Hi Guys

naturaleigh · 02-12-2009, 06:11 PM

Been gone awhile: computer problems.

I have a question I hope someone can answer. I have been experiencing little pinges in my head. A headache like I have never experienced before. It is almost like I can touch where it hurts each time. Lately, I have been having pains behind my ears also.

I can not find a doctor who will do an MRI on my. My Onc keeps telling me MRI's are not done on BC patients, so I decided to go to another Onc and he tells me the same thing. Can brain and lung mets be found through Cat scans? Is anyone else have this problem of never having an MRI?

BonnieR · 02-12-2009, 07:23 PM

I had a brain MRI a few months ago. I am not understanding why you are being refused.....

vickie h · 02-12-2009, 07:36 PM

Anita, I am having a brain MRI next week and it is covered by insurance. With your headaches and history of BC, you should be having an MRI. I don't understand those Onc's or what they are thinking. If I just mention headaches, my Onc immediately thinks "Brain MRI" just to be sure. Please find a third opinion, if you can. I would seek out a very large practice or cancer center if at all possible. Good luck. Love and prayers, Vickie

CourtneyL · 02-12-2009, 11:42 PM

I second, Vickie's advice. Keep looking for a doctor who will agree to send you for a Brain MRI. It is the best way to check for brain mets. These docs should know that up to 30% of Stage IV Her2+ women will get mets to the brain. I was asymptomatic when I had my brain scan that showed 6 spots. My doctor was a little surprised because he wouldn't have ordered the scan but I insisted - after reading posts from the ladies on this website. What is also interesting is that I had a clean PET scan a day before my brain MRI and it showed nothing. My mets were too small to be detected by the PET but they showed up on the MRI. Definitely get the scan. I pray for you that it is nothing - but if it is, better to catch it early so you can Gamma the heck out of them!

Jackie07 · 02-12-2009, 11:54 PM

They are just trying to cut costs. With my brain tumor history, I am supposed to get an MRI every year. The treatment center sent me a reminder (to send them the films) every spring. Yet my oncologist arranged it only reluctantly last year. And this year I gave the notice to my primary doctor - haven't heard back from him after two weeks.

ps. finally got it scheduled - March 6th.

Midwest Alice · 02-13-2009, 05:17 AM

I am asymptomatic and have a MRI of the brain scheduled at MD Anderson in April. Dr. C said they are seeing a trend of my type of cancer to show up in the brain at about a year with out any signs.

Are you near a major medical center? I am seeing that having an onc at a research center and one in the clinical setting is a big ++++. They both treat differently for our benefit.

naturaleigh · 02-13-2009, 08:57 AM

Needing to vent and ask a question.

I just called my regular ONC to up my scans and a to schedule a MRI. As always, I get a recording. For the first time in over three years, I actually got a return call!! This was not from the nurse whoever, it was from one of the schedulers. She assumed I had talked to the nurse so she had several questions for me as to what the nurse said.

The only thing I got accomplished was to up my petscan from April to next week. Personally, I do not like Petscans because of the toxins they are putting in my body. From all of your stand points, which is more conclusive a PC or an MRI.?

Well a nurse just called me back. They do not want me to do an MRI because the Petscan is more conclusive and will show any changes I may have better than an MRI. I asked why the refuse to do an MRI and she said they are not refusing, they just want to see what if any changes the petscan shows before going further.

I have come to the conclusion that I need to go out of state for another opinion. Any one here from the North Carolina or Georgia area that can give a good recommendation?

Thanks again for the wonderful replies

Debbie L. · 02-13-2009, 09:15 AM

While it's true that brain mets are more common in HER2+ cancer, it's also true that they are very unlikely to be the first place of mets after primary breast cancer. If they happen, they typically happen to someone who's already been diagnosed as stage IV with mets somewhere else, and then they show up in the brain. That's where all the stats about the increased likehood of brain mets come from. So your odds of having brain mets as first site of recurrence are extremely small (but it does rarely happen). If that helps any.

Are your headaches getting worse? If they are, that would be a good thing to emphasize to your providers, and might be enough of an up-the-ante to get the okay for an MRI.

I think an MRI is considered the best tool for brain assessment. PET's don't get the tiny stuff, which is what you want to be able to see in the brain. CT's are sometimes used but if something is seen they end up doing an MRI anyway. At least that's what I was told.

What about making an appointment to discuss this in person with your onc? I assume that after 3 years, you have a relationship established. (Once we get them "trained", it's a shame to give up on all that effort).

Good luck,
Debbie Laxague

naturaleigh · 02-13-2009, 10:20 AM

Thanks for your quick reply Debbie.

