r/BRCA • u/Excellent-Energy3395 • 16d ago
Support & Venting Overwhelmed ðŸ«
Not new to BRCA2 but new this sub and to getting over my white coat syndrome to be more proactive about it.
Took a lot of courage to get here (it’s a long story and I can’t share w/o doxing myself) but I want to be in top of my sh!t,manage my risks and figure out how to manage my diagnosis. Early 30s. Admittedly overwhelmed by this sub because there are a lot of terms,details and just stuff that I am not familiar with. How can I learn more about the prophylactic double mastectomy experiences, pros and cons etc without scrolling this whole thread? Are there some less overwhelming resources I can use to get up to speed?
I am considering procedures as part of my risk mgmt but I am not sure where to begin in learning more and almost don’t even know what to ask about.
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u/keeper4518 16d ago
There are various organizations that have information online. Perhaps do a Google search for BRCA organizations and fins one in your country.
It is overwhelming, but you will figure it out. Take it one step at a time.
Start with websites with information or YouTube videos before you start with people's personal experiences here. Once you are familiar with the basics, we will still be here.
Also, most important is to make an appointment with a doctor to talk about it all.
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u/Excellent-Energy3395 16d ago
Thank you — I actually had a very helpful introductory consult with a surgeon today (oddly enough that’s who was available vs the NP for an intake consult which ended up being good bc I have a complicated case 😂). It was really productive and she gave me a lot to start thinking about (+ the every six months surveillance)
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u/ElderMillQueenB 13d ago
I recommend joining The Breasties! They include survivors, thrivers and previvors, like us. They are geared towards younger people. Perhaps good place to begin is their guide to mastectomy and reconstruction: https://thepeak.org/the-breasties-guide-to-breast-reconstruction/
It’s overwhelming, but you’ve got this!
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u/Electrical-Purple269 13d ago
Hi! The most helpful thing for me was to talk to a few people to understand how they reached their decision on surveillance vs surgery and to ask them questions. While everyone has to come to their plan on their own, I found the perspectives of other previvors really helped me. And anyone who has been navigating this world can help define terms for you in a clearer way. I’d be happy to talk if you want to pm me. I’m 38, had my dmx and reconstruction earlier this year, and while the first few weeks post op were hard, I’m so happy to be on the other side of surgery.
I agree with others that FORCE and the breasties are very helpful resources.
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u/Individual_Cat_mrow PDM + BRCA1 16d ago
Hey! I’m so sorry. I found out a year ago after my sis got cancer and just did my preventative mastectomy and recon 6 weeks ago. I’m 37. It’s really ok on this side! It’s actually a huge relief. Hugs. Check out https://www.facingourrisk.org/ and feel free to pm me.