BRCA in your twenties (or close enough!)

mky

Insight from all ages is welcome!

This topic is for those of us facing BRCA during the decade of our lives where we're told to enjoy ourselves, take risks, try new things. Have fun. Whether you're still in school, unemployed, or working your dream job; single, dating, or married; have children, want them, or would rather be without... I want to hear your thought process.

[ABOUT ME: (sorry for the length)]

I tested positive for BRCA2 the summer of 2012 when I was turning 23. I was living in Japan at the time and would be for another year so I spent it researching. (I knew that I'd never feel comfortable seeing the doctors in my small rural town while brandishing Japanese that was nowhere near medical fluency).

It was a tough year and despite knowing immediately that I just wanted them off, until Angelina Jolie came out with that article, it was fairly difficult to find information/instances of people my age getting it done.

I arrived back in California last August and quickly got my unemployed self back on my parents' insurance plan. I had no fewer than an appointment every few week until November when my PS and BS gave the okay for a prophylactic BMX w/ reconstruction. Getting to that point was mentally exhausting. At first no one seemed to really believe that I knew what I wanted in life or what prophylactic surgery would mean for someone who hadn't yet had children (in my case having biological children had never been a priority for me and adoption has been something I've always leaned towards anyways).

Everything ZOOMED by after that. I had an MRI on New Year's Eve, got a call from my BS the morning of Jan. 7 to discuss results & set a follow-up appointment with my PS (we had decided on a staged mastectomy where stage one was a straight-up breast reduction & lift with stage two being the full mastectomy and direct-to-implant reconstruction). But then later that same day BS called back and due to a cancellation in my PS' schedule my breast reduction was set for Jan 14th. ONE WEEK LATER!

While the decision for PBMX was fairly easy for me and I know I won't regret it, I still feel anxious everyday I put off the job search. 

I know that my health and mental well-being should come first, but it's been awful feeling like I'm lagging behind everyone else in my generation who have their careers all sorted out. I've shrunk away from the local social scene b/c I've gotten so tired of hearing barely-friends ask me how the job search is going b/c I don't want to explain my situation.

It doesn't help that my BS/ob/gyn/genetic counselor are all pushing single-and-unemployed-me to have kids ASAP b/c when I turn 30 they'd like to  start talking about getting my ovaries and tubes out.

But that's still ~In The Future~ so I think I'll get my life back on track after I get my perky new non-87%-risk-of-cancer boobs put in and work a bit on my resume before jumping back into the medical "upgrades".

geekyknitter

I'm a bit further along (36) and still waiting on my test results.  I kind of think that there is a reason I didn't hear anything about BRCA testing until my 30's.  I think I likely would have tested then if I'd known about it and it had been available, but I'm not sure I would have been ready for everything a positive result could entail.  Now, I'm 36, in great health, but I've also had 2 children.  I feel like a positive result now would be a bit easier to handle in that I could proceed to surgery with less fear of missing out on something.

At the same time, I struggle with the idea of going through menopause, even now at 36 as well as having to deal with scars and possible lymphedema.  I might have had another child, but a oopherectomy or hysterectomy would forever close that chapter of my life.  It sometimes feel like if I do get a positive result and proceed with surgery...like I'll be hastening growing older and giving up the last tie I have to my youth.  At the same time, if I were in my 20's, I would hate to risk NOT testing and not being able to catch anything before it began.  I can also relate to the thoughts of "I shouldn't be having to deal with this now!"  For me, rather than it being college or growing up that I wish I could be focusing on...it's my kids being young and my career, but I think the sentiment is the same...it isn't fair to have such weighty distractions.

I think it's great that you're facing this head-on.  There is also a forum on facingourrisk for young previvors you might want to check out, if you haven't already.    Big hugs!!!!

