June – August 1012:
How I got to Mastectomy (below is a post from a few years back summarizing how mastectomy landed on my radar)
Back in June, on a Thursday, I was sitting in clinic
waiting to see a patient. The Attending Physician I work with had just returned
from a national oncology conference and was giving us the low down on some of
the hot topics of discussion of the past week. Now let me step back, it's
interesting to note I'm only in clinic two days a week. The rest of my week I'm
in another building with another life. So had this physician returned on a
Monday, I would have missed this discussion in its entirety and be none the
wiser for some time to come as the news filtered itself out into the general public. So the timing of these events is not lost on me. Back to the day's events, he was telling us about all the new pediatric oncology research that focused on
exposure to radiation therapy and long term outcomes. We've always known
radiation therapy is a yin and a yang, particularly when used in children. It's
a terrific modality for curing certain tumors, but it carries its own
potentially negative risks while propagating the positive curative ones.
Historically, Hodgkin's lymphoma patients received very large doses of
radiation to the chest region, where primary tumor most likely lived. And we've
always known these large doses, while needed for tumor kill, can lead to
secondary risks later in life. For female teenagers, breast cancer is one of
these risks. We've known this for years. What we didn't know was the magnitude
of that risk.
Back
to the meeting highlights, the Attending Physician began quoting off the new
statics on the radiation data. Well, let's just say my ears perked up when I
heard numbers that were much higher than previously published. (I had been
treated for Hodgkin's Lymphoma when I was 16 so this was not only
professionally relevant but personally relevant.) Simultaneously, while he
was speaking to the few of us in the room, I went online to the meeting abstract to pull the data myself. And
there it read - females treated with 20 gy doses of radiation carry at least equivalent risk for breast cancer as women who carry the BRCA gene for breast cancer.
As I continued to read, and mentally calculating my own dose of more than 40 gy (being
double that number reported in the meeting abstract), light bulbs start going off in my head like that on the red
carpet. Percentages ranging from 30% up to >90% as you advance in age.
What?!?!?!?!? We had thought it like 10-30%. That was a risk I had known and
even prepared for. Roll the dice, it may happen, but more likely not. I've done
cancer once, surely not twice. But 90%???? Are you kidding me? That's a whole
other ballgame. That not a statistic, that's a prediction!
That's...terrifying.
I
quietly try to gather my wits and think rationally about this data while I am listening to the physician transition over to other topics from the meeting. But my mind keeps racing back to what he has said. I formulated an email to a breast oncologist I work with in my other job. (Reminder, this
life altering conversation happened on a Thursday when I happened to be
present in clinic; I started working with this breast oncologist I am now email only six months ago. God's timing in this story is already starting to declare itself.)
"Breast
Oncologist, have you seen the new breast data that was just released for
Hodgkins patients? What do you think about me doing yearly mammograms in
addition to the yearly breast MRIs I'm already getting? I had lymphoma and was
treated with more than 40 gy doses of radiation to the chest as a
teenager. (details summarized)"
"Sally,
yes, I saw the data. I didn't realize you were a lymphoma survivor. I think you
need to see a breast surgeon......" And at that very second I mentally
checked out. Stopped reading. Had tears pool at the bottom of my eyelids.
Excuse
me? What in the world did he just say??? A breast surgeon? What do you mean a
breast SURGEON? Didn't you mean to say "yes, please schedule a mammogram
at your earliest convenience."? Why in the world are you mentioning a
breast surgeon? Ok Sally, check back in, compose yourself. Wipe the fluid from your eyeball and retype
the email.
"Breast
oncologist, did you mean to write the word surgeon in your email? I'm a little
confused. Did you mean to say oncologist?"
"Sally,
I think it would be wise for you to meet with the chief of breast surgery to
discuss mastectomy options. Let me talk to her today about your case and I will
get the appointment set up for you as soon as possible." (Paraphrased email verbiage)
Hyperventilate.
Mind racing. Punch in the stomach. Oh my gosh, please don't let me throw up
right here in my laptop in front of everyone. Hold it together. Pull up your
boot straps. Got-to-get-some-air-now. Walk out of the room to the bathroom and
ball your eyes out. And then it also hits me while standing in that
bathroom....Ron!
Let
me insert here that all of this unfolded in a matter of about 3 minutes from the
time the attending physician walked in all excited about the conference he just attended
to me being set up in an appointmentt with a surgeon. How does that even
happen?
Email
Ron frantically. Email my sister frantically. Wait for response from
oncologist. Pull up data on BRCA gene. What in the world, a prophylactic
mastectomy? Women actually do that????? I really don't think I had any idea
that women were finding out about BRCA gene results and scheduling
mastectomies (since the timing of this blog post Angelina Jolly and countless others have scheduled mastectomies to reduce their breast cancer risk). Why do they do that? And why would I do that? That is radical.
That is crazy. That is taking matters into your own hands. Do I not trust God's
plan for my life? If I'm destined to have breast cancer, we just deal with it
when it comes. I'm not someone to run from trouble. I like to roll the dice and
trust God in the decisions in life. I've got this. Mastectomy, no way. (This,
another free flowing train of thought spanning about 45 seconds).
