Today’s surgical world has made tremendous advances – from shorter and less invasive operations to more precise surgical procedures.

In the past, a large abdominal incision was necessary to treat a diseased gallbladder but now, four small incisions will do the job – better and quicker – using a laparoscopic camera and specialised tools.

Cancer treatments, too, have scaled new heights. They have become increasingly targeted and refined. Yet, most breast cancer patients are defying medical modernity, and trending the opposite direction.

Recent reports show that from 2002 to 2012, the number of American women with invasive cancer in one breast who chose double mastectomy has tripled.

While some link the change to the widespread “Angelina Jolie effect”, the choice springs from a myriad of factors – financial, emotional, social and practical – that pedal the swing in treatment options. After all, Angelina’s acclaimed preventative removal of both breasts only became public news in 2013.

The trend also seems to be US-specific. In a global trial on triple-negative breast cancer, Dr Mehra Golshan, a breast cancer surgeon at Brigham and Women’s Hospital, found American women were four times more likely to get a double mastectomy than women in Berlin or Seoul, South Korea.

Dr Kevin Hughes, a breast cancer surgeon at Massachusetts General Hospital, is witnessing a reversal in treatment options. When he was a surgical resident in the 1980s, mastectomy was the only surgical procedure for breast cancer; before the switch to lumpectomies during the 1980s and 1990s. For him, it is going one full circle and back to mastectomy.

“In the last 10 or 15 years, even women who are eligible for lumpectomy instead are asking for a bilateral mastectomy,” he said. “And that is the trend that’s been really been increasing.”

According to a 2016 analysis, approximately 1 in 8 women with invasive cancer in one breast now get both breasts removed, and this figure rises to nearly 1 in 4 women for those under 55. About half of women under 55 get lumpectomy, and the remaining 29% opt for single breast removal.

Sarah Hawley, a health outcomes researcher at the University of Michigan, believes that “it tends to be a procedure that is associated with women who are younger, who are Caucasian, and who are more highly educated compared with their counterparts”.

An intensely personal decision, despite no promise of a longer lifespan

For 37-year-old Crystal Collum, it was an agonising decision when she discovered a lump on her breast while showering. She wasted no time and proceeded with chemotherapy. The dilemma came right after her treatment – the choice between having a lumpectomy or the complete removal of both breasts.

“I really could not think about anything else. I really couldn’t. It consumed me,” said the mother of three.

“There’s so many things during this process that you have no control over, and then the biggest decision of the entire thing is kind of dropped in your lap and you’re like, no, I don’t feel like I should be making this decision.”

She did her own research and talked to friends and family, and after a few weeks, she decided to have a double mastectomy with reconstruction. It was clear that she would not want to be reminded of the big C anymore – she wanted to be over and done with, and never to look back.

Double mastectomy is a massive surgery. But, while bigger may not be necessarily better in terms of survival, scientists and surgeons believe it is all about one’s perspective and the choice that follows.

“From a medical standpoint there’s no data that removing the other breast improves your survival,” said Dr Judy Boughey, a breast cancer surgeon at Mayo Clinic and one of Collum’s surgeons.

“I always make it very clear to patients, I am not medically recommending that you need to have the other breast removed.”

Boughey felt many patients do not understand that although removing a healthy breast averts cancer that might arise there; it does nothing to ensure the initial breast tumour has not spread to other organs or to bones – which is the real threat to survival.

A double mastectomy is a more gruelling surgery and as most women opt for reconstruction, the procedure with reconstruction takes four to seven hours of surgery and at least one more reconstructive surgery at a later date. Comparatively, lumpectomy takes around an hour and the patient gets to go home the same day.

Many surgeons feel the trend is not heading towards something more positive, especially when it does not guarantee that mastectomy will save or prolong lives.

“It’s absolutely not wrong, so it’s absolutely a choice, but I think it’s just being done too frequently in the United States,” Golshan said. “My number one concern is them living, and if I can’t say it’s living longer, then why would I say that they should do it?”

Why opt for complete removal – when it may not prolong survival?

Evidently, scientists and surgeons are constantly baffled when a patient opts for mastectomy despite being presented facts and options.

The decision is an intensely personal one, though Susan E. Clare, a breast surgeon and researcher at Northwestern University’s Feinberg School of Medicine in Chicago, found in a survey that women who choose double mastectomy are strongly influenced, and heavily reinforced, by their social networks, especially family and friends.

Boughey had told her patients that double mastectomy “is not going to improve your survival. It’s not going to improve your outcome from this index [original] cancer. You can’t breastfeed after having this done. There will be body image changes, sex life changes.”

"But at the end of the day, the final decision is the woman’s,” she said.

Sometimes, the choice reflects one’s decision-making style and individual values. A woman who is more inclined to logic and reason is less likely to opt for the big surgery whereas another who wants to be in control of her own decisions is more likely to choose double mastectomy. For many patients, it is about emotional well-being. In a recent study, more than half of women with early-stage cancer in one breast consider double mastectomy.

According to Boughey, one reason lies in the cost. Since the 1980s, most US insurance companies were required to cover all “symmetrisation surgeries” for women who have breast cancer – a category that includes double mastectomy.

In 1998, the Women’s Health and Cancer Rights Act required most health plans that cover mastectomy to pay for breast reconstruction. Hence, a double mastectomy and reconstruction would be protected by insurance.

Another possible reason commonly cited is the functionality of breasts. Apart from its aesthetic feminine appeal and its function in breastfeeding, breasts are not pivotal in keeping one alive. Hence, removal of a healthy breast would not adversely affect one’s health.

Hughes said that while a double mastectomy is a bigger surgery that doesn’t increase survival, it also doesn’t decrease survival, and comes with “very acceptable” surgical risk for healthy women. That means, he explained, surgeons, even those who think the procedure is happening too often, are willing to perform it if it’s what a patient wants.

Breast reconstruction is making remarkable strides. And today, women can still have more natural-looking reconstructed breasts as surgeons can now save breast skin (and even nipples). Also, the first stage of reconstruction can be done in the same surgery as the double mastectomy.

Seeking that total peace of mind…

Many women see it as a once for all decision, and do not want to be burdened with the fear of cancer creeping back on the other breast. Many dread annual check-ups like mammogram, and some wish to avoid radiation treatment, which is often given after lumpectomy.

“Most of them say they never want to experience this again. And that’s the only way they can never experience it again,” said Hughes.

“I can likely screen them, there’s a high probability they won’t have cancer again, if they have cancer, there’s an extremely high probability that we cure them of the next cancer, but it’s not 100% and they want 100%.”

For Collum, it was just the need to have a clean break from the disease.

“Once I got that diagnosis, my breast ceased to be a part of me. I felt like they were fighting against me and I felt almost disconnected from that part of my body and I just needed it gone,” she recalled.

“Once I decided, I’m going to have to do this, no matter, because in my gut this is what I feel is best for me and for my family, I felt absolute peace about it,” she recalled. “Once I said out loud, this is what I’m going to do, I never wavered again.”

Curtailing the double mastectomy trend, breast surgeon Clare believes, will take a sophisticated, multimedia educational campaign that “interviews women who are pleased with their outcomes, and women who aren’t.”

Even her own perspective has somewhat changed. “When I was younger, I was uncomfortable taking off something that was healthy. But then I evolved into saying maybe it was necessary for the patient’s peace of mind,” she shared. MIMS

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