DCIS ER-/PR- ; just diagnosed and concerned about BRCA

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Lisaloup
Lisaloup Member Posts: 4
edited December 2018 in DCIS (Ductal Carcinoma In Situ)

hello all

I was just diagnosed at 47 with DCIS hormone receptor negative. My grandmother had bc in the 70's. And my mom is no longer around for me to ask questions. I have 3 young daughters and I am terrified I have the BRCA mutation. It will be 2-3 weeks before I get a result from the genetic testing and I have been up all night reading about BRCA and the Close affiliation with er negative/pr negative. May I ask what you have found about the link between hormone receptor negative and the link to BRCA? I have found that as much as 97% of BRCA has a hormone negative receptor . But do most er-/or/ have BRCA ? That’s what I canfind and I desperately would like some feedback on this. I am a strong professional woman and mom...- and this has brought me to my knees.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2018

    I think it's something like 70% of TNBC is related to BRCA mutations, and 30% not. I have TNBC with no BRCA mutation. I do have an unknown mutation on one cancer-important gene (TP53) -- apparently it is extremely common to have mutations on this gene when you have breast cancer.

    Interestingly, even though I did not have a mutation on BRCA, I was prescribed a chemo that BRCA people often get (Taxotere/Carboplatin). Apparently some portion of non-BRCA cancers are "BRCA-like" or "basal like" and respond well to the same chemo. Mine did!

    It's a little confusing. Try to take the crises one at a time! You may or may not have BRCA -- and I hope you don't, as the recommendations will be more severe (MX vs lumpectomy, etc). But even if you do there are some very effective treatments for TNBC, and TNBCs have higher rates of complete response to chemo. If you are stage 2 or later chemo comes first, and you have the ability to see if it is working by watching the tumor shrink or not.

    My advice is to hit it hard and look at everything you can do to make your system *unfriendly* to cancer. Diet is huge. There is some evidence that a ketogenic diet is a benefit w TNBC. But you have to be careful about not too much animal fat -- vegetable fat fine. Eat organic and low carb. Supplements are very important. Vitamin IVs can really help too. Exercise very impt. Look up "Life Over Cancer" by Dr Keith Block who is a cancer doc in Chicago. He does all the western medical stuff, but he also works with the patient's nutritional status, psychological stress, etc. I had a consult w him and followed his plan for supplements, exercise, etc. Just had surgery. Imaging shows no cancer, but pathology is the true test.

    You can beat TNBC! Hop on the "Calling all TN's" thread for a lot of wisdom and support.

    My best to you! You can do this and beat it!


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited December 2018

    This illness seems to have a way of getting into our heads. Give yourself a break - it's great to be strong but even better to be able to take breaks from being strong. This is so hard to go through, especially without our mothers.

    My colleague had the BRCA2 mutation and hormone positive cancer. I was convinced I would have some mutation because 100% of my female maternal relatives had breast cancer (albeit this is a low total number), but if I do, it's not one that any tests currently show. Even if you have the mutation, it doesn't mean that your daughters do though - remember, half their genes are from a whole other root. And even if you all do, prevention and treatment is getting better and better.

    This time after getting the diagnosis but before all the information is in is so so so hard. Can you get something from your doctor to help with the anxiety? A lot of us do. It made a big difference for me.

    Whatever it is, you are still a strong woman, and you will deal with it and support your daughters, and also model to them how being strong doesn't mean being invulnerable.

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  • Lisaloup
    Lisaloup Member Posts: 4
    edited December 2018

    Santabarbarian,


    This is most helpful. This is all very new to me so I have a question. If I am ERnegative/PR negative, am I automatically triple negative?

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  • TB90
    TB90 Member Posts: 992
    edited December 2018

    lisaloup: Sometimes it helps to see things as positively as possible. This is still DCIS, which is very treatable, regardless of receptor status. If the worst scenario emerges, you had a warning and opportunity to face this before it became much more of a threat. Some do find out much later. But you are not even there yet. This is so much to deal with but please try not to deal with more than you know. I was planning my funeral in the first few weeks before I knew it was DCIS and can laugh about it now. But I put myself through hell. All for nothing. Then faced a positive margin after mx. Another hell all for nothing really. As a previous poster said, you will get through this. And it is ok to fall apart a bit. But talk kinder to yourself. This may not be as bad as you are imagining. Take it from an expert. Lol. All the best

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  • MCBaker
    MCBaker Member Posts: 1,555
    edited December 2018

    No, I am normally negative but her2 positive. If you are dealing with pure dcis, HER status does not matter, because it is not significant until the cells mutate to permit invasive growth. Then, it is a matter of pure luck that it is caught early enough.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2018

    My mistake I thought you had been diagnosed TNBC. Her2 is the third "negative" - they would do a FISH test to be certain of Her2. If you have Her2 positive, Herceptin is a treatment that is open to you.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2018

    Sorry someone pm'd me to specify that DCIS is not tested for HER2. My mistake.

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