BonnieR · 02-13-2009, 10:40 AM

I should add that I had the MRI because of feeling of "pressure" on the side of my head and an episode of double vision. So my onc ordered the test. It was negative for tumor but showed abnormal small infarctions (possible strokes!). Then I had to see a neurologist who said that the report had been "over interpreted" by the rediologist or words to that effect. And I am fine. So it turned out to be much ado about nothing. Another day in cancer land. But it provided peace of mind. We are entitled to that.

Believe51 · 02-13-2009, 10:55 AM

Hey Babe, wanted to add that Ed has another brain MRI on the 17th (Tuesday). If you look at his history, this is not his first one, poor thing! This has been the best means for his brain maintenance and have found mets as small as a half of a grain of salt.

I have no other advice to offer except to get assertive with the doctor and express your concerns once more. Please keep us posted. Sending you a cyberhug and positive thoughts your way.>>Believe51

Emmay · 02-13-2009, 04:08 PM

Since my sister's diagnosis of brain mets 16 months after being diagnosed with Stage II Her2+ breast cancer (almost 6 years ago), she has had an MRI done every 6-8 weeks, and it has been key in staying ahead of the mets with various treatments... Her initial symptom was a recurring headache -- her oncologist took this very seriously and ordered an MRI immediately. She has only had PET scans pre-surgery and very occasionally to confirm/give an alternate view of what was seen on the MRI. MRIs cost less than PET scans, and an MRI does not involve exposure to radiation, as a PET scan does.

Duke University Medical Center in North Carolina is very progressive in their cancer treatments (that is where Ted Kennedy went to have his brain tumor surgery and treatment, even though we have several excellent cancer treatment hospitals in Boston). In Atlanta, Georgia, Emory University Hospital would be another nearby option. Keep pursuing this until you find a doctor who will order an MRI for you, and hopefully it will show that you are fine, and give you peace of mind.

sassy · 02-13-2009, 08:42 PM

I agree with Emmay that Duke would be a good option as well as Wake Forest in Winston-Salem. Those centers associated with teaching facilities seem to be more progressive in treatment.

I wish you well.

Darlene Denise · 02-27-2009, 08:45 AM

Anita: I am lucky to have an onc that feels it is imperitive to do MRIs on HER+++ based on the likelyhood that we may experience brain mets AT ANY TIME with our tumor type. Mine were revealed on a routine MRI just 8 months after dx with no symptoms and NED neck down. He had one done at staging, three months later and six months later, which was done a little early because of scheduling. Good for me, since we caught them all under 6mm. My onc is a scan-a-holic, he says you can't fight what you can see. Let your onc know that you do not want your insurance company dictating your care. Order the scan and see if there is an approval issue, don't assume there will be one. Some HMOs penalize physicians for certain tests. I hope this is not the case for you. Ask your onc what the issue really is and insist you will accept only the most progressive care, your life depends on it!

I received Cyberknife treatment at UNC Chappel Hill, NC with Dr David Morris. Dr Lisa Carey is a highly sought after breast oncologist at UNC. She treats Elizabeth Edwards. I will be going to UNC for a follow up brain MRI Monday. Hoping for only good news!! I live in Virginia Beach, Va and my community onc is superior but knows his resources may have limits and is very supportive about reaching out for additonal care and guidance. He has consulted with Memorial Sloan Kettering on my case twice and I have a breast onc at Dana Farber that follows my care as well. My Dr at Dana Farber knows Dr Lisa Carey at UNC and is very complmentary of her and her work.

I say cast a big net and let your onc know he is key to you receiving the best care with the support of others in an academic setting.

All of my best hopes and wishes to you.

Darlene

Ceesun · 02-27-2009, 09:43 AM

My lung met in 06 was found by CT. Ceesun

Joan M · 02-28-2009, 08:35 AM

Anita,

I would keep searching until you find a doctor who will do routine scans.

I would start with a CT scan with contrast of the chest, abdomen and pelvis (for which you'll get two reports -- one for the chest and the other for the abdomen and pelvis), and a bone scan.

I did not have an MRI of the brain until the cancer had spread to my lung, but I had no symptoms. I asked for the scan because the cancer had spread to the lung. Even when my brain tumor was found on a second follow-up brain MRI, I still had no symptoms.

Joan

StephN · 02-28-2009, 11:55 AM

Hi - Natural -
I am a little confused as to your status now.
Are you still having the headaches? Hope the are better.

If so, a brain PET (I assume you mean for your brain when you are talking PET) will NOT be as accurate as an MRI in finding any mets that are very small.

I had a brain PET - but only a year AFTER my Gamma Knife to try to sort out why the area of Gamma Knife in my cerebellum seemed to be lighting up in an irregular pattern. The brain PET was NOT conclusive, so I had the area excised anyway, with the tissue turning out NOT to be tumor but necrosis or dying tissue.

Thus - if you want your brain checked, my advice is to have the MRI and not a brain PET, which is not as specific.