My mom's recurrence was pleomorphic ILC which is actually how I stumbled up on this thread in this forum! Her gyn had her do the full panel genetic testing back when I was diagnosed with my recurrence. That's how we found the variant. Low and behold, a few months later, she's diagnosed with a new primary. Her local docs were dragging their feet getting her into an MO, so I researched her subtype and found a researcher close to her at Rutgers who researches her subtype and they also did Foundation One testing on it. My MO and the geneticist locally said that since the results would not alter my course of treatment (since I had BMX already), insurance would not cover the broader test. Hence I ordered the Color test and am awaiting results. It's so nice to have an afforable option. I am sure I could get my MO to order the broader test, but insurance would deny it and though I could come up with the couple thousand dollars, I certainly appreciate only having to pay $250 for information that's maybe not quite as comprehensive, but sure more than I have now! My MO is with the biggest cancer center around, though not a major medical center. I did get second opinions at Mayo though, and they unfortunately, told me the same thing as far as the further testing.

farmerlucy - thanks so much for your kind words. I always hope some article may provide information to someone to be informed and ask questions of their physicians. I recall what a vertical learning curve it was for me and at times I was treated like a PITA for asking questions.

I went back and pulled my BRCA testing and it was done in Nov 2011 - back then when I asked about PTEN and CHEK2 testing I was told NO. (This was a consult at Rutgers affiliated with RobertWood Medical Center - maybe it has changed now?) So it will be interesting to see what /if anything comes up. My nutritionist was the one who would discuss genetic testing with me. She had ordered MTHFR test and came back with a mutation. I have extremely high levels of folic acid so it appears my body does not process it. Anyway she was the only one interested in genetics as my surgeon and oncologist would shut me down on the topic.

No - I don't recall but I've come across so many articles. Do you have a link? I'm guessing due to the MTHFR gene issue. Also - I do not take oral vitamin supplements except for vit D.

http://www.sciencedaily.com/releases/2014/01/14012...

http://www.medicalnewstoday.com/articles/271601.ph...

Google found this.

I have to go back and look through my lab reports. These tests were ordered by my nutritionist who will order tests not covered by my MO or GP. I remember very HIGH values which I think made her pursue the MTHFR screen. Plus recently my BP has been going up where previous values were excellent - AND trying to get the elevated cholesterol under control. Femara causes problems in both these areas AND I was dx with hypothyroid 2 years ago. I DO NOT want to take MORE meds such as statin and for high BP on top of the Armour Thyroid meds and Femara. Enough already!! (Banging head on wall)

I have an appt in March to see my Nutritionist as it's been a while - - derailed last year with Lyme dx. I'll discuss all this *crap* with her and see what she orders and has to say. I also am not keen to take 50 pills of daily supplements which some folks get carried away with. Somewhere there needs to be some common sense approach to not over medicating and over supplements. (okay - I'm venting again.)

Ordered my Color Gen kit last night, it's in the mail today. I hope it doesn't take too long to get results. It says at the website that most turn up negative. We'll see. Knowing is better than not knowing for me.

Ok, my test kit came yesterday and I missed the outgoing mail today. So it won't go out until Tuesday now. Arrived in 4 days just like yours Kbeee,,

Kbeee did they give you a way to track your return package? I just want to make sure they get it back. Maybe they send a confirmation? I'm interested to know how both of ours turn out.

It's on it's way. Well it's at the Postal Annex, guess no mail action today

Kbeee nothing yet? I'm looking at March 10 (3 weeksfrom today).

It does seem they've found something. In which case it would have been better to know before your long history of treatments. I'm waiting with baited breath!

If you want you can email them - there's a place for that at the site.

thanks. I already know of a BUS in cheek 2, but I did not have full panel testing; they only tested me for that one variant as part of family testing. Wondering what else they've found???!!!!!!! Either way, it's better to know

Kbeee you are almost into DOUBLE TIME!!!

I agree, no news in this case is not good news but MAYBE it just fell through the cracks? You can email online and say "hey where's my stuff"? Then they'll have the weekend to find it!

Wow! That's a long time! Did they have a reason for the delay? I know they were very new then

wow! Monday will be 7 weeks. I will e-mail them to check status if I do nothear anything.