How to Make a Tough Medical Decision? My Risk-Analysis Dilemma for Ovarian Cancer Prevention as a BRCA1 Carrier

*The data and calculations in this article are not a medical recommendation; it only represent my thought process while making a tough and personal decision.

I’ve been sitting with a big, heavy decision lately—one of those “life-altering, no-perfect-answer” decisions. I’m BRCA1 positive, which, if you’ve read my previous post on the subject, I decided to go through a risk-reducing double mastectomy last year. But does that mean I can now rest assured I’m out of the woods? Sadly no. There are more cancer risks involved that require a lifetime of surveillance, but the second major one, except for breast cancer, is Ovarian Cancer, with a lifetime risk of up to 50%. And the general medical recommendation for BRCA1 carriers is: remove your ovaries and fallopian tubes by age 40.

But here’s the thing…

I’m 39 in a few months.

And that recommendation isn’t as clear-cut as it seems—especially when weighing different aspects into the calculation.

So I did what I do best: a little math. A little overthinking. A little inner negotiation with my body, science, and sense of self. And I’m writing it all out, in case you’re in this same strange boat.

What the Stats Say

Lifetime risk for BRCA1 carriers: Up to 50% for ovarian cancer.

Risk by age:

Risks of Breast, Ovarian, and Contralateral Breast Cancer for BRCA1 and BRCA2 Mutation Carriers, 2017 (Click on the image for the source)

• At age 38: ~1%

• At age 40: ~2%

• At age 50: ~10%

The risk jumps around 40—hence the guideline. But I wanted to understand whether it makes sense to remove my ovaries now… or wait just a little longer, knowing full well the consequences.

Because this isn’t just about cancer risk.

It’s about early menopause—and everything that comes with it.

What’s at Stake with Surgical Menopause

Removing my ovaries would trigger a surgical menopause, which is the worst type of early menopause (because of the abrupt, extreme change in hormonal function). That means immediate loss of natural hormone production from the ovaries (responsible for numerous hormones). Even with the best available Hormonal Replacement Therapy (HRT), it still means some of these risks and symptoms might be triggered early in life, reducing quality of life (there’s a lot of research, I liked just a few sources here):

  • Increased risk of osteoporosis and cardiovascular diseases
  • Increased risk of stroke, Parkinson’s disease and dementia
  • Increased risks for mood swings, depression, anxiety, cognitive decline, and memory loss
  • Lowered rate of metabolism, bloating and gut health decrease
  • Increased joint pain, wrinkles and thinning hair and skin
  • Lowered sex drive and libido, increased pain with intercourse, vaginal dryness
  • More frequent UTIs and incontinence
  • Hot flashes, insomnias and excessive sweating
  • Risks and side effects of using the HRT

Yikes. These may not kill me as fast as ovarian cancer but each one can impact my quality of life significantly.

Every month I don’t remove my ovaries feels like a month of keeping my brain, bones, and body function intact, reducing those risks of decreased life span and quality of life.

So what’s the tipping point? When does the benefit of reducing cancer risk outweigh the cost of all the rest?

Protective Factors That Shift the Equation

This is where it gets more nuanced—because not all BRCA1 carriers are the same. Here’s what lowers my risk, though it’s important to remember it’s impossible to rely on these numbers as an accurate statistic:

  • Birth Control Pills

I was on the pill for over 15 years. Research shows this may reduce ovarian cancer risk for BRCA1 carriers by up to 50-60%. If my lifetime risk was 50%, it might now be closer to 25%.

  • Breastfeeding

I breastfed for six months, which is also linked to reduced risk—though the percentage isn’t clearly defined.

  • No family history of Ovarian Cancer

This may be due to the fact that I got this gene from my grandfather’s side and thus we have limited information, but still it’s important information to consider.

The Fallopian Tubes Connection

Recent studies show that many (if not most) ovarian cancers actually start in the fallopian tubes. In risk-reducing surgeries, early-stage cancer was found in the tubes in ~50% of cases. So what if I remove the tubes first, and delay ovary removal? The research on this approach is still in process and hence not yet provided as a guideline for carriers. But I want to explore this option nevertheless.

💡 What if I remove my fallopian tubes soon, and postpone ovary removal by a few years?

That way, I reduce a significant portion of my risk, while giving my body more time to produce natural hormones.

But here’s the catch: there’s no solid data yet on how much this approach is effective for BRCA1 carriers. Still, intuitively—and individually—it could be just right for me.

An ongoing study, TUBA-WISP II, is looking into that approach as a possible option for high-risk individuals (click on the image to check out their website).

Putting Numbers in Perspective

Let’s look beyond BRCA1 for a second:

General population lifetime risk of ovarian cancer: ~2%

Between ages 35–45, only ~6–8% of those diagnoses occur

That means a woman with no genetic mutation has about a 0.16% chance of being diagnosed with ovarian cancer by age 45.

Me, on the other hand?

Even with birth control factored in, I likely have a 5x to 10x higher risk in the same time frame.

That’s significant.

But If removing the fallopian tubes ASAP brings this down to 0.5%-1% risk to be diagnosed with Ovarian Cancer before I’m 45, it might be a better call.

What I’m Deciding

So here’s where I land:

• Removing ovaries now could cut my risk significantly (but still not bring it down to zero)—but it comes with a high cost to my health and quality of life.

• Removing fallopian tubes soon might give me a middle ground: reducing risk without entering menopause, and reassessing in 3-5 years.

• There’s still so much we don’t know—especially about how protective factors shift the risk graph over time. In 5 years the picture might be clearer and there might be better HRT options, and that’s not nothing.

I’m trying to optimize risk and benefits, not just follow a one-size-fits-all recommendation. And honestly? That’s the hardest part. There’s no clear path. Only personal calculus, shifting research, and gut instinct.

What do the Doctors Say?

Different doctors have different approaches and they are generally very cautious to recommend anything other than the official guideline. But they do recognize how tough and personal this decision is, and how different factors have different weights to women. I just had a consultation with an onco-gynocologist who came in highly recommended in the BRCA community. I shared my dilemma and my thoughts about the middle ground approach. We openly discussed the risks involved, and he chimed in on the decision. I ended up deciding to split the surgery into two stages: start with just parting with my tubes for now, and checking in about my ovaries again in 2-3 years. I’m relieved to have made up my mind, backed up with who seems to be a knowledgeable and sensitive surgeon.

The Bigger Picture

What makes this even more frustrating is that women’s health—especially long-term data on BRCA mutations, hormones, and early menopause—is still hugely under-researched.

If this were a male health issue, would we have better numbers by now? Probably.

So we’re left to do our own math. Run our own experiments.

And share them—so the next woman doesn’t have to feel quite so alone in the fog.

This isn’t a post with a clear answer.

It’s a reflection from where I am right now, in this in-between phase of this journey.

If you’re in a similar place, whether BRCA+ or just navigating a big health decision, know this:

You’re allowed to dive deep and question the default path.

For more resources on the subject, read here.

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