Musa Mayer-Life after Breast Cancer

[RhondaH]

Interesting question/answer:

http://www.webmd.com/content/article/75/89918.htm

Rhonda Hoffman

[AlaskaAngel]

Musa is what she says she is and much more. Thank you for sharing that with us. Here is a site that lets you chose to listen to a taped discussion with Musa that was done on NPR.

Please come back and let us know what you got out of it:

http://www.npr.org/templates/story/story.php?storyId=4598496


AlaskaAngel

P.S. Consider donating to NPR as a way of keeping access to anything you find on it that is helpful.

Okay, I'm a little bent out of shape by Musa Mayer's comments, especially considering she was dx'd Stage II in 1989 & from my understanding, has never experienced a recurrance, local or distal. So, how does she become an authority on what it is like to live WITH Advanced BC and survivING WITH Stage IV disease?
I found the following comments particularly interesting:

"… early detection of metastatic disease through testing before you have symptoms doesn't offer an advantage for you. This means that you don't have to drive yourself crazy with repeated tests every time you see your oncologist. It means that your body will let you know if there is a problem..."

I think Ms.Musa has missed the boat with comments like these. SurvivING w/this disease isn't about NOT DYING.In my opinion, it's about THRIVING and maintaining the highest Quality of Life in the face of it! Why wait until the bone mets are causing you pain or the liver mets are making you feel crappy or the brain mets are causing neurological problems, if we can take steps to treat while the tumor load is still small & prevent symptoms? Yes, we know we can't be "CURED", but I will gladly live 110 years with this disease, so long as we keep in under control!

I'm also VERY VERY VERY curious about everyone's thoughts about the following comments. When NED, I get scanned ever 2-4mos for "re-staging", to make sure nothing new has popped up or that NED is still around.

"There is very good research that shows that patients who have follow-up testing done, by which I mean bone scans, CT scans, MRI's, tumor markers, etc., in the ABSENCE of symptoms do not do any better or live longer than patients who do not have any of these follow-up tests done.
So what I am saying is that in terms of making sure you don't have a recurrence, it is not dangerous or harmful to wait until you have a symptom. You don't need to be tested periodically to make sure that you are cancer free.
Catching a metastatic recurrence before you have symptoms, versus catching it a month or two or three months later when it's causing symptoms, makes no difference in the course of the disease or in survival. When I found this out and read the research that demonstrated this shocking fact, I was stunned.”

I know some folks have posted that their docs have suggested No Scans Until Smptoms, but I thought that was primarly for early stage.
So, Fellow Stage IV'ers, what are your thoughts?
Keeping the Faith!
Jessica

[RhondaH]

were directed more at Early stagers, sorry that it upset you so much. I TOO have no idea what you are going through, but my thoughts and prayers are with you all. Take care.

Rhonda Hoffman

[AlaskaAngel]

Hi Jessica. The discussion about whether it makes any difference or not is a particularly difficult one, because as individuals we want to have control over the disease and our future. It is hard to make sense out of the idea that the numbers say that waiting until we have symptoms produces the same results as frequent monitoring with scanning, etc. It goes against common sense, and as I understood it, Musa felt that way too originally until she analyzed the information personally. Again, numbers are a way to try to figure out in general what is going on broadly, and they don't necessarily explain WHY the trend is there, nor do they mean that it is true for any specific person.

If you get a chance, take a look at bcmets.org, a really good site for those who have mets.

The reason I speak highly of Musa is because she understands many of the technical aspects of the disease and is particularly good at translating complex ideas and discussing them -- even the issues that aren't "popular".

AlaskaAngel

AA covered things pretty well in just a few lines. I'd like to add that, having lived with mets for over three yrs, I find Musa to be EXTREMELY knowledgeble, compassionate, generous and helpful. She exausts much time and energy getting the latest good research from the source.

[Sandy H]

My oncologist does follow up scans every 6 months because I am IBC. He said outside of IBC and NED he doesn't do it. He says it depends on the patient and their level of anxiety and their stage of disease. He says each patient is different and so he listens to them and they together decide what is best. I am sure insurance plays into this whole game!! Fortunately, mine has never been a problem for me. hugs, Sandy