Breast Reconstruction Fears After Mastectomy

woman holding breastsBreast Reconstruction Fears After Mastectomy

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 that 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 that 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 since that is who would be reviewing the results of the biopsy with me. I had been to see one about five years previously to have a benign cyst removed close to my areola. I was very impressed with the surgeon so asked to schedule the results of my CNB to confirm whether I had cancer or not with that surgeon.

I walked into her 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 so 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 that a double mastectomy was in my surgical plans. I sat and absorbed the information.

When You Should be Told About Reconstruction Options

The information I want to focus on in this post is what she told me about breast reconstruction. That day, before we even knew the exact course of action, yes, that very day 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 used a woman’s tissue from her tummy area to form a new breast and that 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 AlloDerm. Although I glanced through that pamphlet I knew, with certainty, that if I was going to be facing a mastectomy and possible reconstruction for me using my own tissue was the only way to go.

That was before I knew about the rigors of autologous (made from 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. that even performed the procedure; before I spent long hours researching the credentials and success rate of these specialized surgeons. I was a purist and didn’t want anything foreign in my body. I just knew.

I was lucky. I was given that information immediately by my well-informed breast surgeon. Additionally, it was seemingly a decision I didn’t have to grapple with much, short of the hours of research and planning that would ensue realizing that 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? I would sum it up here:

1. Lack of information from their surgeon, oncologist or primary care physician

2. Lack of financial support 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.  That is only the beginning and now the implementation begins through the office Health and Human Services.  My hope is that more women are given the same opportunity that 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. This is travel and lodging assistance I did a quick search on that may help.  I have additional resources listed on my own 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 will vary depending of the type of reconstruction you have.  Recovery for implant surgery generally takes a shorter period of time than autologous surgery.

5. Each of us is individual in this regard. 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 would stand firm in the belief that most notable hospitals and surgeons work hard to control pain after any surgery. Here is some information reported about DIEP flap surgery and pain.

Unlike the TRAM flap, the DIEP flap preserves all the abdominal muscles. Only abdominal skin and fat are removed similar to a “tummy tuck”. Saving the abdominal muscles means patients experience less pain, enjoy a faster recovery, maintain their core strength long-term, and have a lower risk of complications.

~PRMA Center for Advanced Breast Reconstruction

6. Again, this will have to be addressed on an individual basis. I can only tell you how very fortunate I have been to be blessed and have the love and support of my family and friends throughout my journey.

7. My outcomes were beyond my expectations. I went to a skilled, experienced surgeon with a very high success rate. I encourage you to seek an equally successful surgeon.  I have listed a few on my resource page.  Don’t hesitate for one minute to ask the questions I placed in the important items to be addressed directly above the list of these surgeons.

Additional Fear Factors

Other fears involve the concern about disruption with cancer treatments.

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.    ~ Huffington Post

Additionally the interference with further screenings after reconstruction is a concern to some women.

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 can only 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 of 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 that decision making process.

This post was updated May 18, 2016.

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.

6 Replies to “Breast Reconstruction Fears After Mastectomy”

  1. Marlene

    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.

    • Terri Post author

      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.

  2. Alene Nitzky

    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.

    • Terri Post author

      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!

  3. Scott Johnson

    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.

    • Terri Post author

      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.

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