Brain Mets - Can we pull the threads together?

chartermom02 · 09-24-2005, 11:41 AM

Hi all,

I read regularly but haven't posted in a while. This is on topic but kind of also off topic.....I'll be 5 years out in early October. Diagnosed with IDC 2cm; Stage I; ER+/PR+; Her 2+++; Grade 3. I was 41 at the time and premenopausal. Had A/C x4; 35 rads; Tamoxifen for 3 years and 10 months and now on Arimidex for the last 10 months or so after undergoing a hysterectomy. My question is about how fiercly I should push for a brain MRI. I have not had one ever and my onc is very apprehensive about ordering any testing unless there are symptoms. Even at the time of diagnosis, I wasn't given any testing - no tumor markers, no CTS, no bone scans, etc. I'm due for my follow up mammo, ultrasound, and for the first time an MRI of the breast in a few weeks and then have my checkup with the onc near the end of October; I really want a brain MRI just in case but I don't think my onc will go along with my wishes. Any suggestions to try to convince him?

Montana · 09-24-2005, 11:46 AM

develop a headache....

StephN · 09-24-2005, 12:00 PM

Al - you asked a question about reliability of these scans to indicate a brain met. What I found out when I asked that question is that brain mets have a distinct look - round in shape, with a regular smooth-looking surface. This is different from how a brain primary would look. Also, if the spot/s are really teeny tiny they will take followup MRI in one month or so to compare with the last to make sure this is what they have.
Most of us have some kind of other tiny spot in our brain area that is visible on a scan or MRI but is NOT cancer. I have one of those little nodules that just stays the same scan after scan - also one in my right lung.

Also, if the spot on the MRI also has some evidence of inflammation or fluid with it, you have another indicator.

Not to worry - these MRIs are very accurate!

Seems the times they have the most trouble is deciding if they are seeing DEAD tissue on followups of larger mets. So far not the case with my big one, but will have another MRI next week, so ...

mamacze · 09-24-2005, 07:33 PM

Patti and Steph,

You have both been a fountain of information; thank you for sharing your experiences. It seems like you have both been dealing with brain mets for eons...how long has it been?

I have another question; my onc encourages me to stay tuned into abnormal symptoms I am having; stating that mets won't typically show in a scan until we feel symptoms. He also says that women who follow their tumor markers and get scanned when the go up; vs women who get scanned only when they feel symptoms; have the same prognosis. This leads me to believe that the focused scans and follow up treatments, should be done when I feel symptoms. Does this philosophy hold true for brain mets as well?

And dear Chartermom02, it sounds like you are worried sick!?! Have you had any scans or indication that you have spread past a stage 1? If it is not in your nodes, it is not likely to have spread to your brain...I would wait and see what this latest round of scans turns up.
Love Kim from CT

09-25-2005, 07:08 AM

Kim, this sounds like what my own onc does and goes by actually!

But, tumor markers are not always accurate...

The CA 27-29 is reliable for me when it comes to mets in my body. It has come back low normal the whole time I've been NED in body, but still have my brain mets active.

Symptomatic vs asymptomatic that is the question!

Arguments can be made for both sides of the answer.

Since the standard of treatment for mets is pallative rather than curative, the goal is to control the effects of the cancer on the body. That is pretty much the bottom line. Though there will be opposition to that statement, some angry most likely.

So, if there are no symptoms ie the cancer is doing 'no harm' so to speak, do we do things to the body that can do more harm? Before actually needed?? Some do. Some demand it. Some oncs will throw everything at you but the kitchen sink......

I've been living with brain mets for three years three weeks ........... that we KNOW of that is. Just as in bc itself where the tumor is said to have started something like 7-10 yrs. prior to discovery, the first brain met could have been there for?? maybe a year or more. Minding it's own business, lol!

I'm going away for awhile to enjoy friends, family and whatever else falls my way. Hope this latest post answers more questions than it raises!

hugsxoxo,
patty

mamacze · 09-25-2005, 07:20 PM

Patty,
So it sounds as if you took the "take your time treating the mets without symptoms" approach ... and for good reason.
You mentioned earlier that you felt good enough to go out and get your pruning done...I know pruning can be rewarding, but is sounds like it is time for your adventure away...enjoy! (and believe me, I will be getting vicarious pleasure at the thought of your fun while I do my pruning this week!)
Love Kim from CT

StephN · 09-25-2005, 09:19 PM

Kim -
I have only been dealing with known brain mets since the first week of January this year.
Just finally getting a little more strength back after the debilitating effects of the steroid anti-inflammitory pills. YECH!

Like Patty, my CA27-29 has been very steady throughout this brain mets episode. I have been having CEA drawn as another check for about 2 years now, so as it edged up late last summer and fall we started checking for the cause. My PET and other scans all came out negative. Turns out my brain tumors were producing the protein that shows on the CEA. Now my CEA is down to .8 and this is a god feeling and cuts my worry down to almost nothing. Good to know what your tumor markers are BEFORE you need them followed for mets. Anyway, my med onc thinks so and I am GLAD!

BTW - Christine Druther also had her CEA checked as a matter of course and this was also an indicator for her brain mets when that marker rose above normal.

Glad to help with your questions. Without this site I would have been rather lost myself!

mamacze · 09-26-2005, 07:56 PM

Hi Steph,
Ugh! it seems like everyone who takes the steroids has the same blech experience...

the steady increase in your CEA interests me; as it happened to both you and Christine. I have chosen not to have markers drawn as a matter of course; ;but I will share your experience with my onc tomorrow and reconsider having the CEA drawn just to keep an eye out for brain mets. During my last visit, he said I would need to start with brain MRI's. In light of your experience, I will see about a CEA as well.

How long were you on steroids?
Love, Kim from CT