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Anxiety about upcoming mammo

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Kerin View Drop Down
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    Posted: Jun 26 2013 at 10:12am
I was dx 7/12 with 1.3 cm, grade 3, negative nodes. Had lumpectomy, AC/Taxol followed by radiation. BRCA negative but found a variant in Rad 51 C. My Mom is getting tested for this gene 7/19. Very strong family history (Mom, Aunt, 1rst cousin, great grandmother, 2 great Aunts and several of my Mom's cousins) However, the info on the significance of this genetic variant is slim. If she does have same variant, what would that mean? I know my genetic counselor will discuss this with me. It's been so frustrating waiting on genetic company to OK testing my Mom. So, i decided to just pay out of pocket for it. if positive, should i consider mastectomies??? Steve has been very helpful finding out some info for me about this gene. I need to see if my Mom has gene variant too before investigating this further. I still have my mediport. My oncologist said she recommends that I have it removed at the 2 year mark. It's been her experience that most of her pt. with TNBC tend to recur in this time frame. I have had a bone scan because I have had fatigue and achy legs, now hands since chemo ended in Feb. Scan was normal. As my mammo is coming closer (7/11), I find my anxiety about recurrance increasing. I would love a PET scan as I feel this would alleviate some of the anxiety but they don't do those as part of follow up here. I work out, do yoga, eat right.... Don't know how to alleviate this anxiety. Has anybody heard about The Block Center in Chicago? They have a very active "remission" program. Sorry this post is so long.
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Hi Kerin,

no need to apologize about the length of your post. You have a lot going on and it's good to get your thoughts out.

I would ask your medical advisors if they feel a Breast MRI might be useful in addition to a mammogram. Some insurance companies will pay for that if you are considered at high risk and with your TNBC diagnosis, gene mutation and family history I believe you would qualify. The gold standard for high risk women seems to be alternating Breast MRIs and mammograms every 6 months. And there are variations on the theme with some centers ordering Breast MRIs yearly or mammograms yearly but from what I have seen the 6 months alternating program is often used. Also, if you have dense breasts (no response required..just want you to be aware that MRIs are preferred in that case..but mammograms still used) Breast MRIs seem to be preferred even with the downside of false positives.

I have heard good things about the Block Center.

The anxiety you are experiencing is a natural, normal feeling in my view. July 11th will come and go and be , hopefully, uneventful and then you can relax a bit.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Kerin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kerin Quote  Post ReplyReply Direct Link To This Post Posted: Jun 26 2013 at 8:27pm
I believe I get mammo in July and breast MRI 3-6 months after that. It will alternate mammo/MRI. I will check at my next appointment. I had a breast MRI in Jan. before diagnosis which was normal, cancer was found in June. My cancer was only found by exam. It didn't show up on MRI, mammo or ultrasound. That's why I would feel more at ease with PET scan.
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