Brain mets

[Karen t]

Hi Everyone,

I have never done any online chatting before so please bear with me if I make mistakes.

Just read the info (copied and shown below) and am wondering if any of you have been having diagnostic testing while you are still symptom free? If so, what kind, e.g., MRI, CT?

Am I correct in assuming there is a benefit to early detection of brain mets?

Many thanks,
Karen t

Info copied from part of this website:
30% of all women with metastatic breast cancer will eventually
develop brain tumors. 30% of these women will not experience
symptoms until their tumors are too large to be treated through
non-invasive procedures.

Herceptin and other drugs may keep the primary cancer under
control but do not cross the blood brain barrier. This results in
HER2 positive patients having a higher incidence of brain tumors.

We encourage all metastatic breast cancer patients to request
brain MRI's to be performed on a regular basis. Be familiar with
all of the symptoms and immediately tell your oncologist should
you experience any of them.

[StephN]

Hi Karen -
It has been one of the missions of this website to educate about the possibility and and proliferation of metasteses to the brain as a result of breast cancer.

Unfortunately the brain is one of the favorite places in our bodies the breast cancer will move to. The other two favorites are the liver and lungs, not forgetting the bones. Of all the cancers the three that favor the brain are (in order of most occurrence) melanoma, lung cancer and then breast cancer. Normally we are talking about people who are already stage IV or who have had disease progression. So, the cancer may move to the liver and then to the brain, as happened in my case. Fortunately I have been able to fight it off and currently show no signs of active disease. (A little GOOD news!)

It is not unheard of for the brain to be the first place the cancer goes. This is much less frequent than it going to the brain after another part of the body. For these reasons, we Her2 positive types are pushing for brain screenings.

I am not sure how many women who are still early stage are getting those screenings, but some are. Most of us who have had disease progression get a brain MRI once a year. In my case I had NO symptoms and two tumors. I was able to take care of them with Gamma Knife radiosurgery.

It is alarming to find all this out, but this again is part of the "knowledge is power" theme of this website. If we know about it we are not so shocked and we will take steps to catch it early.

Keep asking your questions, and digest the answers as you can. On this message board you will find women from all walks with many circumstances, but we all try to help each other as best we can.

[Kim in CA]

Hi Karen,


Like Steph, I too have experienced brain mets. Originally diagnosed in 1997, mets to liver in 2001(treated with chemo and surgery), and mets to brain this past July. I had Gamma Knife in August and will be doing follow up MRI next week. I did not have any symptoms either, but had been doing annual MRIs and that is how we found it. I was prepared mentally, that this would probably happen, so I was ready to do battle as soon as we got the news.

Please visit this site often, as there is soooo much to be learned about our type of cancer from the many pioneers who post here.

Also, forgot to mention, I have been on Herceptin continuously since recurrence in 2001.

Best Regards and welcome to the board!

Kim in CA

[Karen t]

Thank you Steph and Kim for responding and sharing your personal information. I was diagnosed with Stage II bc in 02/02 (er- & Her2+), had lumpectomy followed two days later by axillary node dissection, then 4 rounds of AC. In Sept I opted for mastectomy and reconstruction instead of radiation. Recurrence diagnosed in 07/04 (although I had been complaining of pain on sternum, difficulty breathing, etc. to both my onc & primary care who sent me to physical therapy for months). Stage IV, total involvement of sternum & 10 tumors on lungs. Started weekly Herceptin with Navelbine 3 wks on, one wk off. After 6 mos, everything had disappeared except 2 tiny spots on lungs. Two mos later, sternum was swelling again. Had 4 wks rad to sternum in July. CT showed 2 tumors on sternum gone and 3rd one seemed to be repairing (but it is starting to hurt). Also showed 2 new lung tumors so I have just started back on Navelbine again in conjunction w/wkly Herceptin. It seems to me that my 7/05 recurrence had been going on for quite some time and I was just being shuffled around. I am trying to become more proactive w/o being obsessive - how to find balance! I have had one Petscan (my onc wrote "patient insists") but am not sure whether Pet, CT or MRI are better tools. Advice welcome. Thanks again to Steph and Kim - all the best. ^,^

[jener8er]

Hi Karen! I can totally relate to your comment about being pro-active without being obsessive - how do we do that?! My onc told me no brain mri's until symptoms show up. He said it doesn't matter if we find mets today, or a month from now, they will treat it the same. Mets is Mets. So I daily have a little panic attack over some new ache or pain. I guess pain from mets is pretty constant though and does't go away.
Hang in there,
jen

[Lolly]

Hi Karen; Yes, that's the balancing act we all do, "being pro-active without being obsessive". It DOES sound to me as if your concerns were being ignored for too long before your 7/04 dx. You are just going to have to resign yourself to being a pain in the derrierr. To that end, I can share my onc's recommendations for my situation, which has so far not been as complicated as your's:

Annual Brain MRI
Annual PET (from the neck down, to moniter active disease status)
Annual Bone Scan
Routine Chest/Abdominal CT whenever symptoms in that area flare up
Bi-annual ECHO or MUGA for heart function


Have you been on weekly Herceptin since your mets dx?

<3,
Lolly

[Unregistered]

Hi Lolly,

I'm not sure what dx is but I started weekly Herceptin in August 04 the week before starting the 6 mos of Navelbine the first time around. I like your schedule and plan to show it to my onc (and be a pain in the ... since I have already been labeled as the patient who "insists").

Karen t

PS I'm so happy to hear from you!

[Lolly]

Hi Karen, dx is short for diagnosis, sorry! BTW, my onc follows up any abnormalities on the Chest/Abdominal CT with biopsy if possible (easy in my case as my mets are to lymph nodes), or PET to confirm active disease. Hope this helps, and good luck!

<3 Lolly