Any FANCM Triple Negative Breast Cancer Gene sisters?
Good afternoon!
I and my daughter both carry the FANCM TNBC gene. I’m a breast cancer survivor who was diagnosed in 2011 at age 43. I had a 1 cm DCIS, Stage 0, Solid/Grade 3 tumor and a subsequent bilateral mastectomy.
In 2011, the only recognized breast cancer genes tested were BRCA1 and 2, and TP53 which were obviously negative for me.
Just wondered if there are any other women who share this gene and what you did for treatment. I’m thinking about having a prophylactic solpinga-oopherectomy to limit the chance of ovarian cancer as well.
Daughter isn’t quite 30 but her doctors now are taking her screening seriously.
All the best to you!
Mom of three
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Hi @m0m2three ,
Thank you so much for sharing this. There’s really a lot of thought and care in how you’re approaching this, both for yourself and your daughter.
It’s amazing how much genetic testing has expanded since your diagnosis in 2011. Many people are now finding out about genes like FANCM that simply weren’t part of the conversation back then, so you’re definitely not alone in trying to figure out what it means and what to do with that information.
You may or may not hear from others here with the same gene, but there are quite a few members navigating newer or less common genetic findings and making similar decisions around screening and preventive surgery. These choices can feel big, and many people find it helpful to talk them through with a genetics specialist or a care team that can look at the full picture—personal history, family history, and risk tolerance.
It’s really encouraging to hear that your daughter’s doctors are taking her screening seriously at her age. That kind of proactive care can make a big difference and often brings some peace of mind. So important.
If anyone here has experience with FANCM, hopefully they’ll jump in and share. In the meantime, you’re asking thoughtful, important questions. You’re not alone in figuring this out. Please let us know any updates. 💛
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You’re welcome. The other reason that knowing you have this gene is because it affects what chemotherapy can be used to treat it. FANCM gene renders certain types of chemotherapy as dangerous/toxic to the patient.
I would advise any woman with ER/Pr- breast cancer to have genetic testing because her treatment needs to be adjusted accordingly.0 -
For those who are high risk due to genetics, the following screening is recommended:
For all these reasons, it is believed that subjects at high family risk require an intensive surveillance protocol, even taking into consideration the suggestion for more expensive diagnostic techniques in both “economic” and “risk” terms, meant as FPR increase (e.g., use of breast MRI). The proposed surveillance protocol for these subjects is as follows:
- between 18 and 25 years: self-examination every 3–4 months and senological visit.
- between 25 and 30 years: six-monthly clinical visit, six-monthly breast ultrasonography, and annual MRI.
- between 30 and 35 years: six-monthly clinical visit, six-monthly breast ultrasonography, annual MRI, annual digital or very low dose mammography (overall average glandular dose <4 milli Grays [mGy] = only oblique), and six-monthly gynecological examination + TVUS and CA-125 marker dosage.
- between 35 and 50 years: six-monthly clinical visit, six-monthly breast ultrasonography, annual digital or low dose mammography (overall average glandular dose <8 mGy), annual MRI, and six-monthly gynecological examination + TVUS and CA-125 marker dosage.
over 50 years: six-monthly clinical visit, annual standard mammography, breast ultrasonography (based on the radiologist’s advice), annual MRI, and six-monthly gynecological visit + TVUS and CA-125 marker dosage.
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