Color Genomics

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    long turnaround time .

    I'm going to order mine tomorrow .

    Sending you good thoughts and wishes

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Lucy, I bet the delay is b/c Colors is swamped. Their price is the draw. I shouldn't of hesitated. ReGRet that decision. Now need to wait till after August 6. Bummer

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    Ditto on the hesitation

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    MO finally agreed.

    I paid for the test today.

    I'm glad I did. I was hoping never to have to do this agonizing thing again but here I am 20 years post true negative BRCA 1 doing more genetic testing.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    Thanks Lucy

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  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited July 2015

    Hi. I am jumping in on this thread. I had the full genetic assay done upon the recommendation of my genetic counselor after I tested negative for BRCA. I sometimes wish I never received the results. And by the way, they took far longer than expected. Anyway, I have 2 mutations of NF1 placing me at higher risk for BC and several other cancers - leukemia, brain cancer and nerve sheath tumors. Here's the problem...there is not a darn thing I can do to reduce my risk for any of these and a diagnosis of leukemia, brain cancer and nerve sheath tumors is almost always a horrible prognosis. So, guess what? I have the pleasure of getting scanned for all types of crap every year or pretending like I never learned about NF1. I was very clear with my genetic counselor. If I am at risk for something and this knowledge will allow me to reduce my risk in some way then by all means tell me. But, if I'm only going to worry then I'd prefer not to know. She told me anyway. And so, I have this garbage to worry about in addition to the stress of BC.

    In looking at the Colors information posted, I noticed that NF1 is not included in the panel and I don't know why not.

    I'm just rambling with my 2 cents. I certainly hope everyone has favorable results and if not, then at least results that will enable you to make risk reducing decisions.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

    Hi WW. I can see how these results can bite us in the back. I'm not sure what good results would be for me. I guess in an ideal world I'd have a known mutation DD does not have. What a spider web maze this all is.

    May I ask why you had to have chemo? Was it your oncotype score?

    Girl - you have been through it with the recon. It it going ok now?

    Good to hear from you. I hope your summer is going well! Big hug.
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  • mkkjd60
    mkkjd60 Member Posts: 583
    edited July 2015

    Well I received my test kit from Colors and it has been sitting here for a few days and I have yet to move on it. Why? For the reasons that Warrior noted above. Will this just "color" my life in a gray haze of worry without any options to positively address the mutations? Will I just pay for the results with anxiety and grief over what I may get or, worse yet, my children?

    This is a tough one, girls. To test or not to test.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Warrior, I have a bad gene and family stats are off the charts. I'm an old nurse. Even though I don't know what genes, specifically, I have a plan.

    Every Jan. I line up all my yearly doc appointments. Reason: if something shows up, I work on it. I specifically don't have surveillance things done over the holidays. I did that with BC wrecked the holiday. I'm passed BC. Really glad I worked the problem when it occurred. I did a timeline for another thread. I will see if I can locate it and repost here.(decided it was nuts to do that)

    I have a surveillance plan. Each persons plan is different. I try to limit radiation exposure. CT scans deliver the equivalent of two hundred chest xrays. Each PET scan is started with a CT scan. Anyway an ultrasound or MRI can be substituted for a CT/PET is good to reduce radiation exposure.

    Learn about the condition. Work out a surveillance plan. Remember to reduce radiation exposure if you can. The line I use with the docs after they suggest a CT/PET, "What other diagnostic test can accomplish what we want with out exposing me to more radiation". We work it out.

    I can't prove it, but my Thyroid cancer may have been due to too much radiation exposure. World wide Thyroid cancer has dramatically increased. Particularly in developed countries. They're is SOOOOOoooo much surmising about the cause of this by the endocrine and cancer bigwigs. They postulate many reasons. The bottom line, it's unknown. If you see someone saying they know why? Uh-UH, it's going to take awhile to figure it out. Protect your thyroid in the meantime

    For you in formulating your plan, it's better to be aware of this, than not know.

    I came across a study on NF1 just the other day. Lord only knows where. I'll see if I can locate it, and bring it here.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    image


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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Image result for funny Gene cartoons

    Keep working the problem


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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    mkk, toughy. I'm here b/c of working the problem. I've lost another two cousins since I was dx'd and a third has a permanent colostomy b/c of colon ca. None were proactive like I was. With the family stats, they are somewhere, If I can find the list I'll bring it here. I was the seventh of 21 women to get BC. Two dx'd after me. Total 9:21 BC. Oodles of other types of cancer.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    Awful what you have been through and you have a good attitude. I admire your fortitude . My story is so similar . And getting more so daily. Hope I can come out in one while piece like you in awhile.


