Delayed DIEP flap Breast Reconstruction ~ My Story
Delayed DIEP flap breast reconstruction, my story, my experience, will hopefully give others considering this method some insight into your planning. In a perfect world immediate reconstruction, that is, reconstruction done at the same time as the mastectomy, results in the best possible aesthetic outcomes for a number of reasons. But, we all know that breast cancer is not a perfect world.
There are reasons that patients have delayed reconstruction:
Adjuvant therapy may be necessary after a mastectomy. If there are lymph nodes that have tested positive for cancer and chemotherapy or radiation is recommended, this could delay your reconstruction.
My story: No lymph nodes tested positive and radiation was not deemed necessary. However, because of the type of cancer I had, left breast recurrence from twelve years previously and a new cancer in my right breast, I was encouraged to have the OncoDx gene test to determine if I was a candidate who would benefit from chemo. This delayed my reconstruction for two reasons. The first tumor sample was “not adequate” for a comprehensive test and a new tumor sample had to be sent in. I can’t tell you the frustration this caused me. It caused more delays and I was confused as to why they needed a second tumor sample. Secondly, my Oncotype DX score was just one number over the “low risk” margin, prompting me to do further research and seek a second opinion to be sure I was comfortable with my decision. I opted out of chemo but this delayed my reconstruction for a few months waiting on results and doing more research. I won’t sugar coat this and tell you it was anything less than heart-wrenching when this delayed my reconstruction. I was on track to have phase 1 and phase 2 done in one year to avoid paying out of pocket expenses two years in a row. But, that didn’t happen for me. In a perfect world….
Advanced Stage Breast Cancer
Advanced stage breast cancer and other health complications, being over or under weight or being a smoker can be possible reasons for delayed DIEP flap surgery. The important thing is to specifically ask your plastic surgeon if they deal with any of these complications successfully with DIEP flap breast reconstruction.
Not having access to a qualified surgeon.
My story: There was a well-trained micro-surgeon in my area. However, my criterion, after great research, was that two surgeons be present in the operating room during my procedure. The reason; to minimize my time in the OR. Additionally, although my local surgeon was board certified and had an impressive enough success rate at the time I asked, he had not done the high number of successful DIEP flap surgeries the group I chose had done. Also, the surgeon I chose and his team member had a higher success rate. The fact that they worked in a team, had done thousands of these procedures over the years, catered to breast cancer patients, and focused on DIEP flap surgery sealed my decision for this group of micro-surgeons to perform my reconstruction.
Quite honestly for me, it was finding the best qualified plastic surgeon. I had very definite requirements. I actually didn’t even know what those qualifications and requirements were until after my mastectomy. I was diagnosed in early April. I had to go through a month-long series of scans and tests to determine the best course of surgery and to determine if the cancer had spread to other parts of my body. This caused further delays. When you are diagnosed with cancer twice, you definitely want to be rid of it. My breast surgeon had an available surgery date in mid-May and I was ready to act on this cancer and get it out of my body NOW! In a perfect world….
At the same time, I felt fairly confident when I scheduled my mastectomy that I wanted to have reconstruction. But, honestly, at that time, I wanted the cancer to be gone. I mentally prepared myself to be wake up from the mastectomy without my breasts.
If I Knew Then What I Know Now
My medical circumstances at the time, finishing semester requirements days before finals in my M.Ed. program, medical tests, a death in our family, and my desire to thoroughly research DIEP flap surgery truly did cause the reason for my delayed DIEP flap. I want to be very clear about this because I hope it is a lesson to learn for other women reading this post. Don’t rush in to any decision. I truly do wish now that I would have asked this question: How long can I wait to have my mastectomy before I compromise the cancer getting worse, growing or metastasizing? Hind sight is 20/20, as is so commonly quoted. I didn’t ask that question.
Perhaps I would have been told, you can wait “x” amount of weeks or perhaps even months. Perhaps I would have been told I needed to have my mastectomy as soon as possible for my own health benefits. I do know it took me weeks of research to meet the criterion I had to find a qualified micro-surgeon to perform my DIEP flap surgery. I do know their practice is very busy and the timing and travel may not have allowed me to have immediate reconstruction. But again, my circumstances at the time were the cause of my delayed DIEP flap. But the fact remains, I did not ask the question: How long can I wait? That, readers, should be your biggest take away from this post.
What if I had immediate reconstruction? Would that divot over my left breast be less visible? Few people notice it but I know it’s there as a probable result of having delayed reconstruction. That skin envelope may have been preserved differently if I had immediate reconstruction. I was told straight up by my plastic surgeon that even though he would fill that with fat grafting during phase 2 it would likely reappear due to the size and indentation of the area. Honesty… that’s what I’ve always liked about him. He communicated everything upfront and straight up! My little sister told me once, “Own that divot, girl!” She was there for me during phase 2 and watched Dr. C meticulously mark me prior to surgery so she knew I was going to be in good hands and knew he would do his very best to achieve the symmetry that both he and I desired.
I know I likely would have had less scars. I know I would have been able to wake up with breasts and never experience having to be fitted for prosthesis and look in the mirror at the flat chest of a breast amputee. In a perfect world….
I know a lot more now than I did going into my reconstruction. But, here is the most important thing I do know. I researched many hours to find a capable, board-certified, compassionate, highly successful, reconstructive micro-surgeon to rebuild my breasts. I have no regrets given my circumstances. I had a very successful surgery with beautiful results.
The Take Away
Ask how long you can wait to have the mastectomy. I didn’t. I wish I had but there is something else I wish…. I wish every woman would be told about breast reconstruction options at the time she is facing a mastectomy or told she is BRCA positive. I was told by my breast surgeon and I am grateful. I also wish every woman, should they choose to have DIEP flap surgery, find a surgeon who is as qualified and compassionate as the one I found. Even though I had delayed reconstruction, I have breasts that are more beautiful than the ones I had before my mastectomy. He did such an amazing job of reconstructing what cancer stripped from me. I’m not sure if I ever really said that to my plastic surgeon. He should know. Thank you, Dr. C!