Brain mets but no systemic disease

forher · 04-21-2015, 09:59 PM

Hi everyone,
I have a question about metastasis. Does anyone have brain mets without systemic disease? This is my case and I find it unusual and hard to understand why I have mets in my brain but not anywhere else? Isn't it logical to assume that mets would have to travel through my body before reaching my brain? Do you think my systemic mets just has not been discovered yet via scans?

Lani · 04-22-2015, 12:29 AM

It does happen (although it is relatively rare) that her2+ breast cancer metastasizes to the brain without having gross(macro) metastases elsewhere.

Her2+ breast cancer has a predilection for metastasis to the brain. It seems it is even more prone to metastasize to the brain when treated with herceptin (it was thought that it was only that patients lived longer while on herceptin so they lived long enough to get the brain mets, but mathematically it seems more than that)

Have you been staged with a PET-CT to determine if there are any other mets?

Lauriesh · 04-22-2015, 06:15 AM

I think having stage 4 cancer means it is systemic.
It had to travel through your body to get to your brain,so I guess I don't see it as much different than having liver or lung mets.
I had cancer only in my liver, no where else. We have to assume that there are cancer cells floating around everywhere in our body and we don't know where they will start growing next.

StephN · 04-22-2015, 12:30 PM

I had two brain mets show up after being stage 4, but over two years NED. So, that means some micromets had to have lodged in my brain and were finally able to grow over that "NED" period.

The only way the mets changed any of my blood work was by elevating my CEA number. I had NO symptoms.

Hope you will have successful treatment, and have no more brain mets pop up. I have not had anymore tumors show in my head or anyplace else since 2006.

forher · 04-22-2015, 04:25 PM

Hi Lani,
I have no systemic disease (I hope I am using the term correctly) according to all my PET/CT. I just wonder if there is anyone else out there like me. I am still stage IV and it might not make any difference, but I still wonder if I have small mets in my body that has not been detected yet. I had neoadjuvant therapy and then a BMX. According to my onc and the reports, all the cancer is gone (except for brain metastases which showed up about 15 months after I was initially diagnosed).
I am now even more concerned after reading your post: '\"It seems it is even more prone to metastasize to the brain when treated with herceptin (it was thought that it was only that patients lived longer while on herceptin so they lived long enough to get the brain mets, but mathematically it seems more than that)"
I am on Herceptin only now, and my onc doesn't even feel like I should be getting it (I restarted in Jan 2015). I told her I wanted to control my sytemic disease in case it was there. Her response was, "You don't have sytsemic disease." I'm so confused. Am I over-treating?
I really appreciate the replies and a chance to think out loud here.

Mtngrl · 05-26-2015, 04:19 PM

If you are tolerating the Herceptin I think you should stay on it for awhile, and maybe add a small molecule drug like Tykerb, that might pass the blood-brain barrier.

suzan w · 05-26-2015, 06:24 PM

One thing for sure, cancer does not play by the rules. Even if we "think" we might find some aspects of our dis-ease that does not make sense, cancer cells are always trying to morph into something else...sneaky little bastards...

Lani · 05-27-2015, 10:24 AM

Breast cancer is felt to have metastasized long before it is diagnosable. The micrometastases are too small to be detected by PET or MRI OR CT. A safe-havene where they sleep like sleeping beauties awaiting being "kissed" and woken by my angiogenic factors is the bone marrow.

I have opined endlessly on this forum about testing bone marrow for micrometastasis before and after treatments and continue testing (and adding/changing treatments until they dissappear). They appear to be cancer stem cells waiting to cause metametastases. They evade chemotherapy by being dormant (non dividing) just like mold in your shower evades the bleach and comes back when the moisture returns.

Those treatments that kill "sleeping" cancer stem cells as well as primary tumor cells and or active macrometastases should eliminate the cancer ie, 'cure' it

US oncologists tend not to be hematologists and often rarely perform bone marrow aspirations/biopsies and rationalize that "patients do not like them"
--well patients do not like receiving chemo other, but that doesn't stop them from recommending it.

