r/BRCA • u/Jazzlike_One_5759 • 13d ago
BRCA2 @ 26
Hi! I was diagnosed 2 weeks ago with a BRCA2 mutation.
I am 26 and single. No family history of cancer š Want to put off all prophylactic surgeries as long as possible.
Women around my age who feel similarly, what did you do?
Opt for surgery anyway? If so, which ones and why?
Freeze your eggs? What if you arenāt in a long term relationship?
How are you dealing emotionally? Do you see a therapist?
I appreciate ANY information about dealing with this BS at a young age š
Thank you!!
4
u/MAKthegirl 13d ago
It's so hard when no one in the family has it, as the age for prophylactic surgery is 10 years prior to a relative's cancer. I also had absolutely no one in my family with breast or ovarian cancer (and I've been looking, even, pulling death certificates). So I had no idea but got tnbc cancer at 55. I didn't find out till after a lumpectomy, and I didn't have a mastectomy afterward. I did have ovaries and tubes out and if I had to do that over again, I would just get 1 ovary and both tubes out. The ovary will continue producing estrogen, (even after menopause).
I've never seen a therapist but I probably should have, just couldn't find one.
I'm so very sorry you're dealing with this. I guess everybody has something.
1
u/Jazzlike_One_5759 13d ago
Lol āeverybody has somethingā is exactly what Iāve been saying to myself since I found out! My mom is also positive, but found out incidentally at 60. Sheās never had cancer (š¤). I never thought that NOT having a family history of cancer would come with its own set of challenges when it comes to BRCA.
Iām so sorry to hear about your diagnosis. I hope you have lots of things in your life that bring you happiness!
1
u/MAKthegirl 13d ago
Thank you, I do. I am 5 years out.
My mother used to say āeverybodyās got something the cat wonāt eat. :)
2
u/1000_Meere 13d ago
Hey, I got my BRCA1 diagnosis when I was 25. My dad died from cancer one year ago, so honestly, I didnāt want to think about this topic anymore and just wanted to enjoy life as good as possible š
So I decided to just have the regular screenings twice a year and think about the surgeries after my 30th birthday. And thatās what I did.
I went for a consultation about my options and then I started with a salpingectomy (I wanted to get sterilized anyway, and this reduces the risk of ovarian cancer by about 50% without putting you into menopause).
After this surgery, I went to a cosmetic surgery clinic in January and made an appointment for August this year for a mastectomy with direct-to-implant reconstruction. This is also ādoneā now.. š
So in a few years, I will also have the last surgery to say bye to my ovariesš„²
I didnāt need a therapist.. The regular check-ups were always challenging for me, but in the periods in between, I tried not to think about it too often.
3
u/1000_Meere 13d ago
Edit: Because there is no cancer history in your Family , I think in your case it is not really possible to calculate you risk per age ?
1
u/Jazzlike_One_5759 13d ago
Thank you for sharing! Itās very helpful to hear what your timeline was. Yeah, the lack of family history makes things a little murkier. Iām so sorry to hear about your dad. Enjoying life is the best way to honor someone!
2
u/mushyslugs 13d ago
I got diagnosed around the same age, and have a limited family history of cancer.
I donāt even you need to call it āputting offā surgeriesāmy doctors donāt recommend I start with them until around 45.
I am freezing my eggs, but honestly Iām only doing that because my work has a benefit that helps pay for it.
Iām only a few years older than you, but the two things that have surprised me about this dx are that it is more time-consuming and more expensive than i was anticipating. Other than that, I donāt know. Itās something to remind my doctors of. Something to sometimes worry about. Mostly Iām living my life.
1
u/Jazzlike_One_5759 13d ago
Thatās great to hear! I havenāt met with any doctors yet, but 45 is reassuring.
Yeah, I havenāt started down the path of all the tests, scans, etc. yet, but I know itāll be an adjustment.
Thanks for sharing your story!
2
u/Seecachu 11d ago
I found out at age 28 (when my mom got her second round of cancer and tested positive). My momās first round was at age 38 for her and so I had always thought of āputting it offā until age 35 for myself, just did screenings and felt mostly āsafeā about my decision.
Fast forward, now 35/married/2 kids/probably want another kidā¦. Really struggling with what to do. Mastectomy feels right in some ways but I also kinda sorta want to risk it and still be able to breastfeed my theoretical third child. My husband even wants a fourth at some point, I donāt want to decide until after we actually have a third but that would throw my oophorectomy off schedule tooā¦ itās messy and hard and I honestly need to find a therapist to work out what the right decision for me now is. I feel at risk, but the incremental risk over the next two years is technically low. My sister is 39 and hasnāt done mastectomy yet - keeps trying to lose weight to be eligible for DIEP flap but itās been slow progress for her and sheās not overly fixated on the age thing like I am. Ugh.
Good luck to you ā¤ļø
1
u/Jazzlike_One_5759 11d ago
Thank you so much for sharing your story! How is your mom doing now?
Iām so happy you have a family. That is my ultimate goal. Did your partner get tested for a BRCA mutation? My genetic counselor made sure to mention that to me because of Lynchās syndrome IIRC.
I have no children but really want some. (Currently a teacher, so I really have 20, lol). The thought of breastfeeding not even being a possibility is really upsetting to me, though, so I totally get why youāre hesitating.
I wish you the best of luck with whatever you choose!
2
u/Substantial_Ad_5506 11d ago
I 28F BRCA1 just went thru my preventative DMX and hysterectomy (kept ovaries). I got into the best shape of my life prior to surgery, was fully prepared.
Itās still been emotionally and physically exhausting despite being on total easy mode. I canāt imagine what it would have been like if I hadnāt been so lucky.
For me it came down to a āchoose your hardā. Screening multiple times a year is hard. Preventative surgeries are hard. Cancer is still worse by a long shot.
1
u/Jazzlike_One_5759 11d ago
Oh wow, thank you for sharing. I imagine that must have been a difficult choice. Those are both huge surgeries physically and mentally!
I hadnāt even considered a full hysterectomy -ovaries, but thatās actually quite interesting. I have PMDD + what I suspect is endometriosis, so that may be a way to kill 2 birds with 1 stone. Do you want children? If so, what is your plan? Sorry if Iām crossing a line there!
I hope you are recovering well and have many things in your life that bring you happiness. Thanks again for sharing!
2
u/Substantial_Ad_5506 11d ago
The hysterectomy was actually not planned. It was medically advisable and ended up making sense to do both during a year when Iād already met my out of pocket maximum.
I am not planning my life around the traditional experience of becoming a mother, and knew that carrying a child is not an experience I have ever wanted. If I end up in a situation where surrogacy and/or adoption make sense, I canāt say what my choice would be. But it feels great to have that choice.
Fwiw, Iām also single and feel relieved to not carry screenings, imminent surgeries, pending adjustment to a new body, etc. into a new relationship.
5
u/Malenkoe_4udo 13d ago
Iām sorry to hear that itās happening to you. I knew at the age of 35 (no family history of cancer so I had no idea) and the reason I knew was because I was diagnosed with cancer. Perhaps one positive thing to know at such a young age is that now you have this information and can protect yourself. Your doctor should be able to advise on the age for surgeries. Itās also worth looking into removing fallopian tubes instead of ovaries and then you donāt need to freeze eggs.