Although this blog has been documenting my PBM and reconstruction as I went through it, I have realized there is a need for all of the basic details to be posted on one page. It makes everything so much easier to understand, especially if you are new to this blog.
If you are looking for information about PBM, mastectomy, or reconstruction, I suggest that you take a look at the “Thinking About PBM?” page, and I would highly recommend the blogs listed on my blogroll.
Everyone’s story is different, and the more you know the better prepared you will be as you face the next few months. I also have another website, called Sisters In Scars, that is specifically about breast reconstruction and has information and personal stories about each type of reconstruction.
So after all of that advice, I will finally share with you the major points of my PBM and reconstruction so far.
In 2009 I found a large lump in my breast. After a mammogram, ultrasound, and MRI it was determined I had over 20 masses and Fibrocystic Breast Disease. I was told I needed MRIs every 6 months for the rest of my life and with my family history I was facing a 40% chance of developing breast cancer.
I decided to have PBM (prophylactic bilateral mastectomy) for a few reasons. I have a 40% chance of winning a million dollars? Sure! Sign me up. Those are pretty good odds! A 40% chance of getting breast cancer? Ummm….no thank you.
In January 2010 I had my PBM and immediate reconstruction with exapanders and implants.
There are many different kinds of reconstruction. Mine involved cutting the Pectoralis Major muscle and stretching it to insert a hard ‘expander’. I also had Alloderm stitched to my Pectoralis and Serratus muscles to create a pocket for the expanders and eventually implants to settle into.
Expanders, and eventually implants, are put under the muscle because either one placed directly under skin after virtually all breast tissue has been removed during mastectomy would eventually wear through the skin.
Reconstruction is very different from augmentation. The muscle has to be slowly stretched to allow space for the final implant and to soften to create the look of a curve of a breast. Expanders get filled with saline at intervals (depending on the doctor’s methods and the patient’s pain levels) and then will be allowed to settle for a few months, creating a relaxed muscle and nicer curve.
The expander process is probably the most uncomfortable period (aside from complications that may arise), and many women have trouble sleeping, have the feeling of a tight rubber band around their chest, and various other problems that come with expanders.
They also do a whopper of a job on your self-esteem. The hard expanders, scars, constant doctors’ visits, strange noises from your chest all combine to make you feel a little like Frankenstein.
During my mastectomy I had expanders placed with 125 cc in each side. Due to complications I was in the hospital for 5 days. I finally went home and was surprised to find I couldn’t lift my arms, brush my hair, get dressed or go to the restroom by myself.
Less than 24 hours after getting home I developed a blood clot in my leg and was admitted into the local CCU. I finally went home for good and with a wonderfully supportive family and husband that took wonderful care of me as I slowly began to heal.
Video, 3 weeks post mastectomy:
February 2010-September 2010
Over the next several months I had my expanders gradually filled and stopped at about 425cc in each side. I lost my insurance during this process and had to wait an extra few months before I could have my ‘implant swap’ that replaces the hard Dacron expanders with soft silicone implants.
(related blog posts: The Story of Courage, Three Weeks Post Op, Last Expander Fill, Three Months Post Op, What I didn’t Know About My Surgery, Notes From A Stressed Out Mind, A Day of Release, Chicken Feathers)
In October 2010 I had my implant swap. I was so happy to finally be soft and not uncomfortable again. I was very happy with my results immediately. My friends had all told me that the implant swap surgery would be so easy, and that I would feel so much better once they were removed. After being uncomfortable for 10 months I didn’t believe them, but they were right! I felt like a new person again and the surgery was a breeze!
Within a few weeks I noticed a problem. My left implant was “bottoming out”. The incision that attached the Alloderm to my chest had torn and my implant was sliding out of the pocket.
The swelling from the surgery had diminished and I wasn’t happy with the size of my implants. They seemed far apart and small for my body. I spoke with my plastic surgeon and he felt comfortable with the size and wanted to do fat transplants to close the gap between my breasts, as well as to improve the overall look of the reconstruction. He didn’t feel that the repair of the torn Alloderm would be a very big deal. There were several things about the upcoming surgery that made me uncomfortable, so I began to speak with other plastic surgeons.
December 2010 I had the surgery to repair my reconstruction. My new plastic surgeon replaced my silicone implants with cohesive gel implants of a larger size.
The Alloderm and my serratus muscle were both stitched to my ribs because the damage from the tear wouldn’t allow them to be stitched back together. A small section of muscle was detached from my breast bone to relieve some of the pulling that may have contributed to the tear. I woke up in amazing pain, much worse than any of the other surgeries.
Recovery was fast and I returned to work quickly, although I could not lift anything over 20 pounds for 6 months and could not do anything that would make me ‘bounce’ for that long either. If I were in a situation that would ‘bounce’, I needed to wear 2 exercise bras. I also had to wear an underwire bra 24 hours a day for 6 months. I could not have nipple reconstruction for at least a year, to make sure that the repair would hold.
About halfway through 2011 I realized that I was developing Synmastia, or Symmastia, a condition that is caused when the muscle connected to the sternum pulls away and allows for the implants to migrate to the center and actually touch.
I was very disappointed by this development because although it was rare, I had heard that it was painful to repair and that repairing it would mean even longer recovery without physical activity. I tried to be as careful as I could and hoped it was just in my mind, but as the year went on I finally checked back in with my plastic surgeon and he confirmed my fears.
I had surgery to repair the synmastia in December of 2011. I had to wear a thong bra for 6 months, 24 hours a day. The thong bra kept constant pressure against the sternum in hopes that the scar tissue would adhere the muscle back to where it should be. I will be honest, when I woke up from surgery I was surprised that I didn’t feel more pain.
I had slept on the couch for most of 2012 trying to remain upright to keep from accidentally pushing the implants together while sleeping on my side. I only had 2 months of regular activity that year.
I was very careful through my follow up appointment in August of 2012 when I was given permission to remove the Thong Bra and to continue with normal life. My physical restrictions of 25 pounds were lifted and I could resume all physical activities that I was comfortable doing.
By October of 2012 I realized that my repair surgery was not successful and the synmastia had returned, despite my limited physical activity. When I returned to my plastic surgeon to address the return of the synmastia, he informed me that he was not interested in performing another surgery at that time. He told me that ‘they look better than they did last time’ and ‘don’t do anything for a few months, don’t lift anything, then come back in a few months and we will see.’
At this point I was very upset and my husband immediately suggested I find another surgeon. I had been in pain for almost a year and a half from synmastia, and had already spent most of 2010 through 2012 under physical restrictions. It was time to do something different.
I started doing research, trying to find a surgeon that could help me. I found The Center for Restorative Breast Surgery in New Orleans and sent them my information and photos. They agreed to take me as a patient, and in March of 2013 I traveled with my husband to New Orleans.
The surgeons there removed my implants, removed the Alloderm, re-attached my muscles as they were naturally, and performed a DIEP Flap reconstruction.
During this procedure fat and skin and blood supply are moved to the chest, which was helpful to my condition because now the weight of breasts are back on top of the muscle, just like they are in a normal woman.
(related blog posts: I’m Sorry For The Silence, Video Update 2013, Kindness From Friends, Three Weeks Until Surgery, First of Many Updates, What? Surgery AGAIN??, At Last…Surgery Day, Video Update about Implant Swap to DIEP Flap)
I returned to New Orleans in November, and on November 21, 2013 I had my second stage of my DIEP procedure which included nipple reconstruction, fat transfer to improve the shape of my breasts, and moving my belly button because it was off center.