Color Genomics

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farmerlucy
farmerlucy Member Posts: 3,985
edited August 2015 in High Risk for Breast Cancer

I received my Color Genomics breast and ovarian cancer genetic test kit in the mail today. It is well put together and easy to follow. It has some important disclaimers about the whole testing process. I was looking for an affordable panel anyway at the suggestion of my onc so I'm very pleased this one has become available at the affordable price of $249. Finally I want to let you know that testers are offered the opportunity to speak to one of their board certified genetic counselors about their test results. I believe this service is free.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015

    I am going to ask the MO about this tomorrow. I think it makes sense. I tested high confidence negative for BRCA 1 but have recently become high risk for BC anyway. It's affordable enough at least although I'd like to know more about the reliability

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Thanks for the update, Farmer Lucy. As to the reliability, Mary Claire King is one of the backers and she is a woman of extremely high standards. I've already had my testing done so don't need CG's kit but wouldn't hesitate to use it myself. My only concern would be that I might screw it up.
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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015

    Just today I asked my MO about it. She thinks it's great and trusts it. She said same about Mary Claire King. I asked her if I should do it and she said no need because I am high confidence negative for BRCA 1. Hope she's correct

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


    Cool, going to order tomorrow. I wanted p(t)en,chek2, p53 done for awhile. Already know BRAC neg.Thank you FL, sassy.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Ddw-BRCA1/2 ane not the only mutations that contribute to bc risk. PALB2 and several others can up both risk of initial dx and of recurrence.
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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015

    Yes I know. I am in the usual BC quandary here because my family's BC is clearly due to BRCA 1 but not so mine. And would treatment decisions change based on these other low penetrance genes is my question

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

    Dd thanks for relaying what your doc said about the test. Also very interesting re: family genetics.

    Hi Hopeful! Hi Sassy

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Ddw - your treatment and, especially, follow up decisions certainly could change. Mine did.
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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015
    Yes indeed. Not sure what to make of all this genetic info in my case anyway. It's all so unclear to me. Would definitely test using this method if BRCA 1 status was not completely clear in all of the breast and ovarian in my particular family . Super high penetrance in my family but BRCA1 clearly responsibl
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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Hmmm. That is an interesting situation, isn't it, Ddw? Just because I'd rather know as much as possible, in your shoes I'd probably test (or ask for the extended panel from Myriad) but that's such a personal decision...
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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2015

    Ddw - Here's a thought - it you did the Color Genomics and the brac was still negative you would have an independent confirmation of that plus info on the other 18 genes. I'm guessing your original testing was flawless, but us BC ladies do tend to become a bit paranoid after all our testing . . .

    My DIL's mom is brac1+, DIL is not. DIL is still in her 30 thirties so all of her high risk screening has come to a halt.

    I saw on another thread that you had a recent dx of ADH. My initial dx was ADH and ALH. My BS said if I had simply had ADH he wouldn't be that concerned but the ALH was more concerning because it can be a marker for BC in both breasts. I had second and third opinions in my journey. It was quite helpful and like Rita Wilson I recommend it.

    Best of luck. I know this is all so disconcerting.

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

    Hi farmerL, I was going to order the lit, then decided to go through my PCP. It's hard to wait b/c it will be about 3 months with working towards insurance approval. It'll be interesting to see if I can be patient that long. My BRCA's are negative. But I've had Thyroid cancer and a meningioma. PTEN and Chek2 look interesting. My thyroid doc discouraged testing, but my gut says further testing is important. Sounds awful, but I feel like I'm collecting cancers.

    There was a thread here that listed all the different genetic tests with the different cancers that occur with those genetic flaws. It was a very nicely compiled.  I can't find the thread now. 

    There is a relationship between the three occurences that I've had when I do a google search.This is a Yale study.

    http://www.medscape.com/viewarticle/765236Another

    study showing an increased incidence in thyroid cancer after BC. Excluded in the study were women that developed Bc after thyroid cancer, but didn't say why.

    http://www.medscape.com/viewarticle/841078

    This study discusses a link in developing other cancers

    http://thyroid.about.com/od/thyroidcancer/a/secondcancer.htm

    The cost of the Colors testing. Is a weekend out at a hotel and a dinner. Going to be tough to wait for insurance coverage.

    LUCy, did you order the Colors kit yet?


     

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

    Lucy. ADH? ALH? Lazy I could look them up, but...............

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

    https://www.myriadpro.com/myrisk/why-myriad-myrisk...

    Sas - this may be the table you were looking for. My kit arrived in about a week and I returned it the next day. I hope you can get approval re: insurance. My last two panel submissions were DEnied. ALH = atypical lobular hyperplasia , ADH = atypical ductal hyperplasia. That and my shaky family history prompted me to get the PBM. The rest is history! Take care

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2015

    thanks Ms Lucy. I may still do the Color genomics. I think it's a good idea even if the doc doesn't think it's necessary. I was one of the first ten people in the U.S. On the original study for BRCA 1 here in Boston. It took more than a year to get my test results back so when I hearsisters here complaining about how long it takes to get these results, I just have to chuckle.