SAMYsMom

I was told I had BRCA1 in Sept 2001 at 29.  I enlisted in a follow up study that was designed to monitor those with the BRCA mutation. First day of that study in May 2002, first test was a mammogram, and guess what?  I had a malignant tumor. I opted, then, to have a bilateral mastectomy (on my 30th birthday, nonetheless).  At the time, I was single, no children, had just finished grad school, purchased my first home.  I truly thought I was getting in on these studies to stay ahead of game, not to be diagnosed at day 1.

Long story short, I am one of the few survivors that did not undergo chemo, although I was initially told I would need it. I went on to get married in 2007 and had two lovely children at the ages 37 and 39.  They are 4 and 2 today.  

Last summer at 41, I had a full hysterectomy to minimize the risk for ovarian cancer.  I won't lie...the hot flashes and insomnia are not fun, although I do think it could be much worse.  Because of other changes I have made, primarily in diet and exercise, I feel better at 41 than I did at 25, and have the blood work and lean body mass testing to verify I am in better shape.  Clean eating and CrossFit (although I know it is not for everyone) have really made all of the difference with respect to my mind and body.  I can keep up with my young children and I feel stronger physically and mentally.  

I am curious to know how you are both doing.  Thanks.

Moderators

Thanks for sharing your story. You may also find it helpful to read our sections that address this issue:

Prophylactic Ovary Removal

Warmly, 

The Mods

mky

geekyknitter: Thanks for sharing your story! I just headed over to facingourrisk and the young previvors forum was really helpful~

Rachel: It's honestly great to hear how fantastic you feel despite actually being diagnosed.

Mods: Thank you! Though I'm a bit confused by one section.

• "BRCA2 carriers: Ovary removal had great benefits in terms of breast cancer risk, but not ovarian cancer risk. [...] The study did not find a significant reduction in ovarian cancer risk for these women. BRCA2 mutations have not been found to play as important a role in ovarian cancer risk as BRCA1 mutations do."

I'm getting two interpretations:

1. Ovary removal in BRCA2 carriers does not medically decrease ovarian cancer risk
2. BRCA2 carriers are less likely to develop ovarian cancer than BRCA1 and so they shouldn't feel as pressured to have their ovaries removed

My BRCA2 mutation is from my mother's side and all of her family are in the Philippines & I've never really met them. Unfortunately, I heard that one of my cousins who was fairly young (either in her late twenties or early thirties) was diagnosed with ovarian cancer and passed away. Her mother had previously passed away due to ovarian cancer, though in her 40s.

So I'm not sure if the blurb above is saying that my BRCA2 mutation means ovary removal would not decrease my risk or if it means that usually BRCA2 carriers don't get ovarian cancer. It kind of sounds like both?

invisible

BRCA 2 is less likely than BRCA 1 across the entire population of carriers to result in ovarian cancer.  Since you appear to have a family history that indicates your particular defect is more active for ovarian cancer you may want to discuss this with your genetic counselor or doctor. 

ells37

mky, with BRCA2, your OC risk also depends on the location of your mutation on the gene.  There's an 'ovarian cancer cluster region' on BRCA 2.  If your mutation 'lives' there (for lack of better, more scientific jargon) then your OC risk is about equivalent to that of someone with a BRCA 1 mutation.  I apologize that I can't recall the exact positions of the OCCR, but I believe it falls in the 3000-6000 range.  My mutation is at 4075, and that's how it was explained to me by the GC.  Good luck with making these decisions, it's so hard, especially when you are so young!  I'm still doing surveillance (at 35), but I think I'm getting closer to opting for the surgeries.

You've gotten some great advice in all of the above posts, I have to second invisible's advice that you take all this to a genetic counselor.   

jcharles

hi I want to know if anyone knows the chance (as in percentage) of breast cancer coming back on someone whose tumor was estrogen positive but continues to take estrogen after going thru chemo?

Moderators

Hi jcharles, 

We are not sure we understand your question exactly. Are you still taking estrogen post chemo? Are you on Tamoxifen? As for stats, the best place to look it at the National Cancer Institute site. 

Thinking of you, 
The Mods