A well planned trial is necessary to prove this once and for all. I tried to convince the head of the I-SPY trial to add it to their tests, then tried to get
Susan Love involved. In the meantime, she (Dr. Love) developed leukemia and
had bone marrow tests herself and I understand she will now will be recommending bone marrow testing be added to the I-spy trials.

TRIALS with bone marrow testing for DTCs (disseminated tumor cells) has long been done in Germany and indicate those with micromets in the bone marrow are at much higher risk of becoming Stage IV (macrometastasis)

I recommmend the articles of Klaus Pantel for those interested

In the US we have been trying to get the same info from circulating tumor cells--those may or may not represent cells which might "cause trouble" as they are not "sleeping" in a niche and are reachable by conventional "systemic" treatments and may not survive if they don't settle down into the right microrenvironment.

so "forher' your brain micromets might have been there for years before you were diagnosed and treated and/or hiding in your bone marrow, then awakened and traveled to your brain where the chemo and herceptin could not get to.

Off to ASCO for me now--will fill you in on latest and greatest later...

lkc Gumby · 05-27-2015, 02:15 PM

Lani, you are brilliant and are absolutely correct about the BM micro.metastasis. this is pretty well accepted within the medical oncology community and explained to me years ago by a close friend, a medical oncologist.
The question is why is this information not provided to BC patients.
... would create more fear in the patients? however, I believe its much more then that. hate to think it's the cost factor.....

Lani · 05-27-2015, 04:40 PM

worse, I THINK IT IS A MATTER OF PHYSICIAN "TURF" (WHICH ULTIMATELY RELATES TO ECONOMICS) and unwillingness to refer to someone else something they are not or no longer familiar with or good at.

I really hate to think that, but it comes from discussing this with many at AACR, ASCO and other meetings as well as with old college friends who are medical oncologists.

Most/best of the bone marrow studies done on bc in the US were done by a surgeon,not a medical oncologist, DR. ANTHONY LUCCI of MD Anderson (pubmed them)

Lani · 05-27-2015, 04:48 PM

I don't go with the fear factor--in fact I think it would keep many many more from overtreatment and save money and healthy productive lives.

More patients are in fear if they don't know if the treatment they had worked
and if it was the right treatment.

If movies did not confuse lumbar punctures, bone marrow biopsies and being put on the rack in movies about Elizabethan England, things would be much better.

A 80 year old neighbor of mine with no diseases volunteered for $100 to get a bone marrow for a study and thought the discomfort a 4 out of 10 for about 2 seconds and then a 1 or 2 out of 10 soreness if she leaned the biopsy site back into a hard seat for 2-3 days(she weights about 90 lbs and has no "upholstery").

Anything that helps identify ONLY those that need the treatment, the best/least treatment for them cannot help to save money-- but pharma only wants to develop expensive drugs for a sufficiently large population or orphan drugs where unlimited profits and lengthy patent rights are ensured, it seems.

Mtngrl · 05-27-2015, 07:20 PM

"If movies did not confuse lumbar punctures, bone marrow biopsies and being put on the rack in movies about Elizabethan England, things would be much better."

So right. So funny. So pathetic.

I love you, Lani.

forher · 05-27-2015, 09:14 PM

Lani! Thank you so much for posting! You are a wealth of knowledge and analogies (love them). So scary that any time we can awaken "the sleeping giant" and mets can show up.

Amy- I am considering Tykerb. Just waiting on my next test result. So far , I'm stable since Jan so I don't really feel like jumping into chemo. Ick! I have a bone scan coming up, too.
I actually feel fine (relative term). No headaches. Just post surgery and rads pain, oh, and that darn lymphedema. Do I "wait and see"? Or should I bug my onc about testing my bone marrow? How is bone marrow cancer treated if they are unreachable with systemic treatment? Sorry, feeling a little confused.