Tag: BRCA2

It’s game time…

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In one week, my surgery journey officially begins.  A quick 7 days from now, the proactive steps will finally be put into motion.  My research, my prayers, my difficult decisions, all will be put into the first step towards my life saving actions as a BRCA2 positive gal.  This day came too quick, yet not fast enough.  I’m excited, yet anxious, worried, yet relieved.  Either way, it’s game time…

I have decided to do something a bit more radical, a bit more hopeful, a bit more daring, if you will.  This decision came with quite a bit of resistance, as you will soon learn why.  Resistance from a loving husband that does not want his wife to succumb to ovarian cancer, resistance from a skilled doctor that does not have 100% proof that my preferred surgical method will save my life.  That resistance came at me like a ton of bricks and I wasn’t prepared mentally for how many emotions and facts I had to sort through to make the very best decision for myself and for my family.

You may remember from my previous post describing the new research behind a two step surgical approach – removing fallopian tubes now and ovaries closer to 40 to buy some more “natural hormone” time to prevent and delay the early menopausal symptoms described earlier.  Some “two steppers” will be so bold as to say that they will have their fallopian tubes out now, let their body go into menopause naturally and then take their ovaries out (normally past age 50).  One has to put ALL of their belief that ovarian cancer does for 100% fact start in the tubes to go with the second approach I just described.  I myself am going to go with the first option, a Salpingectomy  – the surgical removal of the fallopian tubes with the goal being to remove my ovaries closer to age 40.

While yes, this is all new research.l_9e614030-5add-11e1-ae55-ebbe63100001.. While yes, like my gyno oncologist says, this is all too new to put our full trust in just yet… While ye,s this is NOT an easy call to make… I am happy with my decision.  The suggested timing for ovary removal for gals like me with the BRCA2 mutation is between ages 35-40, so I am comfortable waiting until the older end of this suggested time frame.  I’m prayerful that in the next nine years the research will prove that ovarian cancer does indeed start in the fallopian tubes, which may allow me to actually keep my ovaries altogether.

Here is one of many articles I read to help me navigate through my decisions…

Bilateral salpingectomy, the removal of both fallopian tubes while preserving the ovaries, is considered a safe way of potentially reducing the development of ovarian serous carcinoma, the most common type of ovarian cancer. Increasing evidence points toward the fallopian tubes as the origin of this type of cancer. Removing the fallopian tubes does not cause the onset of menopause, as does removal of the ovaries.

And another…

Surprisingly, in the past few years, it has become clear that the most aggressive types of “ovarian” cancer don’t start in the ovaries at all.  Most “ovarian cancer” actually starts in the fallopian tube and some of these cancers start in the uterine lining cells that are shed and pass out the ends of the tubes during a normal menstrual period.

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I’m so thankful I took the time to slow down and really do the research I needed to come to this decision.  My doctor was rather intimidating and naturally concerned about my plan from day one.  She really pushed to have me consider ovary removal but did acknowledge the major risks associated with early menopause.  When I called back to tell her I just wasn’t ready for that, but that I was comfortable taking a different proactive step, I inquired if she would support me with my decision.  Within minutes, my Salpingectomy surgery was scheduled.  She switched gears quickly and I think she was thankful that I decided to do something instead of waiting to do anything until I was 40.

I have absolute faith in God that this is the right move, the right time and the best next step along my BRCA journey path.  The next hurdle I have to get through is surgery and even more important, a clean pathology report.   During surgery, doctors will remove both of my fallopian tubes.  Saline will be injected around my ovaries, cervix, etc. and then quickly collected to test for any suspicious cellular changes in both the saline and in the tubes.  If there have been any changes, I’m sure the doctors will have a good plan in mind for me and I will cross that bridge if I need to but am doing my best not to worry about the “what if” on that report.

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The healthy report is in His hands.  I have given Him all of my worry and am now into planning mode.  I will have a 4-6 week lifting restriction which is a HUGE deal in my house.  Having to depend on someone else around the clock to pick one of my three kids up out of their crib, put them into their high chair or car seat, lift them up for a big hug…all will be so hard for me.  I’m learning quickly that the risk for hernia and/or internal damage is high after a surgery like this because my insides won’t be done healing for quite some time.  However, I’m blessed to have the best nurse, husband and dad available to take care of everything.

I am keeping my mind on the game – on the end goal.  This will be a tiny piece of my surgery journey and the recovery will always come with it.  I’m hopeful my kids will adapt okay to me not picking them up for a big hug or putting my twins to bed like I have every day for the past 14 months.  I’m prayerful that my doctor will call me as soon as she can to tell me my pathology report is clean so that I can continue to pray for guidance with my next surgery step.  I feel good, empowered, and ready to take action.

