Life Stories

My Journey With Prophylactic Breast Reconstruction

I still remember the day I first felt the lump in my mom’s breast.  We were at the doctor’s office and the doctor encouraged me to feel it (I am sure she was wanting me to understand what I should be searching for in my own breast exams).  I don’t know what I expected but I felt it, and sort of recoiled.  I remember my mom getting more anxious after I did that and I felt bad that I had that initial reaction and that I hadn’t been more outwardly calm about it.  Ultimately, my mother had a lumpectomy and chemo. Later, my mother would be diagnosed with lung cancer and eventually we would lose her to that, and part of me has always questioned whether we should have encouraged her more to get a total mastectomy.  If you knew my mother though, you would know that as strong as she was in some things, she was weak in other areas and this was one of them.  There would’ve been no way she would have done that large of a surgery, as she feared anesthesia.

I would like to say that my mother was the only one that had a breast cancer diagnosis in our family but unfortunately, she wasn’t.  My mom had just two sister’s.  At the time of my mother’s diagnosis, her mother (my maternal grandmother), her sister (my maternal aunt) and our cousin (my maternal cousin, daughter of that diagnosed sister) had all been diagnosed with breast cancer.  4 women.  A few years after losing mom, another cousin (mom’s other sister’s daughter) was diagnosed at just 33.  5 women.

To give you a better picture of what this looks like. (I’m a visual person).


My Grandma (diagnosed with breast cancer, in her 50’s)

My mom (diagnosed with breast cancer at age 59)

  1. Carla
  2. Roxy
  3. Dawn
  4. Ally

Mom sister (diagnosed with breast cancer, in her 40’s)

  1. daughter (diagnosed with breast cancer, at age 36)

Mom sister (no cancer)

  1. daughter (diagnosed with breast cancer, at age 33)

My younger cousin being diagnosed was a huge wake up call for me.  I had always been good about getting my mammograms, but it was after this that I had a good talk with my family doctor and we decided that I should go through genetic counseling.  After the counseling, it was decided that although my youngest cousin had genetic testing (which she tested negative for the BRCA gene) there was, what they felt, a clear genetic link (cannot have that much coincidence in one family).  Armed with more knowledge, we still opted to wait and monitor more closely.

We stepped up my surveillance, continuing with mammograms and adding in MRI’s (which are able to see tumors that are much smaller).  I was about 37 at the time.  It was during this time that they found a “mass” in my left breast, but it wasn’t presenting like a tumor.  The plan was to watch it with imaging every 6 months.  It didn’t grow so they felt that it wasn’t a cancerous tumor.  Myself and my sister’s have always had “dense breast tissue” which makes monitoring more difficult.  This continued until the year I was turning 40.

  • A promise to myself.

I had always told myself that if I reached 40 years old and hadn’t been diagnosed with breast cancer that I would seriously consider prophylactic mastectomy and reconstruction.

  • Making the decision.

I remember the day I had finally had enough.  I was sitting in my doctor’s office waiting for him (nervous as always, waiting for these results).  He walked in, sat down and looked at me and said, “we need to do something about this.”  My heart sunk as I was expecting to hear that they had found that the spot had grown.  He then said, “every time we do your testing I am nervous to open your results and I can’t imagine what you are feeling.  The mass is unchanged but I don’t like it.  I think that there are things we can do to ensure that we don’t open these results to find a bad report one day.  What do you think?”  I agreed,  I was tired of feeling like I was waiting for the “gun to go off”, so I said let’s start the process for the surgery.

As a side note:  Insurance does cover this in most issues if you have one of the following set of circumstances.

  1. A diagnosis of breast cancer.
  2. A strong family history of breast cancer (more than 3 direct family member (g-ma, mom, sister, aunt, cousin).
  3. Or been diagnosed with a known genetic link (BRCA).

  • The process.

I went back to the Breast Cancer Clinic to start the process.  Dealing with our Breast Cancer Clinic and genetic counseling was always informative and they never pressured me.  The always gave me the information, the statistics and then the decision was all mine.  They took me through the entire process step by step, and I also had to meet with a counselor so that I was acutely aware of the changes that would happen post surgery.

  • The surgery (to the best of my memory).

There is some prep before the surgery.  They do some lymph node marking via tracer beads to ensure that they can visualize all the nodes.  This wasn’t bad, felt like some bee stings but overall, the technicians were wonderful and prepared me well for what to expect.

