Question?

Pray · 08-10-2012, 10:39 PM

When dx I had surgery first and then had a pet scan so we would have a base line. (it was neg.) then I had chemo, rad. and am almost 3 yrs out (in Nov.) There is no need to have another pet scan is there?

Thank you for any input!

NEDenise · 08-11-2012, 03:18 AM

Hey Girl!
Just my humble opinion...
Given with huge doses of love and concern...
No vast medical knowledge...
But some very real first-hand experience...
I think you're okay on the PET scan front...

BUT PLEASE, PLEASE...for me, if for no other reason...insist on an MRI of your brain. It's completely painless, and as Lani just posted...

Almost 40% of node positive, stage 3, HER2 women (that's you and me Nancy!) end up with brain mets, after successful treatment with Herceptin.

The cancer beasties have nowhere else to hide, so they go off to our brains...where Herceptin can't get them..it's too big to get into our brains! Until a post-treatment MRI, or concurrent treatment with Tykerb AND Herceptin becomes "standard of care" (and it WILL become standard of care...it HAS to) ...we have to be pro-active...and INSIST.

Nancy, and all my other node-positive friends out there...you have absolutely NOTHING to lose by insisting on the MRI...and so much to lose, if you don't catch brain mets early (God forbid!).

Again...JMHO...sent with TONS of love...
Denise

JennyB · 08-11-2012, 05:53 AM

Denise I read the figure as nearly 40% of those that do metastasize rather than of those diagnosed? I hope that figure is correct!!! Maybe it is wishful thinking on my part?

Jenny

tricia keegan · 08-11-2012, 03:39 PM

My Onc usually just gives scans if there's pain or symptoms but having read Denise and Lani's posts I'm going to ask about a brain MRI when I next see her

NEDenise · 08-11-2012, 03:42 PM

Jenny,
I just reread Lani's original post, and the update she added later. And...truthfully...I'm not sure what the exact answer is...

I am no expert...that's for sure!

but I usually go with...
Better safe than sorry...soooo...I'd still ask for the MRI...I'd even feel okay lying about symptoms in order to get it!

Denise

JennyB · 08-11-2012, 04:46 PM

I hear you Denise and I will be trying to get one in Sept when I see my new Onc. I do worry that I scan first think later sometimes but on this one an MRI is a no brainer!!

Jenny

LeahM · 08-11-2012, 05:47 PM

OK. I'm stage 2 but still worry about this. No PET ever done. And i have expanders which means no MRI until they come out. Which won't be till about 6 months after rads. And rads won't start till Nov so expanders will be in till at least next June.

So what do stage 2 expander folks do??

hutchibk · 08-11-2012, 09:40 PM

I had a baseline PET when I finished chemo... about 9 months after I completed the very first chemo. I was stage 2B. I was too early, though, to get Herceptin, so I did not get Herceptin until I recurred 14 months later.

I have never been a stranger to PETs... have had about 6 of them over time, and my onc has used them when he needed to, to find out what is going on. He is very, very thorough. I actually thank goodness for them (especially the baseline to start with) as I believe they have extended my life... (7 years as a stage IV survivor).

I am not about to tell you what to do, but I did a PET and a brain MRI within the first couple of years after chemo.

Lani · 08-11-2012, 10:37 PM

Spent 45 mintues composing and although signed in had my post rejected and lost. Then tried again for another 10 minutes , ditto

Here is my last attempt with what I copied and pasted into an email the first time (I have had lots of bad experiences with this here and it is one of the reasons I don't reply)

Unedited prior version previously rejected by me but not worth editing:
I think you misinterpreted both me and the abstract

Very very few her2+ patients recurred in their REAL WORLD non-clinical trial study especially compared to the numbers who recurred without benefit of herceptin treatment

Upon reading the article only about 29% of those who did not get herceptin did not get chemo either, however (I guess British Columbia had very different guidelines than the US during that period)

What was of concern was the percentage of those FEW who did recur who recurred in the CNS first. Most oncologists believe (or have quoted time and time again at conferences, discussions associated with conferences, etc) that it is extremely unlikely for the brain to be the first site of presentation of metastasis in brain cancer.

Well it looks like that is not true for her2+ breast cancer and certainly NOT for her2+ breast cancer treated with herceptin where it was in this combined retrospective study in British Columbia about 40% of those who metastasized first metastasized to their brain.

Even if that is 40% of a small number of patients it is patients whose fate can be easily
improved upon by catching it early when it can be treated with SRS. There are some on this board whom oncologists would deem cured of her2+ breast cancer brain mets (our founder, Christine, Steph and others) There should be a great deal of emphasis in looking at other REAL WORLD studies to see if they confirm this high rate of CNS as first site of her2+ breast cancer metastasis. There should also be studies to try to determine biomarkers in the blood indicating i a reasonable suspicion that bc has spread, if not indicative of brain mets themselves, as they would probably have to brain MRI 100 her2+ breast cancer patients many times (noone knows how often it need be done) before finding 1-2 who might have a positive finding and need treatment.

The "old" philosophy of waiting for bones to break, patients to have loss of vision or seizures or have trouble breathing rather than looking for early signs of recurrence when there might be some who are curable (oligometastatic bone, perhaps some oligometastatic small brain mets, oligometastatic liver involvement with surgical or embolic therapy, etc stands in the way of our discovering if there is a subclass or subclasses of patients whose course can be meaningfully altered by earlier diagnosis of metastases. Sticking to the old dictum not to look for metastases as it will not change the fact that the average survival of Stage IV patients is 2 years totally ignores the progress made in dividing out subtypes of breast cancer and treating them differently and in so doing changing the natural history of the disease in those patients. By not attempting to divide out the subtypes where early diagnosis might make a difference, they may be unnecessarily dooming some patients and of meaningful longer lives with good quality of life and they may also be obscuring the discovery of better treatments.

