Regret after risk-reducing surgery: what the evidence shows | CION Cancer Clinics

Most people who have risk-reducing surgery say, when asked years later, that they would make the same choice again. Regret is uncommon, but it is real for a smaller group, and research shows fairly clearly what tends to lie behind it.

What the studies have looked at

Most research has followed women who had both breasts removed because of a BRCA fault or a strong family history. Some studies have also looked at ovary and tube removal. Researchers ask about satisfaction with the decision, body image, sex life and worry about cancer. Across these studies, worry about cancer usually falls after surgery, and most women stand by their decision.

Where the evidence is thin

Most studies come from Europe and North America, are fairly small, and ask people years after the operation. Very little research has been done in Indian women, where family pressure, marriage and access to reconstruction can be quite different. So the findings are a guide, not a forecast for you.

What regret does not mean

Feeling sad about what was lost is not the same as wishing you had not had surgery. Many women grieve the change in their body while still feeling the decision was right. Both feelings can sit together, and neither is a sign that something has gone wrong.

Tell someone on your care team. Regret is a recognised outcome, and surgeons and counsellors would rather hear about it than have you carry it alone. Often the regret is tied to one specific problem that can be addressed.

If the problem is how you look or feel

Ask whether reconstruction can be revised, whether a different approach would suit you, or whether nipple reconstruction or tattooing is possible. Some changes cannot be undone, such as lost feeling, but shape and comfort can often be improved.

If the problem is menopause or sex life

Hot flushes, dryness and low desire can often be eased. Your doctor may discuss hormone treatment if it is safe for you, or other options if it is not. Do not start or stop any medicine on your own.

If the problem is how you feel inside

Low mood, anxiety or grief after surgery respond well to talking therapy. A psycho-oncologist, a counsellor who works with people facing cancer, can help even though you never had cancer.

If the regret is about the decision itself

Some people feel they chose too early, or chose for someone else. It can help to look back at what you knew and feared at the time, rather than what you know now. A counsellor can help you do that without blame, and help your family understand what you are feeling.