    Good wishes going forward. I can truly relate to all of your losses

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Dd thanks, I guess I want people worrying about a bad gene, to know they can do something.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Lucy my instincts are to delete those two long posts. They are not appropriate here. I'll link to where they are, if someone want's t read. Decided not to link, my story is so far to the extreme, it reads like science fiction. I don't even believe. Suffice it to say, I'm still here.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    Sheila, I agree with you. It's sobering to know one has a deleterious mutation but it does give one insight as well as, in some cases, the ability to deal with risk proactively. I happen to think we are best served by having that information, if we choose.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

    Sas - I think it is valuable as well. Your personal and family history are staggering. Here's to a better next six years. You are an inspiration on these boards and I'm always happy to team from your posts

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Farmer thanks, That's and overwhelming statement. Bless you, But that was just too much My Lordy. If you don't mind I will find an atrociously funny cartoon to lighten things up.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    Oh good - I ALWAYS enjoy your cartoons, Sassy!

    (I will second FL's sentiment, by the way.)


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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Hopeful, you funny girl....I'm sassy on the boards. Hopeful oh you gals

    Lucy, they aren't atrocious, but they work. I edited for typos and grammar. Lazy me, just deleted rather than back and forth.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    my story is pretty extreme too . All women in maternal line either breast or Ovarian. Before they tested positive , the two that survived, and me negative I had my ovaries out. That was twenty years ago and in the interim MS, Hashis , type 1 Diabetes in 6 shots of insulin a day, yearly hospitalizations for chronic Pancreatitis and now my negative BRCA 1 looks like positive something else. I thought maybe with the negative first round maybe I was too hasty having the prophylactic ooph but now I'm thinking that Im alive today , if not we'll, due to that ooph that seemed like it could have been nevessary. Sometimes I just can't believe or even bear my genes.


    Sas carry on . It's an incredible piece of work we are all doing

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

    Just got my results! No mutations found. The educational aspects of this testing were excellent and much more than I ever received in previous genetic testing. They force you to read background info and watch the informational videos before you get your results.It did take a bit over twelve weeks but I'm sure they were backed up. Overall I'm very pleased and it was certainly worth the $249.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    So glad to hear that your results were negative as well as that the educational materials were so thorough, too. It's very helpful that you've been so willing to share this process.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

    Thanks Hopeful - I'm weirdly ambivalent about it. Guess it is time to stop looking for "why" and move on. Hugs

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    I certainly understand that! While I was surprised to find I did have a mutation that's probably responsible for my situation, there was indeed a sense of 'o.k. - there's a reason for this' that helped me to come to terms with the dx.

    At the same time, I worry about my sister, although I do feel that knowledge of the mutation gives her a better shot at avoiding bc than I had.

    I think the "WHY" in your case is out there - we just don't know enough to recognize it yet.

    Hugs and support.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Lucy, all kinds of stupid comments apply. Won't try any. How do they force you to read the educational materials? Online? Money's still short(not real short, but not spending right now). The Colors list is pretty extensive. So, it's a good thing. I get that it'd be nice to have something to hang your hat on.

    With so many on my dad's side with cancer it has to be a bad gene. I think the number is 23:53 with a primary cancer. Some have had multiple 4:53(me included). It's into the next generation, he wasn't in the totals. He had 3 cancers, colon , kidney, and ?(forget). I have two cousins that are R.N.'s(me too). They deny that there is any connection.    ????

    So, what's your plan?

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    Wow Lucy

    You finally got it back and no mutations. That's good news I think.


    I just sent mine in on Monday. I'm looking at a long wait like you. So far I agree, this team has been very pleasant to work with.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

    I agree! I contacted them three times by email and they were very responsive! Let us know your results

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

    Hi Sassy (me waving). Technically I think you could fast foward on the videos but they are kind of entertaining with stick figures and such. They want to be sure one is well educated about what the results mean ex: no mutations does not mean you can't get Cancer. We here are pretty well versed in things like that but some people aren't. My plan? If I'd had a known mutation I prob would have drug DD in now (she's 25) to start MRI's or at least meet with my onc. Now I think I'll lay off the nagging til she's thirty. Who knows, by then the liquid biopsy detection may be the standard for screening. DD is an RN too! I so hate that it has hit your family's next generation. Take care!

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