If you don't live in USA ....Please check.

[kiwigirl]

Hi All

In the USA you get everything checked elsewhere you don't.

I have brain mets i went to four docs and eventually i had a CT.

When i spoke to my oncologist he said to me they do not routinely check the head and they don't treat the head when given adjunitive treatment and Her2 is known to go to the brain!!! I probably had these mets from day one.

Now they are hard to treat and it could have been avoided with out such side effects.

If you have high node involvement get a full MRI, PET scan as these will pick up tiny specks. a PET is new to NZ and cost a fortune but worth every cent.

So to all my foreign sisters please CHECK!!! before you get symptoms.

It is easier to treat.



If you have high

[StephN]

Hey Jaquie -
Did you NOT have a brain MRI when screening for the U of W vaccine trial? Seems to me that is part of the screening - or not.

Here we need to push for a brain screen by "developing" some symptom if we don't really have any. This is necessary for the insurance to pay for it.

However, brain screening is part of qualification for every clinical trial that I know of for advanced disease.

I really would be surprised if your mets were there from "day one" as that is not usually the case. Unless a person has not had the proper diagnosis and waited for more symptoms before someone decided to do the right tests for breast cancer. That happened to CourtneyL. Because she is young, BC was not seriously considered.

[kiwigirl]

Hi Steph

No the UW did not ask for a brain scan they got all the notes from my onc here and just went by that.

At no stage did anyone ever suggest a brain scan otherwise i would have done it.

The number i have would indicate thay have been there a long time and i did have very high nodes involved 16 out 17.

I have been told that they could have been there early but just did not check. It has been 16months now since i was first diagnosed with BC.

I've been told that it is 90% sure Her2 and is following the path it tends to go.

I'm very pleased i did the vaccine and i would encourage others to go on the trial as well.

It would seem you may have the same problem with brain scans. Our insurance will only pay for at least one scan but it depends on what insurance you get.

I did not know that this BC went to the brain otherwise i would have pushed for a scan.I can't change my past but i hope others will help themselves.

Regards Jacqui

[Mel3]

I am scheduled to start the vaccine trial later this month and they did not request a brain MRI. When I saw your diagnosis, I asked my oncologist if I could have a scan. I have had sinus headaches, but that's not too unusual for me. I'm so thankful my doctor ordered it for me. I had the MRI yesterday and will have the results by Monday, hopefully. You've been in my thoughts and prayers and I'm relieved to read you're doing better.

[Jackie07]

I've had MRIs every year since 1990 because of my brain tumor (unrelated to bc) history. And I've had three the past 6 months because of one 'problem' tumor that's been causing symptoms.

Within a safe radiation exposure measure, I think everyone who's had invasive cancer should have a routine PET and MRI every few years (if not every year.)

I totally disagree with claims stating routine tests do not improve survial rate. I hope some of the new diagnostic tools will help detect any of the abnormalities faster and safer.

[Mary L]

I see my onc in April and will have my ct scans. I really would like a PETscan as i havn't had one for over 2 years. I will request and see what happens. After all the brain mets that our sisters are experiencing I would like a Brain CT. I don't want to lie and say I am having a problem but I sure would like to find out sooner rather than later. I have a wonderful onc so we'll see. I know it depends on what your insurance will cover. Mary L

[Delaney]

I had 3 brain scans in total, the first two were clear and as I was already on tyverb my oncologist just ordered the third one 'just in case but not expecting anything to show up' and it showed 2 small brain mets. So I really think anyone with her2+ from stage 111 up should have routine brain scans.

[kiwigirl]

I agree ladies. If it had been mentioned to me I would have scanned earlier. The times I've had a CT or MRI I kept think why not the head?

[Gift]

Dear kiwigirl,

My BC also involves lots of lymph nodes but I've not had my brain scanned. Onc said if brain mets occurs, there will be some signs like headache, blur vision, etc.
Did you have any symptom?

I am wondering whether I should have my brain scanned!

[fauxgypsy]

Getting the doctor to order scans is easier than getting insurance to pay for them I am so tired of Blue Cross thinking that they know better than my doctor.

[jra40]

I'd like to thank you so much for your post on the brain MRI! I am new to this website and absolutely love all the support and advice from every one.

I read your post last week and when I went in for treatment yesterday I talked with my doctor about Brain Mets. I have been having headaches for over 2 weeks and when I read your post, I requested a Brain MRI and she agreed with getting it done. Even though she said I am not in the category of metastasis, she still thinks I should have it done as a precaution. I have it scheduled tomorrow.

Many blessing and hugs from Pittsburgh, PA!

[Blondie coco]

Hi Kiwigirl,

First of all I'm so sorry to hear of your recurrence. I hope treatment is going well.
I posted for the first time yesterday. I live in Auckland also. I was not offered head scan of any kind. Only CT scan of body.

I find it quite difficult to trust medical tests now. Microcalifcations showed up on annual mammogram and then had 12 biopsies-all clear and then an MRI-clear. Usually MRI give false positives, so I thought I would be safe. However, my intuition was telling me something. Elected for a mastectomy- which insurance wouldn't cover as there was no evidence of cancer. Saved our pennies and had surgery 9 months after MRI. Thank goodness I did - 10 cm IDCS and an aggressive grade 3 her2+ tumour!!

After this experience I tell everyone now to follow their intuition! We are know saving for another mastectomy. I don't want to go through this a third time. I am sharing this story as like you I have much frustration and anger. However, I can't change the past. I often think "if only I had my surgery 9 mths earlier, the tumor may not have been there". This kind of thinking only eats away at me, so I try and keep positive.

Hope your treatment is going well. All the best, you're in my thoughts and prayers. Try and stay strong.

Blondie NZ

[CourtneyL]

Sorry to chime in late on this (I rarely check this particular forum - although I know I should!). I wanted to offer my experience with brain mets as a precautionary tale to those of you worried about brain mets. In June 2008 I had a brain MRI as a precaution because I had been diagnosed with wide spread mets in April 2008. The MRI was clear thank goodness. Then in December 2008 I had a very vivid dream that my cancer had metastasized to the brain. I HAD NO SYMPTOMS HOWEVER. Still, the dream left me with such an uneasy feeling that I convinced my oncologist to send me for another brain MRI. This one showed SIX brain mets. Again, I HAD NO SYMPTOMS. Often times, by the time you are experiencing symptoms, the brain mets are simply too large to treat with targeted radiation such as Gamma Knife or Cyber Knife. If they are caught small, they can be easily zapped and successfully treated without the need for invasive brain surgery. This is reason NUMERO UNO that I think all HER2 metastatic patients should be getting routine brain MRIs. It can spread without warning and without symptoms. Just my two cents. Better to scan often and have the peace of mind than to wait until symptoms appear and it might be too late to treat. Just my thoughts, after having dealt with brain mets for over 2 years now. Wishing all of you ladies the very best. May you never have to deal with brain mets.