worrying about the nodule, so glad to get results on Monday that the nodule was a fibroadenoma. And on Thursday, the MRI showed a good working brain without indications of metastatic breast cancer. This might also be useful if my income protection insurance people start to say perhaps my befuddlement is old-age dementia/Alzheimer's.