Heads up, Ladies...roll call

Friends,
As many of you know, our friend Mary was just diag. with brain mets after having been declared NED only weeks ago. And she has not one or two, but "too numerous to count!" Why? With all her tests, she never received a head scan.

My doc has run 3 sets of CT scans on me since my diag and has included head in all. As I was told yesterday by my nurse practioner, they are finding more and more brain mets because we're living longer on Herceptin. About 1/3 of all Stage IV cancers end up with brain mets.

So my roll call question is this...have you ever had your head scanned? And my statement is this...if not, DEMAND you do so as soon as possible. Keep Mary in mind. She had NO symptoms. But now must do WBR since so many mets exist.

Love and healing light to all,

Lisa

I have had one brain MRI since Stage IV, due to worrisome headaches. The scan was clear and my onc said standard protocol was to wait for symptoms. I just had my annual scans which did not include Brain MRI, but will be seeing my onc in 3 weeks for routine clinical; rest assured we WILL be discussing this issue and I will ask for another Brain scan!
hugs, Lolly

I have never had a head scan, but will ask for one now....we just never know...I was feeling great when I was originally diagnosed with BC, and feeling great when I was diagnosed with mets..maybe now that I am tired etc, I must be healthy!!!
Hugs
Sheila

I had an MRI of brain but don't remember how long ago. Time flies when you are having fun. Short term memory loss helps me cope also. I was having a little "blurry vision" so I said and got the MRI that way. Found head empty but I am going to push for another one to make sure. My onc barely gives me any scans so that should be a challenge. Last time he was out of town and the nurse practitioner ordered the scan. Now I just have to schedule an appointment during his spring break.... They will surely wisen up with all these facts at their disposal. My doctor doesn't even do tumor markers. He is a wait and see kinda guy. Lola

I have had two so far, one year apart. I'm contemplating getting one next month, which will only be 6 months since my previous.

I started when Christine mentioned a while back that we should all do it.

Blessings and Hugs,

Linda in MI.

Push, Push, and Push for Brain MRI even if you don't have symptoms. I had a tumor in my brain and I did not have any symptoms until it grew to a golf ball size. I had a surgery to remove it but I regret that I've never demanded a brain scan prior to the discovery. My brain tumor was too big for a radiation therapy so I had to get a surgery. Initially, I was Stage II.

I have never had an MRI, but I do get petscans of the brain. It is one of the new machines that does the pet and ct and combines them. I hope that is as good as and MRI. I will be asking next time I'm in. I had to ask for the brain to be done. It is not part of a normal petscan! I didn't have the head done on my last one, but did on the previous one. I have pet scans every 3 months right now.

One more scary thing to think about!

Question: if the people you've mentioned had no symptoms, and no routine scans had been done, then why/how were the brain mets discovered?

I had a brain MRI with contrast last fall. It was normal. I only had the test because of some numbness symptom I was having in my neck. Otherwise my onc. had never mentioned scanning the brain like I do other routine scans.

What is the best brain scan? MRI? CT? PET?

Lisa,
I agree 100%. I told my onc. that I wanted a brain scan and he said not until I get symptoms, there was no need for one. We have had this discussion on 2 occasions and only when I brought it up. Mary is a perfect example of why we MUST insist on a brain scan BEFORE symptoms. I see my onc again in April and I will demand that he order it or I will seek another onc. I adore this dr, but it is my life, not his that is at stake.

Hugs,
Janelle

Orig. dx in Nov '02, liver and bone mets in 12/03. But I developed a sore, stiff neck all of a suddent during last Thanksgiving week - before dx of mets. Mentioned it to all docs I saw, but all seemed to dismiss it. Will bring it up to onc this Friday when I see him before my Navelbine infusion! (I still have stiff neck)

We can always say we have headaches and its true now and then! Or our head feels funny and vision not quite right or a little of all of these. My doctor doesn't believe in doing MRI's unless there are symtoms. Now, I have a different doc and haven't asked him. I know lots of it is the insurance. Hugs, Sandy

Hi, my deaf friend and the mother in law of my nephew had a mastectomy 12 months before me, she had a lump and was told that she only needed the lump removed but she opted for the mastectomy to make sure. 12 months later she got bone mets, a further 12 months on she couldn't tolerate chemo and her markers kept climbing and they did not know why until she had a seizure at Christmas and then a few more seizures and the CT reveald brain mets, she had WBR for this and died 6 months later. When I asked for a CT of my head I was told I didn't need one because I didn't have any symptoms, wrong answer, I just stated that "Dusenka didn't have any symptoms either" the point was taken and I get the head as well. One time my chest was only done so they missed the lumps in my neck which I have been dealing with now since 1998, when is our life cycle supposed to change is it 7 years or 9 years because I can't wait.

Hugs Lyn

Several of the posts have mentioned problems with insurance coverage. Although insurance is a great thing to have you alwys have the option of paying for a scan, yourself. I wanted to have a PET scan done of my head and because I had no symptoms my Onc said "No". I called the facility where I had recieved my radiation for breast cancer and asked if I needed a Drs. referal to have the scan done. They said "No" that I could just order it myself. They also had a VERY reduced rate for a straight cash deal. They charged a fraction of what they would have charged the insurance company. So this might be an option for some of you who really want a scan. Personally, I feel the benifits of finding brain mets early far out weigh the $1500 I would have to pay for a scan. Take Care, Linda
PS. I eventually developed blurry/double vision and my Onc ordered an MRI in Dec. that came back clear. Seems the chemo messed up my eyes and I needed a new perscription for my glasses so I didn't have to pay for a scan out of my own pocket after all!

I have an MRI once a year since dx in 2000.

by all means get scanned regularly not wait for symptoms- I waited til I had symptoms -had an MRI which showed 6 tumors- had WBR- but my former onc would not even do a follow up scan-said there was no point unless I had symptoms.my former onc . I said baloney and changed doctors. My new one is very willing to refer me for anything I want. I was dx with the brain mets last Aug- then I had a follow up in Nov which showed one new lesion - the radiation dr did not think anything was nec at that time - and I felt ok. But about 2 months ago I started having headaches and kind of lightheadedness so I had an MRI which showed a total of 3 lesions all under 1 cm. I decided to wait on things because I was having other problems to deal with but I am going to see at my next visit if I can talk to the radiation dr again about gamma knife - Hopefully that will be an option.
So please stay on top- get regular brain acans along with any others you need. I have a regular schedule every 3 months for various scans, and an echo and I am definately adding the brain MRI to the list. God Bless. Pattyd