Alright Courage Clinic, it’s game time…

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See you next week.

xox,

Carey

My new normal…

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Ever since I found out that I was a BRCA2 carrier, I followed the rules and got the recommended mammograms and/or ultrasound screening every six months.  While a huge part of me was ever so thankful that I had the opportunity to “check” on my breast health so often, it was also a constant reminder of my high risk situation.  The check ups were a part of my new normal, a normal I am still getting used to.

To be honest, most of my breast care appointments are a bit of a haze.  Before any scans are done, I get a clinical breast exam and “the talk” that included a kind nudge from the doctor about my plan.  They were first eager to know when I would be done nursing so they could do the MRI.  While not a typical “screening ” tool, experts now want high risk gals like me to undergo a breast MRI every year, since it provides a much better view of the breasts.  I found this post that explains the use and benefits of an MRI rather well in case you are a BRCA+ gal yourself and are curious about what types of imaging your doctor may recommend if you have not met with a breast care specialist yet…

Breast magnetic resonance imaging (MRI) is an imaging test that creates detailed pictures of the inside of the breasts. Although breast MRI is not regularly used for breast cancer screening, it may help detect breast cancer in its earliest stage for some women who are at high risk for developing the disease. The most common type of breast cancer discovered at this stage (stage 0) is ductal carcinoma in situ (DCIS). DCIS is a noninvasive cancer, which means cancer cells have only been found in ducts of the breast and the cancer has not spread past the layer of tissue where it began. 

My breast care team will be happy to learn they will be able to do an MRI on my girls within a few months once I’m done weaning.  While they would agree pumping/milk production is a really good thing for my breast health as I covered in a previous post, they are even more anxious to get a baseline MRI done to ensure they have full visibility into anything that may be in its earliest stages.  They are also anxious to learn when they can get the green light to remove my breasts, something I have not had a clear reply to.  I quite frankly shut down when it’s brought up, since I’m not ready to go down that road just yet.  I will FIRST be tackling my surgery options to hopefully prevent ovarian cancer since that is something that cannot be caught early.  I will cover my breast surgery options and timing in a later post, but until then, be patient with me as I continue to make difficult decisions surrounding my breast care surveillance and future surgeries.

I digress…

Last month, I had probably my most emotional imaging appointment to date.  I was due for a breast ultrasound.  When I arrived to the Courage Clinic, they told me that they would be using a new ultrasound machine on me that day, one that is known to better detect cancer in ladies that are high risk and/or have very dense breasts.  Fantastic, yet another bit of royal treatment for me that day.  Instead of the normal ultrasound “wand” like most of you have probably seen or personally experienced from pregnancy, injury, or other scans, I had the pleasure of lying under one of these fabulous contraptions for the afternoon…

The tech was sweet, made small talk while doing her thing and then left the room for what felt like 45 minutes.  I sat in the room by myself during this time and did my best to stay calm.  Before long, in walks the tech with the radiologist who very quickly blurted out, “We are going to need to re-scan your left breast.  We see something.”  She did her best to try to reassure me that it might be nothing, but that she saw a suspicious spot she needed a better view of.  I laid back down and let the tech do her job while I stared at the ceiling.  She left the room and said she would be back once the radiologist had a chance to look at the close up of “leftie.”

In that moment, I was scared.  But yet, I was hopeful.  For a few seconds, I was even thankful.  I said a quick prayer, told God this was in his hands, and prayed this wasn’t anything other than silly breast tissue dancing in the wrong spot.  After 20 minutes, the radiologist finally walked back in and said, “You are all good.”  I could have hugged her right then and there.  Whew.

But wait, I will have to go through this again in six months.  As I drove home, I got pretty emotional about my new normal.  I thanked God for my health and for watching over me in that moment.  I asked him to stay with me as I stick with my close surveillance plan for my breast care until I am ready for surgery.  I joked with him that I would appreciate my next imaging visit to be a bit more boring.  I could do without the dramatics of the extra scans, the radiologist in and out, and being left alone to wonder if the BRCA mutation caught me before I could catch it.

While a creature of habit, I never thought that at the age of 31 I would have to have such emotional appointments as a part of my normal routine.  The scans, the wonder, the waiting…the hoping and praying that I don’t have to hear “we found something” and wonder if they truly did find something.  I’m going to have to get use to sitting inside those small rooms waiting for the radiologist to come in and give me the clear, knowing I would have to return for another round six months later and say the same prayer.

I much prefer the more simple routine pleasures of my every day life – coffee that my barista of a husband makes me every morning, a refreshing 30 minute jog, stories and bath time before bed with my kids…the list goes on.  In all of my worry, I will continue to be gracious and thankful to the Lord for all he does each and every day, working in ways I can see, and in others I have yet to discover.  I truly am appreciative for the amazing technology that will ever so carefully assess my breast health, for the red carpet service at the courage clinic, for the doctors that specialize in the BRCA mutation.

In the meantime, I am still working on getting to know my new normal…only a few more months until I meet the MRI machine that hopefully will have a pretty boring story to tell…

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Until next time,

xo Carey