Down with nihilism--but don't drain the treasury performing the wrong tests on those unlikely to benefit either.

The I-Spy trial is looking for biomarkers to help decide who will and will not benefit from which tests and treatments. Some reports based on it are becoming available. It can't be too soon.

Off the soapbox

JennyB · 08-11-2012, 11:01 PM

Thank you as ever Lani for taking the time to clarify I appreciate all you do for this site immensely.

Jenny

Ellie F · 08-12-2012, 04:40 AM

Lani
Thank you so much for all the time and effort on our behalf.
Ellie

LeahM · 08-12-2012, 06:13 AM

Thank you Lani for all this info...You really help me to better understand what I am going thru and should be doing.

All you ladies are so wonderful!
Leah

tricia keegan · 08-12-2012, 06:21 AM

Thank you from me too Lani!

NEDenise · 08-12-2012, 08:58 AM

Well said, Lani! (as ever!)
Thanks for clarifying!
Denise

Rolepaul · 08-12-2012, 10:50 AM

I agree with Lani for the most part. We need a good tumor marker test and the ones that exist are not quite there. I disagree with Lani on the fact that testing too many for Brain/spine nerve involvement is not helping. To say that 1 or 2 out of a hundred will be all that is found is something I disagree with, but I am in the minority. Until additional studies state how often BC Her+ patients get CNS mets, and there is a study to note how many deaths occur from this outcome, nobody can say who is right. I talk to some of the leading researchers and CNS involvement is likely 30% of the time for mets. And mets are very low in the first two years if Herceptin and chemo are used initially. Five to eight years out, the studies are just coming in and the data being analyzed. Until this data shows very few women getting CNS involvement, I will state my opinion that if you have three or more positive nodes are they are HER+, you need to look at brain MRI scans at years 2, 4, and 6. This reduces the patient level to something that is supportable with the current system. The next question is what is the tumor size where SRS is going to be effective, what other treatments work. The difference is that my patient of one (Nina my wife) missed the odds on not getting any mets, missed the odds on successful SRS and oral chem, and is beating the odds on spine involvement. Lani is right that the odds favor no involvement, but I bought flood insurance for a home that had not see high water for 45 years. The consequences of not getting a CNS diagnosis early are too severe to ignore.

carlatte7 · 08-12-2012, 07:58 PM

asking my onco tomorrow...only had 1 + node out of 14, but also have had migraines for 26 years. I was always afraid of not knowing I was having a stroke, now I worry about brain mets.

Pray · 08-12-2012, 08:27 PM

Thank you Lani! Your amazing! Thank you too Denise and Rolepaul and everyone else here for responding. Priceless!

Denise, I did have an mri at least 8 months ago (ned). My migraine meds stopped working and they started to come more frequently.

I see my onc. in sept. and will discuss then. I go every three months now and I always seem to think of a good question after I have seen him.

Thanks again everyone I really like this site a lot! I am very thankfull of all the knowledge and Support!

Lani · 08-12-2012, 10:25 PM

perhaps I did not express myself well (third time trying to poat it and all) or maybe Rolepaul misinterpreted me

I had no problem with them getting brain MRIs if only 1 or 2 in 100 found a tumor that could be treated and change the course/ time course of the disease. I put in x times which is the problem-- it is unknown how many times/how often you would have to do MRI scans to pick up the tumors in time to have meaningful treatment. Would one need scans once a year, twice a year, every month?? Multiplying 1 to 2 in 100 by how many times the test needed to be done might result in one positive test for every 10000scans performed if tests were performed often enough(say 50 scans) Noone knows at present how frequently they need to be done to catch things in time.

. That is what I see the problem is and why we need a test which more people can access (worldwide, the minority of people have access to MRI testing) , can be repeated frequently if it is found that is needed, and hopefully whose cost allows such frequent testing. I do not believe a value can be placed on human life so my problem is not with the cost, but with how often it need be done and making the test accessible to as many as possible.

Rolepaul · 08-13-2012, 06:18 AM

Lani,
I agree on a test using a blood sample, urine sample, or even a spinal fluid sample would be great. We saw markers and cells in the blood and CFS for Nina (and we saw them clear in the tests as well), so we know that there is something on the horizon. And I mean in the next two or three years. The brain MRI every two years is just to get those currently with disease to that point. The three node concept is a good starting point until these tests get in place. I was on the first PSA five minute test kit manufacturing team. I know what it takes to get a test to be widely accepted. We are doing CPR on a patient that has had a heart attack, trying to keep them alive until they get to the hospital coronary care specialist. I plan on keeping pushing until something better can be put in place, and than I will support that. We could run protein and glucose on CFS samples for at risk women and that would keep us from doing unneeded MRI scans or as a backup for not having MRI scans available. Tests are under $50 and pulling a CNS sample can be done by a good RN. But will it detect the lesions under 2 cm that it needs to? I can give lots of reasons why we did the course for Nina, and the cost was financially very high. I will tell you that Nina's case opened my eyes to this matter and I would never have gotten to this point without her disease occurring. At the same time, it has become personal and I think I have a good background to get direction for progress in diagnosis and treatment going. I would love to have the "Magic Bullet" of the mid-1980s Monoclonal Antibody go from everywhere but the CNS, to now include the CNS. CNS HER+ involvement does not need to be an end of life situation as the many participants here can tell you. Research will help those in the future, I want to help those that find out they have the disease now.