Tool finds 3x more breast tumors - why it's not available to you

Anonymous

Working with a team of physicists, Dr. Deborah Rhodes developed a new tool for tumor detection that's 3 times as effective as traditional mammograms for women with dense breast tissue. The life-saving implications are stunning. So why haven't we heard of it? Rhodes shares the story behind the tool's creation, and the web of politics and economics that keep it from mainstream use.

http://www.ted.com/talks/deborah_rhodes.html

cp418

http://www.cinj.org/documents/MRIandgammaimagingboobol2011.pdf

Trying to find locations where this clinical trial is offered.  The politics and roadblocks do not surprise me, however, I continue to be disgusted by them as they occur every where in cancer research.......  It still continues not to be about putting the patient first.  Dr Rhodes obviously is the exception!

Maybe this is it???

http://www.dilon.com/pages/reference_sites/43.php

jenrio

This new proposed technology sounds somewhat similar to PET, almost a mini-PET that looks only at a breast.  It claims to have low radiation dose, equivalent to mammogram dosage.   But sounds like the radioactive tracer will still go into circulating system (ie, radiation dose is systemic vs localized), so for a general-population and early stage patient, the risk/benefit trade-off is unclear.    This study is funded by Komen fundation.  

I really like that the technology is nonpatented.   Open source is great!   And trying something new is always cool.  Thanks for sharing the TED link.   I'll check out more TED videos.

Some choice bits from this presentation:

US spent 4 billion $s on converting traditional mammography to digital mammography.  25 million dollars are spent on a study that tells us that we gained very little value gained from this massive investment.

I've said this and resay it again:   Prevention/Early detection is an expensive sidetrack in the BC battle.   Cure for the metastatic breast cancer is the only solution to early stage BC.  So invest in basic science, translational medicine and clinical trials. 

Anonymous

CP, looks like the machines are up for sale 

http://ca.finance.yahoo.com/news/adding-bsgi-molecular-breast-imaging-111300831.html

Jenrio, yes, looks like a PET or mini MRI, wonder if the contrast is also cesium or something more benign

My choice bit: By law, a 40 pound pressure must be reached during mammogram.  OUCH, just thinking about it ..... 

I know, just read that 3D mammo is no better than the old machines WTH ! 

cp418

My next question is - if this new methodology gets more widely distributed and put into use, how hard will it be for patients to get this scan?  I've had nothing but battles and flat out resistance from my breast surgeon and oncologist refusing scripts for MRI or US to supplement my yearly mammogram.  They would not even give me a script for alternating years.  My IDC was deep against the chest wall so I have no faith in physical exam.  I changed PCP and asked him for a script for Sonocine US along with my mammogram script.  I paid for the Sonocine US out of pocket because it was the only way I could get it done. 

Since this knowledge is not helpful to me now ---- I did have dense fibrous breasts when dx and it was not considered at all.  IMO I strongly feel my cancer had been previously missed because of it.

Anonymous

CP, you must put your foot down little sister. At first, my onco, BS and company tried to impress me into submission, but.....I have since realized that I AM in charge, it's my body.  So now, they listen to me.  I now say I WANT.  My onco, the least flexible one of all, is now listening to me. Was quite a job to get his attention though.

Just saw my BS last week.  I said NO to repeated mammograms.  I will have one on a rotating basis with MRIs and ultrasounds.  Although I don't know that I want to repeat the MRI option, did not like the cesium part of it. I asked him about thermography which my clinic did have at one time and have now replaced it with 3D mammo.  He dismissed it. Just heard of RODEO MRI which has 20 X higher resolution than regular MRI.  Will have to find out if the MRI I had done approx one year ago was from a rodeo machine.  If so, I may go back for a MRI - there are ways to detox from radiation.  Next on my list is the US.  I have the script which the BS gave me last week.  In the meantime, I'll be checking if I can get BSGI in my area.

I would suggest you print out the studies you know so well and march into your providers' offices armed and ready.  Tell them you know very well the limitations of each option and that you want to have them on an alternating basis. Period.  

You go girl ! 

jenrio

cp418,

You are the most widely read and most prolific/informative poster on this forum!   If even you are having trouble getting the care that make you comfortable, then something is very wrong.

I checked the paper quickly, it seems like a mix of "sentinel lymph node mapping" and pet.   Very interesting idea, the dosage should be localized in the chest region and less systemic than a PET, which is a good thing because a general population patient probably won't want a lot of radioactivity on their brain for a routine test.   But lungs/heart will still get a good exposure, so the cost/benefit analysis still await consideration.    This test will have to be done in radiology with all the "radioactive danger" signs hanging around, which might scare some general population patients.

What's wrong with the US medical system is legion.   Read Atul Gawande's article: 

http://www.newyorker.com/online/blogs/newsdesk/2010/12/the-cost-conundrum.html 

The TED talk touches upon one of them:  4 Billion wasted on digital mammograms that's not much better than traditional mammos.   25 million wasted on studies that show this 4 billion dollars are wasted.

There are also issues of genetic patenting that hinders progress and innovation.  genes should be public domain and completely free!   No researchers/drug developers should have to pay no patent fee.

Recently I've seen a new breast cancer center in our region and a new campus built for our local hospital.  I love the local hospital, but I do question whether spending millions on building a new sparkling building that is "less depressing" is more important than investing in science, cures and more clinical trials.   It's like the building boom in universities, fancy dorms/gyms/what not, and parents and taxpayers get stick with the ballooning bill.    I look at the building and wondered about the bill.   I am depressing.

Patients need to be educated and ask for tests/treatment that truly add value.   and not ask for the tests or even refuse tests that are expensive and primitive.   I don't much like oncotype Dx for example, they gave you only 4 data points (with no physical meaning that I can understand) for a purported 13 genetic screening, and ask you to rely on their algorithm that is really just based on 700 patients sample.   For that they charge a few thousand bucks.   BRCA1 BRCA2 genetic tests are also in this category.   There are now both research alternative, donating tumor sample to university researchers:  

washington university at st louis

national cancer institute genome

and commercial alternatives, non of which are really comprehensive or up-to-date, but they are better than previous generation tests and not that much more expensive.

As Atul Gawande puts it well:  The good news is that there are plenty of fat that can be cut.    I'll add, if we need to pay out-of-pocket, MRI and PETs are much cheaper overseas.    

cp418

Jenrio - thanks for the complement but I am not actually all that widely read --- not enough time in the day with full-time work!!!!  I scan many websites and if I see ANY article that might benefit someone  - - I post it.  I may recall an article or site to point someone to but I am not an expert on many of these medical topics.  I'm just another breast cancer patient frustrated with the politics and lack of progress in find better treatments and a CURE......  It is heart breaking that so many women continue to die.

jenrio

cp418,

thanks for the links and please keep them coming.   Internet allows us to learn from each other and the only way we could learn is through an open mind.   Cancer is very smart, but we aren't dumb either.