Musings of a Marfan Mom

Vicky’s Story, Part 2: Breast Surgery, Reconstruction, and Radiation Therapy in Marfan Syndrome

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Here are part one and part three of Vicky’s breast cancer and Marfan syndrome series.

It was 1995, and I needed breast surgery for cancer and an aortic root replacement for a growing aortic aneurysm. Which had priority?

In my case, the urgency of cancer surgery trumped the aortic surgery, so I underwent mastectomy plus implant reconstruction, with careful monitoring of my blood pressure during surgery to protect the aortic root aneurysm pulsing inside my chest. It was reassuring to speak directly to the anesthesiologist about the aneurysm before surgery. He discussed specific precautions with me to prevent its enlargement, dissection (tear), or rupture. Just before surgery, an arterial monitor (arterial “line”) was placed in my arm to keep a close eye on the blood pressure, to prevent spikes that could weaken my aorta; this was removed the next day.

The question of reconstruction using an implant versus my own tissue was definitely affected by having Marfan syndrome. The various reconstructive procedures that used a woman’s own fat/muscle to create a new breast (TRAM, latissimus dorsi, or gluteal muscle) all seemed to depend on strong, healthy connective tissue. These used a muscle with its overlying fat and attached blood vessels, tunneled under the abdominal or chest wall (or both), to nourish the transferred tissue in its new role as a breast.

I was concerned that my Marfan connective tissue would not be strong enough to hold this kind of tissue reconstruction in place. I also thought that uprooting and relocating a muscle, wherever it came from, was asking for trouble in a body that probably couldn’t adapt very well to lost muscle mass. And then there was the fact of my upcoming aortic surgery. Knowing an open chest surgery was to follow, I wanted to avoid having still-healing major abdominal incisions, or blood vessels from the reconstruction that lay in
the way of the cardiac surgeon. In the plus column for implant reconstruction, I liked the idea of less time under anesthesia while on the operating table and less recovery time once off.

So, I chose an implant reconstruction. The cosmetic result was fine, even if not a perfect 10, and my beleaguered connective tissue surprisingly has held that original implant in place all these years. This worked well for me, given the options available at the time.

But newer methods now exist. These transfer a so-called “flap” of fat and blood vessels – no muscle used – to create a new breast. Such reconstructions, with names like TRAM flap or DIEP, might work for a woman with Marfan. The key here is that no muscles are sacrificed in flap reconstructions. Instead, to nourish the transferred tissue, delicate microvascular surgery connects small chest blood vessels to vessels in the flap to keep it alive, and it heals beautifully, a reconstructed breast. Yes, it takes more time under anesthesia to do than an implant, and yes, it takes more time to recover from as well. But if you are a woman with Marfan and a stable heart and aorta, it may be an option for you — certainly something to discuss with a plastic surgeon specializing in breast reconstruction, and your Marfan clinician.

After surgery, my breast surgeon recommended radiation therapy on that side to treat any remaining cancer cells at the surgical site. Unfortunately, radiotherapy was not yet advanced enough to narrow the beam and avoid irradiating aorta and sternum (breastbone). My aortic surgery was up next. Radiation can interfere with tissue (bone or soft tissue) healing. After consulting with my Marfan cardiologist and the cancer radiologist, the breast surgeon understood that my sternum or the aorta itself might be damaged with radiation, and fail to heal properly after aortic surgery. So, we chose not to do radiation therapy. Luckily, radiation therapy has become much more targeted with the introduction of new technologies, so discussing with your medical team strategies to avoid irradiating the sternum and aorta might be a good way to go.

The opinions offered at Musings of a Marfan Mom are for informational purposes only and are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding Marfan syndrome and any medical condition. Never disregard professional medical advice or delay in seeking care because of something you have read here.

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One Comment

  1. Dear Vicky,

    First I want to honor your courage and generousity by sharing your experience with all of us. I would love to communicate with you. I am 43 years old and have Marfan Syndrome, I will also go through double mastectomy with skin sparing reconstruction using Alloderm. So I will have about 3 months of treatment, including different stages, skin expanders, nipples reconstruction, silicone implants, 3-D Tattoos, etc.

    Feel free to e-mail me and best of luck to you 😉


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