Metastatic breast cancer patients receive support online

In In The News by Barbara Jacoby

By: Denise Dador


Experts estimate at least 150,000 women are living with metastatic breast cancer. For most, that means lifelong treatment to keep the disease at bay.

It can be extremely isolating; often, family and friends just don’t understand. Now, local researchers have found a way to help: giving women a way to reach out online to get support from all over the world.

Keeping up her own personal blog is a new adventure for 67-year-old Rae Donin. The story of her online chronicles begins in 2009 when a mammogram revealed a mass in her left breast.

“It was like, ‘I’m really sorry to tell you but you have breast cancer,’ and this whole thing was malignant plus under the arm. It was awful,” said Donin.

Donin underwent a mastectomy, chemo and various hormone therapies. But the cancer returned.

“It’s never going to go away,” said Donin. “The word ‘cure’ is not in the lexicon.”

“It can be very difficult, and women often are in treatment much of the time. That means they really need support,” said Annette Stanton, UCLA professor of psychology and psychiatry.

But it’s hard to keep asking for help, and many patients feel misunderstood.

Stanton has found setting up patients with a personal website through UCLA’s Project Connect helps with healing.

“Lower depressive symptoms, more life appreciation, lower feelings of loneliness,” said Stanton.

“It has the calendar function where you could put your appointments on there,” said Dr. Barbara Ganz. “I need a ride on this day, and maybe friends who are reading your blog could volunteer.”

“It’s even more meaningful now to be able to reach out to my friends,” said Donin.

Researchers are now looking for more women like Donin to enroll them in a study to find out if being part of an online community with other women living with metastatic breast cancer can be beneficial.

Study participants attend a three-hour class to create their personal website.

“I sit down with this blog and I just have a ball now,” said Donin.

Expressive writing is therapeutic for Donin, and rather than making several calls a day, in a few clicks she can educate and keep her loved ones up to date.

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