I also had no other option but to go with the mastectomy and then reconstruction using expanders and implants.  I went with silicone (more on that later).  I did not have enough “fluff”, as they say, to make my own breasts doing a TRAM/FLAP surgery.  I also opted to keep my skin and nipple, as the cancer in our family was ductal (tissue) and not nipple or inflammatory.

I don’t want to say that the surgery wasn’t a big deal but I envisioned it to be far worse than it was.  I think that the hardest thing is that the “feeling/sensation” was hard for me to get used to.  I have never been able to explain it, but it felt like my breasts were engorged (like after my milk came in after my births) 24/7.  That feeling was my biggest hurdle but over time, it became my new normal I guess, and it no longer bothers me.   Your sensation does change and you have spots that are “numb or altered” than other spots.

Keep in mind my surgery was in 2010 which is already almost a decade ago.  Per my sister Ally, things have changed.  I am not even sure that they go under the muscle anymore, but for mine they did and so that took some getting used to.  Obviously, it limited the range of movement of my arms and it changed the structure in my arm pits just slightly.

So, the pain is relative.  I would say that the pain is minimal as far as incisional pain.  It was more a combined effect of the change in sensation and the change in movement with the expanders being under my muscle.

The expanders are a process that took several months.  Again, I am not even sure they still do this anymore.  Once you get to the desired size you have your final surgery and your implants are placed.

My final result was wonderful.  My surgeon was detailed and for him, his surgeries are like a work of art.

  • 8 years later

I did have my silicone implants removed.  A few years ago I became “ill”.  It started out insidious but escalated to a point where I had so much fatigue that I could barely hold my arms up or walk up a flight of stairs at the end of the day.  My joints and muscles ached and my finger joints started to change (arthritis like).  I suddenly had rosacea and my hair was thinning.  I did a lot of doctoring during this time and although they checked me from everything from Chronic Fatigue Syndrome to several auto-immune illness to cancer, it always came up empty (except that I did finally show that I was struggling with thyroid issues).

With everything going on, it was easy to blame my implants, as they were large foreign objects that I placed in my body.  Also, it was easy to find information online everywhere about “breast implant illness”.

I knew that whatever was going on with my body, it was a big deal.  I had always had plenty of energy, (probably too much, I never sat down) for all of my life, so being in this chronic, weak state was alarming to me.  So, I opted to remove my implants.

After that, I also found a Functional Medicine Practitioner.  Some testing showed that I was depleted in many of my hormones and that I had some gut dysfunction.  I cleaned up my eating and supplemented my hormones and over a 1 year time frame, got my body back to a healthy state (not 100% but I would say 85%).

  • After thought.

I will say that it is a very gray line between what was going on with my body and blaming it solely on my implants.  In looking back, I believe it was a “perfect storm” of circumstances.  During that same time, I had gone through a divorce (although now we are remarried to each other again, life is (not)funny), my son was diagnosed (and we were dealing DAILY) with his schizophrenia, things were a struggle during those times financially, and there were other issues as well.  Also during this time (my midlife crisis time), I was running a lot and really pushing my body physically.  Also, I was not eating healthy and although I have never been a big alcoholic drinker, I was drinking more during this time.  NOT to mention that the year I had my mastectomy and reconstruction, I had a total of 5 surgeries (3 for the reconstruction, 1 because I had a small hematoma they had to remove and the last was for my uterine ablation for heavy periods).

I believe that my body had simply just had enough.

  • What I do it again?

Without question, YES (but with a few minor changes).  I would’ve opted for saline implants.  I can still totally get those put in but for now I am just getting myself super healthy and then if I find that it’s still important to me to have the saline implants placed, I will do that.  Also, I probably wouldn’t do that while getting a divorce. And maybe not during a midlife crisis.

Also, it is important to note that I NO LONGER WORRY about getting cancer.  That worry is gone for me.  I do have to have surveillance for my skin and nipples but keeping that was worth that to me.

It is also VERY important to note that both my cousins have saline implants and have had NO problems!

  • My Soapbox.

Be diligent about this issue.  Please check yourselves and stay current with your imaging.  We think that this always happens to other people, but it can happen to anyone.

I have two dear friends, one from high school and another from work that have both had this diagnosis and have gone through treatment and reconstruction.  One has a family history, the other does not.

Breast cancer is nondiscriminatory to age, race or sex (yes, men can get breast cancer).  If caught early, breast cancer is definitely survivable with great success stories. 

Be your own advocate.  

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