Going Flatter: Mastectomy Revision

If you’re not satisfied with your mastectomy result, revision surgery may be an option for you. Learn more at www.flatclosurenow.org | #goingflat #flatclosure #putflatonthemenu #revisionsurgery #breastcancer #mastectomy #breastreconstruction

Please note: revision results vary considerably - consult your surgeon for what you can realistically expect in your specific case.

If you find yourself disappointed with the look of your post-mastectomy chest, you’re not alone. Everyone’s chest contour (shape) looks different after mastectomy. If you go online, you may see pictures of people whose chests appear to be perfectly flat. Others may look lumpy or sunken. Still other people’s chests may have extra tissue that bags or sags. Why doesn’t everyone simply look, well, flat? Bodies are more different that we realize. Just like everyone’s head looks different bald -- some people’s heads are smooth and even, while other people’s scalps are kinda lumpy -- everyone’s chests look different without breasts.

Here are a few factors to consider:

Your anatomy determines the degree of concavity you will have after your mastectomy. Concavity is common and results from the removal of the breast tissue. Without the buffer of breasts, the building blocks of your chest -- your pectoral muscles, ribcage, and sternum -- are more exposed and may feel pronounced.

If you had tissue expanders at any point in your process, they may have damaged the pectoral muscles and underlying tissues.

The size and location of your tumor, plus the extent of lymph node removal, can impact the cosmetic outcome of your mastectomy.

If you had very large breasts or were large bodied, a skilled surgeon would have needed to take extra time to reduce the presence of extra (aka redundant) tissue. The more excess skin, the more difficult it is to get a flat result.

Your surgeon’s level of skill.

Your surgeon’s level of regard for your choice to go flat.

If your breast cancer treatment included radiation. Radiation can cause extensive scarring and adhesions that can distort or contract the chest.

Additional surgeries - for example, surgical treatment for wound healing problems or persistent seroma.

Live With It, or Get It “Fixed”?

If you are not satisfied with how your chest looks after either single or double mastectomy, your options are to either find a path toward accepting your body or to seek revision surgery. More surgery isn’t for everyone, either because they have health issues that make surgery extra risky or maybe they are just done with hospitals. In lieu of revision surgery, many folks find other ways to make peace with their surgical outcomes. Some options include:

Mastectomy tattoos to cover up and/or distract from scars
Pectoral exercises to build up muscle tone and improve concavity
Dressing your new body for your own personal comfort and style - wearing compression garments, loose-fitting tops to camouflage the contour or, conversely, embracing your chest as is and wearing clothing that doesn’t camouflage your chest at all!
Intentional emotional work, trying to make peace with your result, through mindfulness, art therapy, or other techniques

Alternatively, if you decide you don’t want to live with the outcome, you can pursue surgical repair — additional “revision” surgery.

An unsatisfactory mastectomy result can almost always be improved, often dramatically, with revision surgery. These surgeries are most often done by a plastic surgeon who specializes in breast surgery, though some general and breast surgeons also have the skillset.

The goal of revision surgery is to remove all remaining excess (“redundant”) tissue and create the best possible smooth, flat contour. Fat grafting or tissue transfer may be offered as ways to fill in areas of concavity.

Compared to the amputation of mastectomy, revision surgery is more of a nip-tuck situation. Oftentimes revisions don't require drains and the healing period is typically faster than with the original mastectomy.

Don’t downplay the emotional toll. It can be disheartening, even downright depressing, to find yourself in the position of facing additional surgery to achieve the result you were hoping for the first time. Be kind to yourself and seek support.

Most importantly, take your time to make a decision. Revision surgery can be performed months or years after your original mastectomy. Keep in mind that if you had your mastectomy recently and are facing radiation, many surgeons advise waiting at least a year to seek revision surgery.

In the meantime, you can do a lot to prepare. Seek out resources and information from organizations like Flat Closure NOW. Find and interview surgeons. Speak with others in the flat community about their experiences. Take the time to make the decision that is right for YOU.

Risks of Revision Surgery

Revision surgery has the same risks as most operations, including infection, tissue death, and blood clots. As with a mastectomy, revision surgery may also cause changes in sensation that may change over time, and development or worsening of existing lymphedema may also be a concern in some cases. Generally, revision surgery is a quicker procedure with a faster, easier recovery than mastectomy. Ask your surgeon about the medical risks in your specific situation.

Disclaimer: revision results vary considerably - consult your surgeon for what you can realistically expect in your specific case

Benefits of Revision Surgery

Unfortunately, very little data exists about the impact of revision surgery on patient quality of life. What we can say is that, anecdotally, people report feelings of relief and satisfaction with their decision to pursue revision. People who’ve undergone revision surgery have reported to us improved body image as well as lessening of physical discomfort and inconvenience caused by excess tissue. Remember: everyone is different. Ask your surgeon what you can realistically expect from revision surgery.

