Breast reconstruction fears after a mastectomy and not knowing all of the steps involved prevent many women from making the decision to move forward with reconstruction. My breast reconstruction journey began when I had my annual mammogram on April 2, 2014. My radiologist informed me the mass she found in my right breast was highly suspicious of cancer. I had to return to her office the next day to confirm this with a core needle biopsy (CNB). The results were ready five days later. My radiologist asked me the day she took the CNB if I knew of any breast surgeons to review results of the biopsy with me. I had been to see one about five years previously to have a benign cyst removed. I was very impressed with the surgeon and asked to schedule the results of my CNB to confirm whether I had cancer or not with her.
I walked into the breast surgeon’s office on April 8, 2014. I had my game face on and didn’t even greet her with a hello or smile. She turned the handle of the door, opened it and I very stoically glared at her and asked, “Do I have cancer again?” She quietly replied, “Yes, you do.”
She remembered me from the procedure she performed on me previously for the benign cyst. I don’t think she was too taken back by my deliberate greeting. We immediately felt the prior connection and began making a plan based on all the information she was giving me. She was fairly certain a double mastectomy was in my surgical plans. I sat and absorbed all she told me.
When You Should be Told About Reconstruction Options
During this initial consult, before we even knew the exact course of action, she told me about my breast reconstruction options and in particular, DIEP flap surgery. She told me it was the gold standard, the cutting edge procedure for reconstructing a woman’s breast after a mastectomy. When she told me the procedure uses a woman’s tissue from her tummy area to form a new breast and you could be your own tissue donor all other possibilities seemed off the table for me. I was given a pamphlet on other methods including implants using AlloDerm. Although I glanced through the pamphlet I knew, with certainty, if I was going to be facing a mastectomy and possible reconstruction, using my own tissue was the only way to go.
This was before I knew about the rigors of autologous (using your own tissue) breast reconstruction called DIEP flap; before I had even researched the fact it was a long surgery lasting between 6-10 hours; before I knew there were very few qualified, successful micro-surgeons in the U.S. who performed the procedure; before I spent long hours researching the credentials and success rates of these specialized surgeons. I was a purist and didn’t want anything foreign in my body. I just knew DIEP flap was going to be my choice.
I was lucky. I was given information immediately by my well-informed breast surgeon. It was a decision I didn’t have to grapple with much, short of the hours of research and planning it would take knowing this was going to be my course of action. Not all women are given this information and even if they are, not all women can easily make the decision to have reconstruction.
Some of the Biggest Fears Women Face
So what keeps women from making this decision?
1. Lack of information from their breast cancer surgeon, oncologist or primary care physician.
2. Lack of financial support, high deductibles from insurance, or the inability to afford travel and lodging to a qualified micro-surgeon.
3. Lack of information regarding insurance coverage for reconstruction after a mastectomy.
4. Inability to be off work for the extended time it takes for reconstruction and recovery.
5. Fear of surgery and pain.
6. Lack of support at home or for travel while healing from surgery.
7. Fear of outcomes.
Solutions to these concerns based on my own findings
1. I became actively involved in learning about and following The Breast Cancer Patient Education Act mainly because of the purpose of the bill. It was set up to provide more educational outreach to those affected by breast cancer and to inform them of their options for breast reconstruction. The bill was passed into law on December 2014. My hope is more women are given the same opportunity I was to learn about the breast reconstruction options the day they are told they are facing a mastectomy. I will continue to monitor and push for the implementation of this bill.
2. I have Financial and Travel Resources listed on my website here.
3. Reconstruction, by law, is covered under insurance plans if a woman has had a mastectomy.
Morrow and her colleagues write in JAMA Surgery that in the U.S., since passage of the Women’s Health and Cancer Rights Act of 1998, women receive universal coverage for breast reconstruction after they have a breast removed. ~ Rueters “Better education on breast reconstruction may be needed after cancer”
4. This will have to be addressed individually depending on your own work situation. Generally speaking, many women can return to work six weeks post DIEP flap breast reconstruction. This can vary depending of the type of reconstruction you have. Recovery for implant surgery generally takes a shorter period of time than autologous surgery. Check with your employer about your FMLA (Family Medical Leave) before your reconstructive surgery.
5. I hear woman say either, “I have a high pain tolerance” or one of the first questions they ask me is, “How is the pain after this surgery?” I can only tell you my experience. I had very little pain. I stand firm in the belief most high volume hospitals and surgeons work hard to control pain after any surgery. Since my surgery in 2014, the surgical center I went to now uses ERAS (Enhanced Recovery after Surgery). It is a proven protocol that reduces pain, uses of narcotic drugs, and is releasing patients quicker from hospital. You can read more about it here: ERAS Protocol.
