SCANS, PETSCANS, MRI

Lily2011
Lily2011 Member Posts: 2
edited June 2014 in Advocacy

My mother was diagnosed in 2007 with Stage I Breast Cancer. After Surgery and Radiation we just found out in March that the cancer had spread to the lungs, hips, part of her spine and now the brain. None of it was in the breasts. She was having mammograms done religiously.

I don't understand why everyone is not being told to have: Petscans, Mugas, Scans, MRIs done after having had breast cancer. Why only mammograms? If we had known about these kind of tests, they would have caught the cancer before it spread all over her body. Why the big secret? Or was it only us, that didn't know?

We need to introduce these words into our vocabulary: Petscans, Mugas, CT Scans, MRIs and not only Mammograms.

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Comments

  • msjag
    msjag Member Posts: 416
    edited August 2011

    Lily, so  sorry to hear about your mom,  I can share my experience so far. My onc, BS, and or RO, will do tests if presented with symptoms. (Like a headache that comes/goes, hip pain, breathing issues),  I also am having a MRI as my first after  surgery/chemo/rad follow up.  I had CT scan, chest x-ray, MRI after being diagnosed with BC, before starting treatment.

    I'm finding there isn't a set protocal for all BC treatment centers/oncologists. Most threads that I have read/been a part of talk of also having to have symptoms in order to get specific tests, some docs don't want to introduce any more radiation than necessary.  Yet others say their docs have  certian scans routinely  done.  

    Please know we are here for you and your mom.

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  • Lily2011
    Lily2011 Member Posts: 2
    edited August 2011

    Thank you, I appreciate your input. This is overwhelming at times. I am so disappointed with the way the medical profession is handling information. There needs to be consistent guidelines. Until then there will continue to be a lot more victims of mis-information or the lack of it.

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  • Malou
    Malou Member Posts: 14
    edited August 2011

    Lily,

    Thanks for bringing up this topic.  I am not one to complain so there have been no follow-up other than mamo which is alarming to me.  I am changing onco's and this is very much part of the interview.  I am so sorry about your mom but hopefully you are starting a change in the management of information for all of us. 

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited August 2011

    All the available tests have benefits as well as downsides.  Sometimes the risks of certain tests can outwiegh expected benefits. The test may do more harm than good.   Oncologists tailor tests based on the characteristics of your tumo & symptoms. At first I alternated every 6 months between a mammogram and a diagnostic mri. That way I was having some sort of review every 6 months.  After 2 years I now am tested once a year unless I experience a concern.

    Before you meet with your prospective onc, prepare a list of questions. Ask about the different tests you have heard about and if they would be beneficial to your situation. Take care!

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2011

    Hi Lily, 

    MUGA is a test that measures left ventricular (heart) function.  It doesn't discover cancer, so I think you might be confused there.

    And, there are clinical guidelines:  http://www.nccn.org/professionals/physician_gls/f_guidelines.asp.  You have to register to view it.

    For stage I women, PETs and CTs and MRIs are not recommended unless there are symptoms.  PET scans miss up to 1/3 of tumors under 1 cm and are not considerered reliable for early stagers.  

    CTs and MRIs need a spot to be imaged and if you have no symptoms, how do you know where to use the tool?  CTs also give a large dose of radiation that can actually end up causing cancer. 

    Since women who are Stage I have a very low liklihood of mets, they weigh the negatives against the value of the test.  There have been many studies that show there is no extension of life if they wait until a woman becomes symptomatic to do these tests.

    And, you also don't know how long it took the cancer to grow so you can't assume it would have been caught.  I had a CT of my liver in December that showed nothing.  Five months later, I had another CT and had large lesions on it.  They'd grown in 4 1/2 months.  Cancer can grow and spread fast.

    Most of us here know about these tests.  I'm sorry you and your mother didn't know about them.  But, unless she was having symptoms, in all liklihood, her doctors would not have done them anyway.  Some go againsts recommendations and do a baseline PET but not all.  Mine didn't, and it turned out not to be necessary.  When mets grows, it becomes clear.

    There is a tremendous amount of information on this website and others that will teach you all you need to know.  Be careful though, there is also a whole lot of misinformation out there too.  Stay with sites like the Mayo Clinic, etc.  

    I'm sorry for your mother.  There are lots of treatments out there that can help stabilize her and maybe even get her to NED.  Come on over to the Stage IV forum, lots of women there can share their experiences with treatment. 

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