How Do I Pursue Revision Surgery?

Unless you want to use your original surgical team for revision surgery, you’ll need to find a new surgeon. Don’t hesitate to shop around. Look for a surgeon with a reputation for high-quality flat closures. (You don’t want to be the first patient for whom the surgeon has attempted this procedure!) Move forward with scheduling a surgery only when you feel heard and that your surgeon respects your wishes.

Finding a Surgeon

Flat Closure NOW is working to create a network of surgeons who offer flat closure and revision services. We have a growing list of patient-recommended surgeons, available online (in progress) at BSBreastCancer.com (run by FCN President, Sondra Price). These are surgeons, both general/breast and plastics, who were recommended by patients in the flat community.

These surgeons:

Respected the recommending patient and their wishes to be flat,
Were technically competent in surgical technique to achieve a flat result, AND
Did the best they could do give the patient the desired result

Consider going to a integrated breast care center. Breast health centers house both surgical oncologists AND plastic surgeons who specialize in breast surgery. Because all they do is breast care, the doctors and staff are well versed in dealing with the particulars of revision, including how to code these procedures for insurance reimbursement, which is important.

Some breast cancer patients who’ve opted to go flat have success going to plastic surgeons who specialize in gender confirmation surgery, also known as “top surgery.” Generally, these surgeons excel in flat closure techniques are are well versed in dealing with thorny insurance reimbursement issues.

You can also ask your local medical providers and cancer community centers/groups for recommendations. You may be met with confusion when you ask about “flat closure” - that’s why Flat Closure NOW exists, to #putflatonthemenu so that each patient doesn’t have to reinvent the wheel in order to get a result they can live with following mastectomy.

Interviewing Your Surgeon

Doing a little extra work upfront will help ensure you get the best possible outcome.

Communicate your goals clearly. Be specific. For example: you want a smooth, flat contour with your dog ears completely removed. You’d like your chest to appear flat when you’re in an upright position. Show your surgeon photos of what you want to look like. You can find lots of these photos in Flat Closure NOW's photo gallery.

Evaluate the surgeon’s response. Do they accept and respect your decision? Their response should be one of care and concern. And they should be able to explain how they will work to ensure you get an acceptable flat result.

If you detect hesitation, pushback about reconstruction, body shaming language, or anything that makes you feel uncomfortable, find a different surgeon.

Ask specific questions about technique - how they will achieve a flat contour in your specific case? (see the section below)

Listen to your intuition! If you feel uncertain about your surgeon’s competence or their commitment to producing an acceptable flat result, seek a second opinion.

Questions to Ask Your Revision Surgeon

Have they performed revision surgery for previous mastectomy patients who went flat? Ask to see photos of their work.

Will they be able to produce the result you want in one surgery? How likely is it that you will face additional surgery?

How will they address any special challenges in your case? For example, dog ears, puckering of the scar, excess tissue, concavity, etc.

Will they extend the incisions further on the lateral chest (under your arms) or use additional incisions in order to achieve a flat contour? Will this produce a different scar pattern?

How will they ensure the closure is tight enough to present a flat contour when you are upright, not just when lying down?

What can you expect in terms of recovery? For example, what is the likelihood of drains and what can you anticipate in terms of postoperative activity restrictions?

Tip: You can download a PDF of these questions here. Then simply print and take to your appointment!

Does Insurance Cover Revision?

With a few exceptions, the Women’s Health and Cancer Rights Act (WHCRA) of 1998 requires insurance companies to cover revision surgery for mastectomy patients. However, insurance companies still sometimes initially refuse to do so. Your new surgeon’s office should know how to code for the procedure correctly and be equipped and willing to do the legwork required, including appealing denials.

Unfortunately, many general practice plastic surgery offices will not accept patients seeking revision surgery, or will say that the procedure “is not covered.” This happens for several reasons. Most plastic surgery practices are fee for service - they don’t go through insurance, because elective cosmetic surgery typically is not covered by insurance. So the surgeon and/or office staff may not understand the law. Or, their office may simply not be equipped to deal with the often extensive insurance pre-authorization, billing, denial and appeal, and reimbursement processes. Lastly, these procedures are generally not well-reimbursed and so may not be very (if at all) profitable for surgeons - for some practices, it’s a business decision not to provide flat closure and revision services.

Flat closure and revision surgeries are, in insurance coding terminology, generally considered “adjacent tissue transfers,” with the specific coding dependent on surgical field size (original breast size). Flat Closure NOW is working, in collaboration with other parties, to formulate guidelines to help surgeons to code properly for both flat plastics/oncoplastic closure and revision surgery.

In the meantime, if the surgeon you interview initially tells you that revision surgery isn’t covered, unfortunately you will need to find another surgeon. Don’t give up!

WHCRA

Going Flatter: Mastectomy Revision

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