6. Again, this will have to be addressed on an individual basis. I can only tell you how very fortunate I am to be blessed and have the love and support of my family and friends throughout my journey.
7. My outcomes were beyond my expectations because I knew the skill and experience level I was looking for and found that in the microsurgeon I chose to do my reconstruction. I encourage you to seek a highly qualified plastic surgeon to perform your surgery. I have listed a few on my resource page. Read this blog, print the list of aesthetic questions to ask your plastic surgeon and take it to your initial consult.
Additional Fear Factors
Other fears involve the concern about disruption with cancer treatments. Additionally, the interference with further screenings after reconstruction is a concern to some women.
Fears that immediate reconstruction will delay the start of chemotherapy can also lead women to avoid the procedure. Several studies the authors reviewed found that reconstruction didn’t significantly change how long women waited to start chemotherapy after a mastectomy.
Concerns that reconstruction increases the risk of cancer returning and delays detection of new tumors also loom large. But multiple large studies over a 20-year period found no increased rate of recurrence with reconstruction. Previous research has also found that reconstruction doesn’t delay diagnosis of new malignancies. ~ Huffington Post
I encourage you to research your options. Restoring your sense of femininity and self-confidence is important to you after a mastectomy but is an individual decision. It is important to respect a woman’s choice whether she chooses to have reconstruction or not. All our fears are valid and the decision to have or not have reconstruction is as individual as each of us. I hope my experience, resources, and research can help you in your decision making process.
This post was updated May 18, 2016.
Thank you, very well written and explained of thoughts and emotions. I’m 16 years cancer free, 7 months since double mastectomy. Did start reconstruction last moment turned down by plastic surgeon. Now I have out loud been sharing my thoughts and sadness and depressed feeling I am having. The heart ache I have now knowing my closet family think of me being weak and over thinking causing my own sadness. I have been told you knew this before mastectomy so you shouldn’t have had it done. So thank you I’m hoping they will read this.
Hi Marlene. Congratulations on being 16 years cancer free. The personal struggles you are going through after your double mastectomy must be exhausting at times. It takes a lot of personal courage to explain your thoughts and actions at times even to those closest to you. I hope that over time your thoughts and sadness turn into some positive hope and action on your part. I have listed many resources on the resource tab for you to look at if it helps. Women have to go through a lot of mental gymnastics in this whole process. I think it is good you are sharing your thoughts out loud. I wish you continued strength! Thank you for visiting my site and sharing your experience.
Terri, I love that you addressed both fears AND solutions. The foot dragging around the Breast Cancer Patient Education Act is typical of the political process but we don’t have to wait for Congress or even the standard medical practices to change. Educating women about their options is the key, getting this information out there: on social media, to the mainstream media, to patient navigators, nurses, support groups, social workers, and the public. Engaging the people who can best spread the word is the most important step, because as the voices get louder and more numerous, Congress will be more likely to act. Patient voices speaking louder to health care executives can also help. Women filling out their surveys that the hospitals provide, letting the health care providers know they have not given enough information- those patient satisfaction numbers are the only thing catching the attention of health care executives. So let ’em have it! Thank you for your beautiful writing and your passionate work on these issues.
Thank you Alene. I appreciate you saying that about both fears and solutions being addressed. I cannot claim to be an educator without a presentation of the facts and a suggestion for moving forward with solutions. I have never been a politically active or for that matter politically interested individual. In this instance, it has taken my passion to unleash my interest in working to get this bill passed nation wide for the sake of educating women. I know that there is much on the agenda for lawmakers and law passers. But, our voice cannot be subdued until we pass this bill. We cannot let their lists and their agenda curtail our mission. I believe we are in an ideal time with social media to tell our stories and to do our best to educate. I hope that all of those interested in using the various venues in social media approach it with an educated, empowered and compassionate voice. I see those qualities in your work and I am glad to have the opportunity to share and provide this information to wonderful professionals like yourself. Thank you for your fine response!
Terri, totally agree that information is extremely important. Though I had fairly complete orientation to the way my cancer was to be managed, it happened on the same day as my first infusion that sent me spinning, wiping everything from my mind. Second problem was moving right away to branch clinic that didn’t know what all I had been told but assumed I should know and wouldn’t talk to me.
It took the whole 6 month treatment period to get information I needed to feel comfortable. By then of course everything was a mess and I’m really trying hard to reclaim enough of my controlled self to go back and explain where THEY screwed up. It may not suit their professional self image to admit mistakes were made but without input from patients nothing will improve.
It takes a lot to deal with the diagnosis but to remain clear-minded through the treatments and be your own advocate takes extra energy that is not always there. I hope you are doing well. Information is power.