The Intersection of Research and Decision for Breast Reconstruction

One day your life is humming along as usual. Work, children, family, friends, school, house cleaning, errands, vacation, cooking, on and on. Then out of nowhere you hear the news that feels like a gut punch. “You have breast cancer.” Perhaps you get genetic test results back and you find out you have a genetic mutation putting you at high risk of getting breast cancer. You are thrust into a new role finding out all you can about your diagnosis. Will I be facing a mastectomy or choose a mastectomy for my treatment? When will the intersection of research and decision for breast reconstruction occur?

The Research Process

Why am I writing about this? I agonized over this part of my breast cancer diagnosis when I was told my best choice for my long-term survival was a double mastectomy. It was my second diagnosis and now in both breasts vs. only one breast at the time of my first diagnosis. My breast surgeon gave me all my options for breast reconstruction but wait! Faced with the news my breasts are going to be surgically removed, I was told I can rebuild them but it is going to require surgery, recovery, and a new body. It wasn’t like I was going to pick out a new dress or new car. No refunds or exchanges if I changed my mind. This had to be a solid decision.

Like many people faced with a mastectomy, I took the printed literature home from my breast surgeon but soon hit the internet. Come on Terri, I would say to myself, you are in the middle of your M.Ed. program. You’ve got this research thing down. I typed in DIEP flap. Of course, the paid Google ads came up first. Skip over those, I told myself. Keep scrolling. Wait! Nothing is coming up in my city for this kind of breast reconstruction. I already decided I do not want implants. That may be fine for some but that is not what I want. Looks like I’m going to have to travel for this procedure. My credit card is starting to ignite in my wallet; flights, rental car, lodging, food, a companion to come with me. Good grief!

Putting Research for Breast Reconstruction into Action

As I often do, I pulled up my big girl pants and started some in-depth research for my breast reconstruction. Here is a list of my thoughts and actions:

• Does my surgeon take my insurance if I travel from out of state?
• Do they have the option to have a virtual consult?
• Find out the success rate of my surgeon.
• See if they have any photos I can look at to get some idea of what I might look like.
• Ask if I can talk to former patients they performed DIEP flap procedures for.
• Join an online group that feels supportive and is evidence-based on the topic of breast reconstruction surgery.
• Talk to women who have had the surgery and can guide me in my decision by answering my questions.
• Are there any nonprofit Foundations that will support me by listening and talking to me? Shameless plug, but yes, and this is why I started DiepCFoundation.org.
• Thoroughly look at ALL my options to make sure I have made the correct choice for my preferences and lifestyle.
• Ask others about the recovery process and how this will affect my life after surgery.
• Will my surgeon engage in a shared decision-making process with me? ASK! This is important!
• If I travel, how will I manage any follow-up calls, concerns, or problems?
• Is there a list of questions I should be asking my surgeon?
• Look at flight information and what lodging costs might be or even where I should stay.
• Find a friend or family member who can travel with you or help you at home the first week of recovery.

My Decision for Breast Reconstruction is Made!

You will know when you are comfortable with your decision. I experienced this feeling. I see the light-bulb moment for others that I speak to. It is not magical like all the bells and whistles go off and the skies open with music queuing up. But you will know and it is a feeling and decision you cannot describe to anyone else. It comes with somewhat of a burden. Why? Now you are thinking about others. What are they thinking and will they support my decision? All the thoughts you had during the research process are still there, although now you have a plan.

With so much to discuss on this topic and everything you have been through; I want you to know something; I congratulate you. You are someone to be honored and appreciated. What you just accomplished was not easy. You learned so much from this process and you will learn more about it as your recover from breast reconstruction surgery. If you cried during the process, good for you! Those are REAL feelings. Validate every single one you have, anger, disbelief, joy, grief, excitement, frustration, doubt. Those feelings are part of the process. You are not weak, or crazy, or delusional. What you are is someone who is facing a life’s crisis and you are dealing with it the best way you know how.

You found the intersection of research and decision for breast reconstruction. Know you are not alone. Others have gone before you and stand beside you through your planning, research, and decision to move forward with the best option for breast reconstruction for YOU!

Disclaimer

References made to my surgical group, surgeon and healthcare team are made because they are aligned with my values and met my criterion after I did research of their practices and success rates. Any other healthcare provider that displays the same skill, compassion education and outreach to patients will be given consideration and recognition on this website.  The information contained on this website is not a substitute for or should be construed as medical advice. Please consult a licensed physician for medical advice.