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Topic: NBN Positive at 23. Any advice appreciated!

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Mar 28, 2019 08:27PM

heykylee wrote:

Hi everyone, I'm Kylee, 23 years old. This week I got my Myriad results back and tested positive for NBN gene mutation. My mother and aunt are both survivors of cervical/ovarian cancer. No family history of breast cancer that I am aware of. I have dense breasts and unusual pain in my breats. I'm kind of at a loss of where to go from here. My OB mentioned that many women with this same gene mutation have BMX. But my question is, am I too young to even be considering this type of major surgery? I do not have children yet and don't want to short myself from the experience of breast feeding and such. However, I also don't want to put myself in a situation where I'm older and wish I would have taken more "extreme" preventable measures. I meet with my genetic counselor this coming week. I'm hoping this appointment may give me some clarity. Any thoughts or advice is greatly appreciated!

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Mar 29, 2019 05:09AM Salamandra wrote:

Hi heykylee,

I'm sorry you have to be facing these questions. Also it's amazing how much more information we can have about our bodies now.

I think you will get a lot of clarity and help from the genetic counselor. They should be able to give you an idea of what the prognosis is with keeping your breasts. I'm not familiar with NBN but when I was tested for BRCA, the genetic counselor told me that many young women were choosing to keep their breasts but do a more intensive surveillance program, with regular MRI screening, and that at that point in the research the outcomes were equivalent to women who had prophylactic mastectomies. That was years ago, and I'm sure there's even more and better information now that the genetic counselor should be able to share with you.

One thing I'd ask her or a doctor about is getting a hormonal IUD. It's one of the few things that seems to offer a slight reduction in risk of ovarian cancer over the long term. That's one of the reasons I kept mine in even after my diagnosis, although my doctors were wary about the impact on breast cancer. But I figured, there's no good evidence it increases the risk of breast cancer and there is good evidence it decreases the risk of ovarian cancer. Ovarian cancer is generally much scarier, I think. What a blessing that your mother and your aunt both survived!

Other than that, maybe bring a friend or have a friend listen in and take notes during your appointment. That way you can be fully focused on the counselor and not worry about remembering every single thing. Also, ask her what to do if you think of questions later, whether you have access to follow up appointments with her, or someone else, and how to do that. I think it's really common to need some time for the information to sink in and all the questions to rise to the surface.

I don't think you're too young to be considering prophylactic mastectomy. I think it's really wise to go in with all options on the table, no matter what your age. But I know for me, one of the reasons it was at the forefront of my head was just because I wasn't really familiar with the other options, and it turned out there were some good ones.

Best of luck, and I'd be really curious what the genetic counselor says, if you don't mind sharing later.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Mar 30, 2019 10:59AM vlnrph wrote:

Check out the FORCE website. Originally started by those with BRCA concerns, they address a wide area of issues. Also consider joining the PROMPT study, a consortium of leading research universities which pool data in order to eventually develop treatment guidelines.

Keep in mind that the vast majority of cervical cancers are viral in origin and you are not too old to get the HPV vaccine. Gardasil is a brand name to look up. Also, with smaller families in recent generations, some breast cancer mutations can hide for years, being passed through male ancestors. “Female problems” may not have been talked about and death certificates don’t list all contributing causes.

Salamandra has good advice and your genetic counselor will hopefully turn out to be an excellent resource.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Mar 30, 2019 05:16PM heykylee wrote:

Thank you so much! I’ll keep you updated on what the genetic counselor says.

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Mar 30, 2019 05:21PM heykylee wrote:

Thank you for replying! When I was in my teens, my mom made sure I received the Gardasil shot as a precaution to our family history. I’ll look into FORCE and PROMPT. Again, thanks for the recommendations!

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Feb 7, 2020 12:24PM kfpinney wrote:

Hi there,

I also am an NBN positive 35 year old. Do you know which specific NBN mutation you have? It should say some numbers and letters after your mutation on your results. For instance, mine is c.698_701delCAA

This actually has some weight in risk assessment. NBN is a fairly new mutation in the way they don't have a lot of people known with this. I actually work in breast cancer surgery and reconstruction as a Physician Assistant, and I have done a fair amount of medical reading to also help support my future decisions. I would be happy to chat with you!


-Kaitlin

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