Keep
reading the article, Sally…unlike brca gene patients "hodgkins survivors,
having already reached the maximum doses of radiation, will have limited
treatment options for secondary breast cancer..." (paraphrased) Let me re-read that.
Again. One more time.
Frantically
email Ron a second time. Desperately watch the clock. I've GOT to get home!
This room is closing in on me. I'm of no use to these patients today.
Devastated. Confused. Frightened. Surprised. Blow to the stomach. (Little did I
know that Ron was having the exact same experience sitting at his work desk as
he later told me).
So
it was no longer IF I was going to get Breast cancer, but more likely WHEN. And
when that were to happen, my treatment options would be limited to no
radiation.
Long
story made semi short. Two weeks later, I'm sitting in an exam room with two
surgeons discussing my mastectomy plans. Two weeks! Who gets an appointment
with the chiefs of breast surgery and plastic surgery in two weeks? God does,
with a little of "it's all who you know" thrown in for balance. By
the end of the appointment I had a surgery date scheduled for August 7. The
delay only because one of the surgeons was headed away on vacation for two
weeks. Those four weeks would become very challenging for me with me
subconsciously processing the what was to come. The radical procedure was going
to happen! I chose the crazy option!
I
should insert here, I'm a unique case. I got massive amounts of radiation as a
teenager. Dose is everything. Timing and age of exposure is everything. Not
every radiation patient has these risks. There is a lot of data that has to be
sorted through for any given patient. I am NOT advocating mastectomy for
radiation patients. I'm not even advocating mastectomy for hodgkin's patients.
I'm advocating that you research the data. Determine your risk. I'd bet for
most women, mastectomy is a bit drastic for your statics. For me, it became a
very reasonable option that dropped my risk from up to 90% with limited
treatment options down to about 5%. Less than that of the average reader
reading this post. Then, I'm advocating support for women who choose this crazy
life saving option. This is a radical life changing choice, and women need
support in that. No judgment. No gossip about the "did you hear". No
questions about implants and a boob job. Don't ever ask "how big are you going!"
Support! Encouragement. Belief that this hard choice is able to be done
successfully. Cheers of "you can do this" should be shouted through
your telephone, your open front door, across the restaurant table as she sits
there telling you her incredible dilemma and support that she can be open about
this extremely personal journey. Understand that this is an awful decision to
have to make and that this surgery is not knee surgery. She needs Love. She
needs to know what she feels is justified, even if on some levels it seems
trivial.
What
she (now me) is feeling is something i never previously understood. Fear of the
what ifs. Guilt for her thoughts of vanity. Shock that this is happening.
Concern over her spouse and what he may think. Disappointment over
reconstruction options. Guilt for feeling that disappointment. Shame that
having no boobs affects her like it does. Shame that this journey impacts her
like it does when she didn't even have breast cancer like some women have to
struggle through both BC and mastectomy. Confusion as to why this affects her
so drastically. Worry that God may have wanted her to choose differently.
Frustration over the physical limitations now present. Anger at her lack of
control. And the list goes on. Trust me, it's best to just sum it up and say
"She feels a lot!"
Anyway,
back to the original point of all if this. In order to process the big picture,
I have to understand how those first few weeks played out. How timing is
everything. How God chose a Thursday for this discussion to take place.
(Reminder, this was brand new literature your average person would not know
about for quite some time to come. I work in oncology.) How God, not even six
months before crossed my path with that of a breast oncologist that I work on several
projects with. That God would grant Ron and I wisdom to recognize His role in
placing me at the right place at the right time and his offering this option to
us. That Ron would make his decision that I should go through with mastectomy
before I would and that they would match up. Maybe God had a specific plan not
only to save me from a tremendously difficult journey with breast cancer, but
to change me, challenge me, grow me. Was Sally going to let fear of a drastic
surgical procedure guide her? Was Sally going to trust that God had big plans
for her or even someone else by choosing the hard road? Who was Sally going to
put her faith in?
I'm
changed. I'm challenged. I'm broken. I'm restored. I'm accepting my new breasts…as
strange as that sounds. But most importantly, I'm allowing this journey to be
whatever vessel God chooses in growing His kingdom. I may kick and scream along
the way, but I'm still moving forward. I take steps back. I doubt things, but
I'm committed for the long haul. Come what may.
Now,
pray that these next few weeks are smooth. I have a great bit to accomplish in
a short amount of time. Pray for my transition back into life. Monday, I start
removing some of my restrictions. In two weeks, back to the surgeon to assess
everything. Will the skin survive, is my mobility and strength back, have the
impostors settled in their new home. Is the swelling and pain gone. Can I
handle going back to work? Can I drive? Can I shower in my own without falling
apart emotionally in the process?
A
lot happened in three short weeks. More than I could ever have imagined. I hope
to be a better person on the other side of this. I hope you found a new
understanding of preventative mastectomies. And maybe you saw a glimpse of
God's provision in the awful (and incredibly amazing.)
October 13, 2016 - Complication: Breast Lump - Breast Biospy
