Resources and Q&A



Resources:

PRMA – Information, blogs, patient stories of reconstruction

American Society of Plastic Surgeons – Breast Reconstruction

Dr. C’s Blog Spot – Micro-surgeon for breast reconstruction
Please see my testimonials for PRMA and Dr. Chrysopoulo here.

DiepCFoundation.org - A non-profit 501(c)(3) organization providing education and resources to empower women and men with information to make an informed decision about options for breast reconstruction after a mastectomy.

DiepCJourney - Closed/Private Facebook group for DIEP flap

FORCE - Facing Our Risk of Cancer Empowered: For those affected by hereditary cancer

Beyond the Pink Moon –  Closed/Private Facebook group of Lovelies supporting each other

BRCA 101 & 102 – Closed/Private Facebook group for the latest on BRCA



Questions by Topic:


Genetic Testing


Q:  Why did you decide on getting tested for BRCA?

A:  As you see from this post, I didn't come by it easily, but I also knew it was something I had to do. My gut always knew I'd be positive.  With a great-grandmother, grandmother and mother who all had breast cancer, odds weren't in my favor.  I wanted the results so that I could get the surgery. 

Type of Surgery

Q:  Why did you choose one-step with implants over DIEP, or other surgeries now available?

A:  I get this question most often.  It's all personal choice really, well that and the best fit for you with your doctor's guidance.  In this post I explain more thoroughly why I chose one-step with  implants. But in short, I hate hospitals, I had needles and I hate pain.  I chose what I thought I could handle.  I also had a short window of time as I traveled from Singapore for the surgery.  I  needed to be healed enough to handle International travel.  It is very important to have an open conversation with your surgeon.  Your surgeon should listen to your desires and concerns, making a shared decision in the surgery.

Choosing a Surgeon

Q:  How did you choose your surgeon?

A:  This is such a personal choice and decision.  As you read here, I went through a very thorough inquiry into different recommendations.  Everyone has his/her favorite person to recommend, you have to filter through the information to find what is important to you.  For me, it was foremost making a connection.  It was finding someone who listened.  It was finding a place that I couldn't get out of my mind.  Not one other office I spoke with would even let me past the reception.  I couldn't speak to any doctors until I filled out massive amounts of paperwork, including insurance.  I was shocked.  PRMA was the only choice for me.  Secondly, you need to make sure your surgeon has specific credentials before you let him/her touch you.

Here are some guidelines:
*  American Board of Plastic Surgeons
*  American Society of Plastic Surgeons
*  American Society for Reconstructive Microsurgery
*  hospital or ambulatory center accreditation
*  fellowship in the American College of Surgeons
*  state licensure 
*  where did the doctor or surgeon attended medical school, where did they complete their residency, how many total years have they been practicing medicine, etc.
*  what is the surgeon's specialty (breast reconstruction, microsurgeon, general plastic surgery, etc.)

Insurance

Q:  How did you get your BRCA test covered by insurance?

A:  Back in 2005, it was in my best interest to have my grandmother get tested first, as she had already had breast cancer.  With her results, my insurance paid everything but the co-pay for my test. Read more here.

Q:  How did you handle filing for approval for your reconstruction surgery?

A:  Thankfully, I didn't do a thing!  PRMA did everything for me...everything.  It was not an easy wait, but you can read about the process here.  

Explaining to Others

Q:  How did you tell your kids?  How did they react?

A:  This is most easily answered by reading this entry where I detail our conversation with the kids. It came up naturally, so it was easy.  Hard, but easy.

Q:  What is a mastectomy?  Is it a boob job?

A:  You wouldn't believe how many people gave me advice on what it was like having a boob job, or compared my surgery to having one.  I gave them the fact that yes, both are surgeries that take a toll, but I had to explain so much more.  It goes way beyond a boob job.  Here's how I handled it.

Surgery/Recovery

Q:  Did you like the hospital in which your surgery took place?

A:  My husband and I commented over and over again about how incredibly nice EVERY single person was at the hospital, beginning with the lady at registration.  EVERYONE wanted to be there, everyone wanted you to be at ease and everyone went above and beyond from check-in to check-out. I was saddened to read blogs recounting horrible hospital experiences from other ladies during their surgeries, staff who just increased the anxiety instead of helping to relieve it.  I remember very well my administration team, my initial nurses who prepped my clothing, my surgical nurse, my anesthesiologist, the man sitting at the computer next to my bed in post-op and all of my nurses thereafter.  I remember all of them because they all took the time to make it pleasant.  

Q:  Did you have a lot of pain right after the surgery? 

A:  I have to say, I built up the actual surgery much more in my mind than I needed to do.  I was smiling and calm that whole morning, photos prove it.  All I needed was the anesthesia and next thing I knew, my nap was over!  I was in great spirits throughout my hospital stay, drugged, but happy. My family came for visits, my doctor came for visits and my husband stayed with me the entire time.  We took photos, made videos, I blogged...A LOT.  So, no, I didn't have as much pain as expected.  I had discomfort, moments of muscle spasms and drain pain, but not the excruciating pain you'd think you'd be in.

