The Life of A BRCA Positive Woman

Today's writing will be completed by AJ, the middle daughter.

It is impossible to hear the words, “You have around a 90% chance of getting cancer,” and not have it affect you.  For some BRCA positive people, they want to live in denial and not make any changes.  This is, in part, because the changes that are recommended are not minor.  Sometimes those in the medical community fail to lay out exactly what changes are and even the best ways to go about making them.  So, the result is that you feel like you are receiving bad news, then more bad news, followed by a sense of being overwhelmed by what it all means.  As someone who has been living with the weight of this knowledge for many years, I have some tips I’ve picked up in that time.

Also, I’d like to note for the purpose of this article I will use the word woman since I am a cisgender woman, but really I’m speaking about people who possess reproductive parts such as a uterus and ovaries.  While I do want to recognize those who are transgender and non-binary, I also want to make it clear that the risk is the same for all individuals who have these reproductive parts.

So Many Appointments!

As I’ve explained before, one of the first changes that is going to be made is the addition of many check-ups to your schedule.  There are some ways to make it easier to do screeners and, hopefully, not negatively impact your job.

1. Combine appointments if allowed.  See if you can discuss the results of the last lab-based screener (mammogram, MRI, ultrasound) and schedule the next one at the physical, doctor’s office screener.  If you follow the most common schedule, you’ll do a mammogram, get felt up by the doctor, MRI, and get felt up by the doctor as a rotating, 3 month schedule.  So, provided everything is normal, you can get it down to every quarter.
2. Take advantage of extended hours.  Some of my screeners, like my ovarian check ultrasound, was done in the doctor’s office.  Others, like my mammogram, was done at a lab clinic.  Oftentimes, those lab clinics are open early or later than 8 to 5 to accommodate the working public.  You may have to ask around or check websites for hours of individual locations.
3. Schedule appointments together if possible.  When I had different specialists on all kinds of schedules, I tried my best to get them to overlap as much as possible.  This was because taking time off from work was a pain.  By making one appointment in the morning and the other in the afternoon, I was able to take off just one day at a time instead of a bunch of half days. Also, if I knew I needed lab work that had to be done off-site (like at an actual lab) for different doctor’s office, I would try my best to schedule them and get the lab work all done at once, often times taking advantage of the extended hours like above.

Expect Surgeries

If you know you’re BRCA positive without having cancer, you will most likely have surgeries to remove tissue in your lifetime.  For some women, this will be done in a preventive manner.  They choose to get these various parts removed before they turn into cancer.  For others, they may wait, doing screeners to catch the cancer as early as possible, and get the surgeries done as part of the treatment plan for the cancer.

There are some surgeries that are more common than others.  These are the most common surgeries on BRCA positive women:

1. Mastectomy: The removal of breast tissue.  This can be done with reconstruction, which is plastic surgery made to make it look like you still have breasts, or without.  A lot of mastectomies are done in phases, or steps, and involve more than one surgery.  At a later time, I plan on explaining in greater detail all the different kinds of reconstructive surgeries there are.
2. Salpingo-Oophorectomy: The removal of the ovaries and Fallopian tubes.  Since this one would obviously sterilize a woman, it’s one that is usually recommended after she is done having children (however, if you still have your uterus and cervix, you can still have children with the help of frozen eggs).  When this surgery is done, it will cause the woman to go through medical menopause.  The recovery for this is about 2-4 weeks and nowadays is done with a fairly small incision in most cases.
3. Salpingectomy: The removal of the Fallopian tubes.  This one is more controversial and isn’t always recommended by those in the medical community.   Long story short, a lot of doctors and scientists theorize that ovarian cancer oftentimes starts in the Fallopian tubes.  So, for a woman who doesn’t want to go through menopause but is done having children (or froze her eggs), this may be an option to lower her chance of cancer while not negatively impacting her life as much.  Unfortunately, at this point in time, there isn't a consensus over how much this surgery lowers cancers risk.  The recover is similar to the Salpingo-Oophorectomy.

You Will Have Unexpected and Individualized Stress

When I first found out I was BRCA positive, all the doctors and I agreed that I would do screeners for now and surgeries later.  My first planned surgery was my mastectomy.  My oncologist recommended I go talk to a plastic surgeon about what to expect with it so that I can start looking at making plans for my future.  I did, and it ended up being the worst experience of my whole journey.  To make a long story short, I’ll just share the key parts of the conversation we had.

Dr. Whoever said to me, “I see you’re a teacher.  You know, we can schedule you for next week (early June) to do direct-to-implant and you’ll be all healed up before next school year.”

I replied, “Well, I’m actually really underweight right now due to stress-related health issues I’ve had recently.  I’m in the process of recovering, but I do not want to be this size when I gain back the weight I’m hoping to recover soon.”

“You look fine to me.”  (Note: I didn’t.)

“Well, I’m also not planning on getting my mastectomy done until after I breast feed any children I have.”

“I’m looking at your chart.  You have X and Y health issues.”  Both are not related to my BRCA but are very much linked to infertility in women.  “Do you really think you’re ever going to get pregnant?  It says you’re not married.  Do you even have a prospect?”

“I have been treated for both those things for nearly a decade, so my chances of being sterile is lower than most women who have it.”  At the time I didn’t know this, but the man who became my husband and I met shortly after this.

“Look, my sister is 44 but still keeps saying she’s going to find the right guy, get married, and have babies.  She doesn’t want to hear that it’s not happening for her, but it isn’t.  I just don’t want you to end up like her.”

“I’m only in my 20s.  I’m not a helpless case.”

Needless to say, he did not do my mastectomy.  I found an amazing surgeon years later who listens and cares and treated me like more than the sum of my parts.  Also, I was able to have my son and wait until he was done getting my milk, so I showed him (well, except I never saw him again).

Each person’s BRCA journey is as unique as the person going through it.  However, it seems that we all have stories of being treated as less than human, like I felt when I met with the surgeon above, ignorant or stupid, or ungrateful or unappreciative. There also seems to be a pattern of conversations with others who are insensitive.  Depending on our age and health history, we may stress about bearing children, causing short-term and long-term issues with the screeners or surgeries, or negatively impacting our relationships.  You may feel like a burden to those around you.  You may go through periods where you can’t be there for others like you wish you could. You may grieve the loss of parts or losing your chances of getting pregnant before you were ready.  For many women I’ve talked to, the journey has brought hurts they’ve experienced to the forefront, making counseling or therapy a necessary step.

At the end of the day, the best tip I can give you is this: You are enough.  Don’t let your thoughts tell you otherwise.  You are wonderfully made.  You will get through this.

With all this, I just want you to know that being diagnosed BRCA positive is not a nail in the coffin.  It is not the beginning of losing hope.  It’s just a small data point. You are more informed than most people and in a way many people wish they could be.  You can keep living.  You can keep looking towards the future.  It’ll be different than what you expected or wanted, albeit, but it’ll be full of joy and amazing memories.