2 questions

[eric]

Hi All,

I'd love any feedback you can offer on these 2 questions...

* all the posting on this board strongly endorse 6 month brain mri's for her2 patients. While I've been succesfull in getting Caryns Onc to agree to do it at each previous 6 month interval, it has taken a good deal of pressing each and every time. He's a very considerate doctor who is willing to listen to everything but feels strongly that with her tumor markers so good for so long and no symtoms annual scans are called for. Since I want to pick my battles with him am I wrong for letting this inch towards nine months?

* Thankfully Caryn has been NED since 1/05 and both she and I are starting to get more nervous that it's just a matter of time for the cancer to reappear since she's stage 4. I know that more years can go by and new drugs are always coming but I hate the idea of her going onto chemo again. Bottom line is I hate the idea of losing her and even more importantly hate the thought of my kids (14 and 8) being without their mother. Sorry for the negativity but, and this may sound stupid, her tumor marker is at 2.3 when it had consistently been at 1.3. Considering that normal is 0-3, she's still doing well and the medical staff says that that deviation is insignificant, I have to admit that the inching up bothers me. It was 2.3 last month and I really expected it to drop back down this month. Am I being ridiculous?

[Becky]

Dear Eric


As far as brain MRIs - I only get one once per year but I am not Stage 4. That was a battle onto itself. If I were Stage 4, I would insist on a brain MRI every 6 months. My rationale for getting one for myself (and it kept my onc quiet over ever other one I've asked for is- my brain is who I am. Period. Not my breasts, not my liver, not my arms - My brain is me). And Caryn's brain is who she is. Protect it as much as you can.

As far as the markers are concerned, if hers never change much, watch it and get retested often. Mine are up and down within a range all the time. If they ever went higher than the highest high, I would get it redone (and I have). I still believe its easier to topple a giant who is just getting up than one who has completely risen and is standing at full height.

[rinaina]

I have never had a brain mri or pt/ct scan. Should I be demanding it? My diagnosis is below. My onc who is a true pioneer and genius when it comes to bc and so highly respected by medical peers throughout Chicago, doesn't take them routinely in cases like mine. I am concerned cause it seems like everyone on this forum gets scans and mri's.

[Sherryg683]

I have MRI's done every 4 to 6 months, although I 've only had 2, I've had a couple of CT's. I have terrible headaches and that is how I get them to do them with no problem. Also my Oncologist is great about giving me what I want, he jokingly calls me "the crazy brain lady", but with brain mets it's a big advantage to catch them early if they come. I have been NED since April 06 and I know and sympathize with your fears, go through it all the time. Just tell you oncologist that you want and expect it to be done every 6 months, it really is no trouble for them, all they do is type in an order and that takes all of 10 seconds and if it give you peace of mind, it's well worth it...sherryg683

[Chelee]

Myself being a stage III'er with positive nodes...I feel better staying on top of things and having my brain MRI every 6 months. My onc just tried to push mine up further away this time...but I told her I was not comfortable putting it off. I told her I wanted it on schedule for MY peace of mind. This way when I get headaches I don't have to worry as much whats causing it.

If God forbid something did spread...I rather have it found asap. I sleep easier getting my scans. But everyone is different...its what your comfortable with. These decisions aren't always easy.

Chelee

[tousled1]

I get an MRI every six months and a PET/CT scan every 3 months. In addition I get the Serum HER2 test every 12 weeks. If Caryn is ER/PR negative I would suggest that she get the Serum HER2 test. It is supposed to be more reliable than tumor marker tests.

[Marlys]

Eric,
Interestingly enough there is another thread titled "2 Questions" (that I hope I have given the link to here) that also addresses the issue of scans etc. I do believe there are probably many of us whose oncologists do not scan, test etc. unless there are symptoms. I am comfortable with this but I am stage 1. If I were higher I would probably feel differently.
Best wishes to you & Caryn,
Marlys
http://her2support.org/vbulletin/showthread.php?t=25791

[Barbara H.]

My necrosis or tumor grew from 1cm to 3cm in 3 months. I am having surgery this Thursday. I had virtually no symptoms. I was NED from 8/04 to 3/06 from Herceptin alone. I had extensive lung, lymph, skin, liver (currently NED), and this current brain issue which resolved for 1 1/2 years and came back as necrosis a year ago. Since March of last year I developed minimal bone mets and have been dealing with them. My tumor markers just rose to 2.7 and for me that is significant. Good luck, but I think it is important to scan twice a year for brain mets when you are stage 4, or have symptoms.
Best wishes,
Barbara H.
P.S. I am active and teach third grade so your wife can live with this for a long time. If your markers are low, scanning is less important, but MRI's need to be done for stage 4 patients.

[pattyz]

Eric,

In the past four plus years of brain mets, my tumor markers are always in the low normal range, using the CA27-29. I think Steph? mentioned that hers is elevated, but a different test/marker.

My tm was way over 300 when first dx'd with mets back in mid 2002. That was mets to mediastinal nodes, spot on lung and pelvis. And then brain. However, after NED in body ever since, the CA27-29 is as I said: normal.... and I currently have 8 brain mets that I've been living with, treating, for over 18 months. Same with my first brain recurrance.

So, once dx'd with mets, I do NOT think it's out of line for us Her2+++'s to get brain MRi's every 6 mos.!

And: Once dx'd with brain mets, I have learned that it is not an immediate death sentence. Many fears and terrors, yes. But doable, too.

Very best wishes to you, your wife and children,
pattyz

[Barbara]

Hi:

This is an interesting subject. I am stage 2B and I request a brain MRI yearly. I would love to have it every six months and would if I was Stage IV. My oncologist says that the CA 27-29 is not very reliable for brain mets.

Barbara

[mamacze]

Hi Eric,
3 or 4 weeks ago I went to a day long session in NYC at Sloan, featuruing Dr. Hudis and Larry Norton as well as speakers from NIH, NCI. Several times they spoke of the noticable increase in mets to the brain in women with the her 2 type of brain cancer who are on Herceptin. I get a brain MRI every six months...I think this is something we need to stay on top of. How is Lisa doing?
Kim from CT

[Marlys]

This is a link to a study which sounds like what Mamacze mentions in the previous post. It states that the brain metastasis occured in patients with "metastatic breast cancer". Marlys
http://clincancerres.aacrjournals.or.../9/15/5435.pdf
This is a link about improved survival rates.
http://www.jco.org/cgi/content/full/23/9/2114

[AlaskaAngel]

Even though Stage I can become Stage IV anytime, I don't feel brain MRI is needed if there are no symptoms and markers and other imaging and labs are clear.

I did have ordinary vertigo and some abnormal LFTs and so had a brain MRI at one point even though all other imaging was fine.

But even if everything was entirely clear for me and I was staged higher, I would want it checked out.... maybe not as frequently for a Stage II as a Stage III, but still, more often.

So when reading other's posts on whether to have the MRI or not I think what stage they are really does make a difference.

AlaskaAngel