Brutal Real-Life Game of “Would You Rather”

Let's play a round of "Would you Rather"  . .  .  What if:

  • You had not only a family history, but an actual gene mutation (and unfortunately, not one that gives you superpowers) which means. .  .
  • You have about a 1 in 3  chance of getting a horrible disease (which are CRAZY crappy odds especially considering the way this disease usually goes).  
  • If it happens, it’s likely to be when you are still pretty young - because of your mutation.  AND. . .
  • There is NO GOOD TEST to catch said disease early - maybe you thought the worst-case was finding it “in time”. . . but then you find out . . .that even with the tests that are available . . . it’s very UNLIKELY to be found “in time”.   Most of the time, even with the tests - it’s found too late.  

There is a way to slash this risk - to reduce it 90%+!  PLUS this procedure would reduce your risk of another bad disease that you are much more likely to get - by up to 50%!   BUT. . . .

The way to mitigate this risk is surgical.   Any surgery is scary.  It has its own risks - even if most are unlikely -  including (these from the Mayo clinic’s site)

  • Bleeding & Infection (not to mention that small chance that you wont' wake up) 
  • Intenstinal Blockage
  • Damage to Internal Organs
  • With any surgery there is that risk that you won't wake up

This surgery also puts your body all-at-once into a state that usually it gets to gradually - not pleasant.  Including: 

  • Bone Thinning (osteoporosis) 
  • Hot Flashes
  • Sleep Disturbance
  • Occasional Cognitive Changes (?!?!? Say WHAT?!?!?) 
  • Increased risk of Heart Disease
  • Lingering Risk of Cancer - nothing is 100% right? 
  • Other "issues" - girl stuff

SO. .  . Would you rather live with the 1 in 3 risk of getting a heinous disease that will likely kill you early in life (no good early detection, no good treatment once found "too late") and live with the stress/worry/fear with every inaccurate test you do take. . . or do you risk the surgery and its aftermath. 

What?   Those are THE options?  No easy answer, no really great options, right?

Well, if you are part of the "lucky" few who are positive for a BRCA gene mutation. . . these are your current options regarding ovarian cancer.  These are MY current options.

I was feeling good about the testing they were doing for both ovarian and breast cancer.  Ultrasounds every 6 months for ovarian cancer felt like it MUST be worth something.  Still, my doc asked me OFTEN if I was ready to to have my ovaries taken out to dramatically reduce risk.  She kept telling me that ovarian cancer "will kill you" if you get it.

After a few years of this and after the many-ith time she asked me if I was ready yet. . . I finally did some more research.  Here's a quick summary of some of what I found and some resources.

Bright Pink - This organization gives tons of info and support for ALL: high risk - whether it’s family history, BRCA or other risk factors, and “regular” risk.

FORCE: Facing Our Risk of Cancer Empowered - Lots of really great information here too!

Of course there are many medical sites and articles out there not associated with a support organization. 

I like this one from Scientific American.  The point of it is that this surgery is NOT the right choice for most women, but for some (like Angie Jolie and me - ha!) it can be the best choice.

Removal of Ovaries, Fallopian Tubes Wrong Anticancer Option for Most: Angelina Jolie Pitt is part of only a small subset of the population at such high risk for cancer that doctors recommend preventative surgery

Here's a quick excerpt of into from the Mayo clinic: 

Surveillance for ovarian cancer with available tests has not been found effective in early detection of cancer, nor has it shown a survival benefit. The tests include having semiannual pelvic exams and yearly transvaginal ultrasound imaging and a blood test to measure your cancer antigen 125 level.
. .  .
Preventive (prophylactic) mastectomy — surgical removal of healthy breast tissue — reduces breast cancer risk for BRCA gene carriers by about 90 percent, according to several studies. Removal of healthy fallopian tubes and ovaries (preventive salpingo-oophorectomy) reduces breast cancer risk by as much as 50 percent in premenopausal women, and it reduces ovarian cancer risk by as much as 90 percent in both pre- and postmenopausal women.
Preventive surgery doesn't eliminate all cancer risk. It's possible for cancer to develop in any tissue that couldn't be removed through surgery.

Here’s a link to this page: Mayo Clinic BRCA Positive Information

Here’ s a starting point on the CDC site if you are interested: Quick Facts About Family Health History and Genetic Testing for Breast Cancer and Ovarian Cancer

National Cancer Institute: BRCA Fact Sheet

I also went back to talk to my doctor some more.  She said that she doesn’t even feel it’s really elective.  

She confirmed that the surgical risks are a LOT smaller than the risk of my getting ovarian cancer.  I knew this from what I had read but I guess I needed to hear it from her and FOR SURE my husband did.  He too thought that there MUST be a good test and that the worst case would be “finding it early”.  

Oh, and there's a great bonus of increased pancreatic risks (espcially since my dad had it AND was BRCA positive). . .. a story for another day  . . another cancer that doesn’t have a good screening available and that is usually found "too late"

So, my choice in this vile game of “would you rather” is surgery - for now surgery to remove my ovaries and fallopian tubes (bilateral salpingo oophorectomy).  I leave for the hospital in a few hours. EEEEEK!

My doc would “also support” (I kind of hear this as “suggest without actually suggesting) a double mastectomy but does understand why would would wait because at least there are better options for screening and treating (I’m on a whole testing regimen including Mammograms, MRIs and regular exams), and that may be something for the future, but for now. . .  I’m nervous about surgery and it’s potential consequences, but. . . I also want to do what I can to mitigate the big risks.

When you have held your dad’s hand in ICU and hospice, when you’ve fed him, listened to his hallucinations as cancer moved to his brain, saw his pain. . . etc. . . you get the idea. . . you want to avoid that for yourself AND I want to avoid it for my little sunshine-girl if I can.

I’ve also seen my aunt taken by an aggressive breast cancer.  She was so brave and fought so hard, but what she and my cousins and my uncle went through. . . UGH.   Also had to see breast cancer take my grandma and watch another aunt and cousin fight it.  It sucks.  Cancer SUCKS!!!

You can’t predict or control everything, but I feel like I’ve gotta try to do everything I can.