» My Mastectomy & Reconstruction Story Courage Is My Strength Blog

My Mastectomy & Reconstruction Story

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 “Things to Know” 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.

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. Not having insurance, I contacted the local Komen association for help. Their exam found 6 lumps. My mammogram showed more masses than they could count using mammography. The ultrasound was stopped when they reached over 20 masses, which were all part of Fibrocystic Breast Disease. They told me mammograms and ultrasounds would no longer work for me, they wouldn’t be able to locate new masses because there were already so many. 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 knew that I wouldn’t want to go every 6 months to find out if I had cancer. I knew I would probably end up putting it off. My insurance wouldn’t pay for MRIs that often, and I had learned that some insurance companies wouldn’t pay for them at all. And 40% sounded like a pretty high number to me. 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. 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 and patients pain levels) and then will be allowed to settle for a few months, creating a relaxed muscle and and nicer curve. The expander process is probably the most uncomfortable period (aside from complications that may arrise), 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 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 I slowly began to heal.

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.

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 firends 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!

Wthin 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.

As of November 2011, those were all of my posts about my reconstruction and repair. I’m working on new blog posts now and an explanation about my silence for the last several months.

10 Responses

Donna A

Thanks so much for all your honest reflections, I am preparing for a complete mastectomy in 7 days and I now know what to expect! Keep me updated of your progress!
God be with you!

Donna

January 4, 2012 at 8:21 pm
Maria Miracle

Please feel free to email me. I had a bilateral mast Valentines Day 2011 with immediate tisue exp and alloderm. 3 weeks later I got MRSA and had to have my left expander removed and my reconstruction was put on hold for an ENTIRE YEAR. Dec 2011, just a few weeks ago I woke up and my remaining right expander had deflated. The drs have no explanation. I am feeling pretty hopeless at this point. My reconstruction is scheduled for late March 2012.
I am so sorry for what you have went through and I pray you are doing very well now.

I would love to hear from you,

Maria

January 5, 2012 at 8:59 pm
lisa carter

Thanks for sharing your surery, I had a double mastetomy on 7/21/2011 and expander change out on 12/21/2011. I would love to hear how you are doing.
Lisa

January 9, 2012 at 5:51 pm
vanessa

Hello I am a brca1 carrier 21yrs old and a mother. I’m afraid I am at high risk of developing breast cancer. I’ve been referred to a plastic surgeon I’ve met with him last week I’m scared but I feel like I should do what I have to do to prevent what my grandmother went through. And as a young mother I feel the need to do anything to prevent me getting sick.. I’m terrified to make this decision. HELP! NEED ADVISE! ??

January 23, 2012 at 11:55 pm
Gabriela

Thanks for sharing you experience. Unfortunately not all women have such a chance.
good health in future

February 26, 2012 at 12:48 pm
denise

I had a PBM and sentinel lymph node biopsy on 2/23/12. I was so tired of the lumpectomies, stereo tactical biopsies, aspirations. I have a BRCA2 mutation. Mom and all of my aunts had breast cancer. Their lives were never the same. Mom’s finally invaded her bones. I couldn’t stand the constant fear.

I am grateful to have reduced my chances of cancer.

I was not a candidate for TRAM or DIEP. My PS and my Primary Care Physician agreed on Implants. I must say that the expanders hurt like the dickens! I needed Percoset daily after the surgery, but now I need it at night. Today is 3/15/12. I had my first expansion on the 13th. It wasn’t bad, but it does bother me at night. I was athletic before this began and I wonder if that has a negative effect or if it just hurts. I tried taking Motrin during the day and it seems to help a little bit, but I have to take womehting stronger at night. I am truly not a pill popper. In fact I’m a vitamin and supplement fanatic and I do Taichi, rowing, and weight lifting when I’m well. Lord knows I hope I’ll be able to do these things soon.

My husband took me to a Lingerie shop that specializes in this bras for type of surgery. they are better than the surgical bra, but it still hurts.

Thanks for being here. I’m sorry you went through the insanity – If you have any advice. Let me know.

March 15, 2012 at 6:02 pm
Angela Day

Hi:
Thanks for your blog and postings. I had
a bilateral double mastectomy on March 22, 2012.
I am trying to find out what is the best way
of getting reconstruction surgery.

Please advise.
Thanks,
Angela.

March 31, 2012 at 9:00 am
denise richardson

Here’s to a speedy recovery Angela.

I wish there was a simpl answer to your question, but there is not. There are many possible answers but the answers may not be right for you – physically, emotionally, psychologically.

Of course you will talk to your primary care physician, and at least one recommended Plastic Surgeon (PS). But dig down deep – for every answer there are more questions. It can seem overwhelming, but I found the knowledge search exhilirating.

Let me share my personal experience. I hope it helps you with your search. Time is on your side. You don’t have to make a decision immediately.

I was diagnosed with a BRCA mutation after multiple lumpectomies and biopsies and horrible family history. I initially had an Oopherectomy/hysterectomy and tried Chemo-prevention – Exemestane. I did not tolerate the drug well and we kept finding things. I decided to have the PBLM with sentinel node biopsies on 2/23/2012.

I had a relationship with a PS and though he was my best bet. My brother is a Radiation Oncologist and a huge help. My Breast surgeon connected me with women who had a variety of reconstructions ranging from TRAM-DIEP-Implants.

My PS and an alternative stated that due to my weight and body type I am not a good candidate for DIEP. I also considered nipple sparing – which ended up being a no go. We ended up doing expanders which will be exchanged for implants. It is not a pain free process. I am 5’1.5″ tall weighing 120 at my heaviest. I am athletic even at 60. Although a back problem is delaying my progress – but not for long.

Plastic Surgery today is amazing. BUT!!!!! Just because it can be done does not mean it’s the best thing for you. Even if I was a candidate for using my own body tissue to build new breasts I wouldn’t do it. I have friends and relatives that chose to use that technique and they are very happy. I support them.

I am scheduled for one more “fill up” of my expanders on the 17th of April and then we will schedule the exchange and nipple reconstruction in late May. My PS requires 3 months minimally to heal from the Mastectomy and preparation for implants before doing the exchange.

Please keep me/us posted of your progress. One of your most important considerations will be your relationship with your PS.

Happy Spring – and happy new you.

Denise

April 1, 2012 at 6:10 pm
Angela Day

Thanks for your response and yes will do.
Angela.

April 1, 2012 at 7:30 pm
Barb D

Thank you for these very current and pertinent comments. I just had a PBM this March and was expanded, with allograft etc. I needed a revision a month later as something gave way on my right side. I am now healing but am so freaked out about how much I can move and not mess anything up. Also, is it normal to feel these things move in your chest or is it my imagination? Also, I feel really bad back pain when I first arise in the morning. Am I alone? Lastly, for all of you, I pray you all heal and have peace knowing you are not walking around with a time bomb in a briefcase anymore! God bless you all.

April 11, 2012 at 5:44 pm