Well, I got my brain MRI...

[jener8er]

thanks to all of YOU here for empowering me. I never would have pushed for it like I did today without all of your voices in my ears! My oncs reasons were that mets to the brain are not curable and when treatment begins makes no difference to survivability. He said scanning was not standard of care, nor cost effective as the final outcome will be the same. Not sure I agree with him, and I argued what I'd read here about things being different now with Herceptin. He said OK, we'll scan you then. So I go on Friday, should have results Monday.

Thank you ALL again for all that you contribute to this site - where would some of us be without you?

[Lisa]

Way to go! I love to hear about survivors "reasoning" with their oncs.

Do keep us posted and best of luck.

Love and light,

Lisa

[Joe]

Now that you mention it, I found this excellent article about progress in treating metastatic brain tumors:

http://nano.cancer.gov/news_center/monthly_feature_2005_dec.asp

Regards
Joe

[Sheila]

Jen
Glad to see you had it/ now for good results!!!!!

[tousled1]

I had a few "fainting" spells and my oncologist immediately sent me for an MRI of the brain -- everything came out fine. Glad your oncologist sent you. I say better safe than sorry.

[Berta]

I too was told by my oncologist that an MRI was unnecessary without symptoms. He changed his mind when I developed headaches. Turned out to be stress headaches, thank goodness but I sleep much better having had the MRI.

Berta

[sabpri]

Glad to see you are getting your MRI. I will make sure to pray for you that all is well. Are you having any symptoms? You can e-mail or post me back.

Natalie

[jener8er]

Hi Natalie and everyone else, thanks so much for your replies. The only symptoms that I'm having is dizziness off and on and NOT sleeping well. I would have thought that the sleeping gets easier the further out you get, but I'm getting worse. I wake up every night either sleepwalking, bad nightmares, or the worse of all, night terrors. You know like kids get when they wake up terrified and panicking? Yep, that's me, almost nightly. So my onc called the mri my sleeping pill! I do have headaches, but I always did and think it's just stress or lack of sleep.

Anway, I had to change my appt to Monday, with results now on Tuesday, so I'll keep you all posted. How are YOU these days, Natalie? I read your journal and you seem to be doing well - so glad to hear. I'm not going to INCIID much these days, would rather hang out here :) Hope you're feeling well.

[AlaskaAngel]

I am very glad to hear your MRI was reassuring and I'm glad you chose to get one because you do feel strongly about it. We all have to figure out what fits each one of us in asking for testing.

I had my MRI too. My symptoms were headaches and occipital neuralgia (correctly diagnosed by my PCP), and mild disequilibrium that continued for over a month, so I did go in for the MRI, which came out fine. But I'm not convinced that brain MRI's for all symptomless early stage NED HER2's should be done.

AlaskaAngel

[Unregistered]

i am an oncological Physician Assistant and I read this site from time to time...I can't believe your oncologist would say such a thing. We never deny anyone the right to scan ANYTHING. I am glad you pushed for it...there is no reason why you should not know everything that is occurring in your body. Keep fighting for what you want....although it shouldn't be a fight, it should be a partnership.

[Lisa]

Alaska Angel,

I don't believe we've ever pushed for early stage brain MRIs. Perhaps we(or I)misspoke. Normally, scans like bones and CT are done at the same time the initial cancer is found to make sure there is no metastasis. If they prove negative, the breast cancer is treated and there are usually no more scans for 6 months, 1 year or longer. Further scans are done when blood work or symptoms show a reason to do them. But brain lesions are showing up more and more frequently WITHOUT symptoms. So if oncs are doing further body scans because of mets suspicions, it's the perfect time to do a brain MRI as well. I, for one, am very glad I asked for and got an MRI. Several small mets appeared and I was treated.

I'm so glad your test was negative.

Love and light,

Lisa

[AlaskaAngel]

Hi Lisa,

I am a little reluctant to post much about this as I too think MRI is important for some to have, even without symptoms, and sometimes not even on a one-time basis but regularly.

But at the same time, in reading posts about this topic I see that often the information about each person's situation is vague. If most bc patients are now being diagnosed as early stage, then it makes some sense that probably a large number of people here are early stage. The discussion about the need for MRI's for HER2's has been very generalized. I do think there needs to be a post about this that is specific to early stage, so that the difference isn't just assumed to be understood.

Thanks for your patient response, Lisa.

AlaskaAngel

[Chelee]

I just wanted to comment on what the "unregistered" person said. She commented that she is a oncological Physician Assistant and they never deny anyone the right to have a scan on anything.

She hit the "keyword" here...its our right to have such scans under the circumstances. I know I to was denied a MRI of my brain. I had a right side mastectomy any lymph node invasion and was VERY concerned about some vertigo I had been having off and on...so I asked for a brain MRI. I was told NO....its NOT necessary.

Long story short...I pushed for it and same as demanded it. He gave up and said ok. He said the reason he orignally said no was because I had told him of all the dental work I had the prior year...he said it was from that. Then he told me since I had the vertigo on and off for a year or more...it could not be from cancer mets because within six months I would of been death.

Gee thanks doc...cheer me up. I was already stressed enough being new to all this. But I notice if you don't let them off the hook and you FIGHT for your RIGHTS...they WILL give you the tests. I got mine and thank goodness it was clear.

Chelee

-- -------------------------------------------------------------------------------
Stage IIIA, Er &Pr positive, Her2/Neu 3 +++, 5 0f 11 lymph nodes, Richardson score 9 of 9.

[tina]

i have brain mets and they treated it with temador,gamma knife and now there going to cut into my brain to remove two tumors by the cerebellem. i didn't know if any of the others had this done or if they new how long it would to recove from it? or how painful it will be ?

[StephN]

Hi Tina -
I had an incision to remove a suspected recurrent brain tumor met in Feb. It thankfully turned out to be NOT tumor, but radiation necrosis that was bleeding. Why it was so "bright" on the brain PET scan and look so much like active tumor.
They cut up the center of my scalp in the back between the two main tendons right on the spinal line. This was for accessing my cerebellum and to get at the tumor site behind my left ear.
I don't know how your surgeon will access your tumor area, but you MUST ASK those details. I have a long scar and they shaved the whole back of my head.

It did not hurt very much - the main discomfort came from the trauma to the neck area and all the way around under my chin - even my jaw was sore (Had to eat in little bites and use a straw to drink). They turn you on your stomach and you have some breathing tubes in your mouth, etc.
Longer recovery from the stiffness in my neck. Could not drive for about 2 weeks as could not turn well enough to see.
They took out the outer staples after one week - there were about 24 so you see it is a long scar.
Now my hair is growing back and I can put away my chemo hats and berets that I was wearing to keep from shocking people with that scar. The swelling is down and I can sleep in any position now. I still have to limit activities like gardening where my head is down for very long.
You will do fine - please keep us posted, OK?

[tina [slick]]

thank you for the hope of not to much pain and there is light at the end of thewalk with cancer. i was hopen that there wasn't going to not much pain thank you for writing me...god bless you

[StephN]

... has been the main discomfort. I did not need much medicine for actual pain. I could get by with 1/2 an oxycodone two times in 24 hours when I got home from the hospital after 3 days there. Thus, I was to too "fuzzed out."
All best wishes for a successful outcome on Wed.