Q:  How was your overall recovery?

A:  For now, only 2.5 weeks out, I'm leaving this question until I'm beyond it.  I have a day to day journal on here, recounting every step of every day.

I'm 4 weeks out now and doing really well.  I cannot emphasize enough that you really need to make sure you find a surgical team who will be with you throughout the entire journey...from decision making all the way through your first few months of recovery.  It makes all the difference in the world.  Here's my 1 month update post

Packing

Q:  What did you find you REALLY needed to take with you for the surgery, and what did you need for the recovery?

A:  I haven't written an extensive post on this yet, but I will and I'll link to it here!  In the meantime, I have a small list of items I packed here.  Basically, I read list, after list, after list.  Had I actually packed everything that was suggested, we would have exceeded our baggage allowance on our International flight!  Here's what I brought/bought and actually NEEDED for my surgery and recovery.
  • Tank tops (larger) and white men's Hane's t-shirts cut up the front to wear under the surgical bra.  Keeps from rubbing against your skin. 
  • Throat lozenges...after five hours with a breathing tube, your throat hurts for the first couple of days.  However, my nurses quickly learned I'd eat the heck out of Jello, so that would have sufficed.
  • Button front shirts, dresses, etc for the ease of getting dressed after surgery (at least until you're approved to begin lifting your arms above your head.)
  • Button-front pjs
  • Face wipes.  I was tired that first week after surgery.  I did not want to wash my face at night, nor did it feel good leaning over. 
  • Shower pockets.  I wore them 24/7 until I got my drains out.  I had two pair so that one was always dry for after the shower.  You can find other ways of dealing with your drains, but this was just so easy.
  • Pillows.  No, I didn't bring pillows nor buy pillows, but I made sure I had plenty of pillows for reclining and elevating my arms.
  • Pill cutter.  If you're like me, taking a whole dose of medication didn't fly.  The pill cutter and I were friends.
  • Blanket.  You might have another comfort item in mind, but for me, it was a blanket my mother-in-law surprised me with.  It was so lovely to have that with me in the hospital and up to now.  
  • Support!  If you are traveling for the surgery, with family, make sure you have someone to help 24/7 that first week.  My mother in law was instrumental in watching the kids and allowing my husband to stay with me in the hospital.
That's it.  There are so many other things I brought that I didn't need at all.  These were the only things my husband and I agree on that were very much needed.

Lodging/Transportation

Q:  Where did you stay for the two weeks you were required to stay in San Antonio?

A:  Please refer to PRMA's excellent list of resources to help you in addition to suggestions for places to stay.  We stayed in three different places, all of which met our needs in different ways.

1.  Airbnb.  We chose a house for the first week which allowed me all the comforts of home, a washer/dryer and plenty of space for the family.  It was an awesome house, so clean and provided everything you could need and best yet, it's right off Medical Drive, so you're close to the hospital and Dr. C.  The owners are both in the medical field at the same hospital which was also a nice added touch.  Here's the link to the house we chose.

2.  Omni Hotel at the Colannade.  This hotel is also near the medical area, so you're a quick distance to the hospital and Dr. C, but with the luxury of a hotel.  We kind of indulged here, spending three nights in the family Aquatica Suite after leaving the Airbnb.  I wanted room service and maid service as a treat.  This is a two room suite, allowing one room for the parents, and another room decked out as if under the sea for the kids.  The regular guest rooms are lovely as well, so don't feel the need to splurge.  There's an excellent breakfast buffet (not included), indoor and outdoor pools, a spa, fitness center and pool-side movie nights Friday and Saturday.  Ask for the PRMA discount.

3.  The Hotel Contessa.  Another treat to myself, and the last place we stayed in San Antonio.  This hotel was simply amazing.  Best of all, it's right on the Riverwalk.  Really, you walk out of the lobby and you're on the river.  The staff is very attentive and friendly, the rooms are luxurious and the roof top pool is quite breathtaking.  The morning breakfast offers a buffet or menu (kids 8 and under eat free with paying adults).  This was loved by the whole family.

Q:  How did you get around for the weeks you were in Texas?

A:  We used RelayRides.com (yay for the sharing economy!).  We rented this car, which turned out to be perfect for our size family.  

Ketogenic Eating


Q:  What is the Ketogenic Diet or Ketogenic Eating?

A:  ketogenic diet is well known for being a low carb, moderate protein and high fat diet where the body produces ketones in the liver to be used as energy. It's referred to as many different names – ketogenic diet, low carb diet, low carb high fat (LCHF), etc. In medicine, it is used primarily to treat difficult-to-control (refractory) epilepsy in children.  Many are now using it for weight loss, hormone control, energy booster, disease control/elimination, etc.  For recipes and ideas, you can follow my daughter on YouTube, Twitter, Facebook and Instagram to see how we eat and make this work as a family.










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