    I'm taking the Rita Wilson approach too. I'm getting a second opinion from the same doc I saw originally 20 years ago for the BRCA 1 testing. It is my understanding that the ADH and ALH confer the same risk of bc in either or both breasts. It is really daunting. I also have so many other diseases that my limited options here are even more limited

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

    Ten weeks in and still waiting for my results from Color Genomics (they said 6 to 12weeks). Anyone get their results yet?

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    wow so hard to wait. Took me at least a year with Brca1 but now I don't think U could be as patient . Keep us posted.

    Greased to Surgeon to discuss PMX next week

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  • mkkjd60
    mkkjd60 Member Posts: 583
    edited July 2015

    Thank you for this info, Farmer. I just ordered my kit. Mom passed of bc two years ago and tested negative for brac 1 and 2 and bart. But didn't have the other markers/identifiers tested. I've had two biopsies already and want to make sure for the sake of my daughters that nothing is looming genetics-wise. This is one of the main reasons I joined this site - for the sharing of important info.

    Once again, my thanks. Mary

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

    Dd - good luck w the surgeon. It is a tough decision but sometimes necessary.

    Mary - Sounds like we're in the same boat. In some waysI hope I do have a mutation that DD does not.

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  • mkkjd60
    mkkjd60 Member Posts: 583
    edited July 2015

    Farmer, Since I've ordered the Color Genomics today, I have been on edge all day. You know- when you really need to know for yourself and so many others but you are afraid to know. It's almost making me sick thinking about it. Bringing it all back with my mom. She suffered so. The loveliest person in the world. So undeserved in every way. I spent two years taking care of her. Can't shake it. I'm praying that it was sporadic. She was a long time user of hrt (12 years!) beginning about 25 years ago when they didn't know a thing about it but gave it out like candy because it would "give you strong bones". My mom never questioned doctors. She was from that generation that trusted them no matter what. Not this girl! I do my own research, make my own decisions. Hence, Color Genomics. Time for us to take control. Hugs. Mary

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

    I hate that so many cannot escape the shadow of this beast. I was 5 when my mom passed from it so I lived under it most of my life. The surprise dx after my Pbm threw me into full blown PTSD. The funny thing is that my dx and subsequent melt down left me stronger than ever and I don't really fear the beast for me. However - the thought of my DD facing it is horrifying.

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  • mkkjd60
    mkkjd60 Member Posts: 583
    edited July 2015

    Oh my gosh, Farmer! You were just 5! How awful! Your poor mom to have missed so much. My mom got it at 66 and passed at 73. But for so many years she had the adh and lumpectomies. I wish she had been more aggressive. I've learned a lot through all this. I can just imagine how shocked you were to have gotten that dx after thinking you were way ahead of it with the pmbx. I think none of us really knows what lurks beneath...even with all this testing. I get a mammo and mri yearly and I have to drug myself up with Xanax just to go for those tests. I think us daughters will never get over feeling that we are being chased...no matter what we do. I think the difference between our moms and us is that the technology is letting us stay on top of it and take it into our own hands. Would you be willing to share with me how the recovery was after the mx? I have often considered it and sometimes I'm just so tired of the tests and the furrowed brows. Mary

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

    Mary - so funny you mentioned being chased. That was the one thing I sobbed about to the poor onc's nurse that first visit. I said I'd thought I had outrun the beast.

    The Mx was not a big deal to me. I never once lamented the loss of my breasts. Recon was tough for me but doable.

    Take care and keep in touch

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

    Mary, hugs sorry you are going through what you are going through. Hope we can talk more.

    Lucy, did they find the BC when they did the PMX? I missed that before-----or forgot. I was in the pipeline for approval of PMX when BC was found. Are you going to post your Colors test here? When they send the kit do you pay up front or when the test is returned?

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

    Sas - Yep in the final pathology and only upon microscopic examination. Nothing seen or felt at histology.

    You bet I will post results. I'll even scan a pic of them to compare to those from the other labs. You pay when you order the kit
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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Lucy, the sequence on mine was >>mammo in August 2008, NED>>>MRI in Dec 2008---bingo signet ring clear as day>>>>>BX Jan 23rd, grade 2 (6)>>>Bmx Feb 18th 2009, grade 3(8). I was lucky, very aggressive. If I hadn't been in the pipeline, I would have had the next routine mammo the next August. I can only surmise, but to move that fast in three weeks..................

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    Planning to order the Color test in Monday. My only concern is what to do with info when it comes back. Also how docs will consider it . Wonder if they will just blow it off because they don't trust it.


    Any news Farner? I know how hard it is to wait.


    Wishing good wishes to all who wait

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited July 2015

    Hi ddw, I saw your other post and suggested there that a session with a genetics counselor might be useful in your situation. How interesting that you were in the original BRCA group so long ago. I understand that there is another kind of analysis, rearrangement testing, that might provide further information. Have you had that?

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  • Ddw79
    Ddw79 Member Posts: 533
    edited July 2015

    thanks vlnrp I did meet with Genetics Counselor again last month . No suggestions since original BRCA1 was negative over 20 years ago. That's a long time ago and things have changed. I have had no new testing but it does seem worth it to have this color test done. I was just wondering if others had experience with i

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

    Nothing yet. It'll be twelve weeks at the end of next week. I see my onc in mid August so I hope I have something then. If neg I'll let it go. If pos I'll talk to my onc. Could retest individual genes with Myriad to validate.

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