Longtime Ovarian Cancer Survivor Sings a Song of Hope

It was a bumpy road for Anne Sandstrom at first: after dealing with a stage IIIc ovarian cancer diagnosis, she had two relapses in a three-year span. But finally, treatment worked, and Sandstrom has enjoyed 16 years in which her disease lay dormant — enough for her oncologist to declare her “graduated” in 2017. The 62-year-old musician and author no longer needs to come in for checkups, not even annual ones.

So why is Sandstrom continuing to talk, write, and even sing about her cancer journey, when her doctor has given her the all-clear? As Sandstrom sees it, this is her way of giving back. By spreading the word that late-stage ovarian cancer is not always an incurable or insufferable disease, she aims to provide hope to other patients that their future can also be bright.

 “When my doctor told me, ‘you’re free; you don’t have to come here anymore,’ I started to cry,” says Sandstrom, whose book “Trials” covers her experiences on different clinical trials — some during her treatment and some since her last remission, in hopes of providing caregivers and researchers with more insight into ovarian cancer. “But I never considered stopping doing everything I could to help my doctor and everybody else learn as much as they can from me.”

Sandstrom’s doctor is Ursula Matulonis, MD, chief of the division of Gynecologic Oncology in the Susan F. Smith Center for Women’s Cancers at Dana-Farber. While ovarian cancer remains a difficult disease to treat, especially in its later stages, treatment options for the disease have rapidly expanded. Researchers now have a much better understanding of the molecular forces at work in ovarian cancer than they did before, owed in large part to research that comes out of clinical trials, Matulonis says.

“Anne and her journey are a remarkable example of perseverance and extraordinary timing,” says Matulonis. “We were really just starting to test immunotherapy approaches for ovarian cancer when she received the vaccine.”

It took several tries for Sandstrom to reach this point. After her initial diagnosis in 2000, she underwent tumor debulking surgery and chemotherapy, which put the cancer into remission. But this lasted just six months.

 A phase II drug trial, and then more debulking surgery, wiped out the cancer again; again, it returned.

In 2002, after asking Matulonis “What else have you got?” Sandstrom opted for a phase I vaccine clinical trial. Although there was a good immune system response, the cancer came back once more.

Then came a breakthrough. A third debulking surgery yielded enough tumor tissue to create a new vaccine from the tumor itself, and Sandstrom was administered the GVAX vaccine into 2003. She has shown no evidence of disease since.

Today, Sandstrom is feeling well and continuing hew work as a singer-songwriter in the Joni Mitchell mode. She performs alongside her husband, John Loretz, at venues in the Greater Boston area — and only in recent years has she been able to do so with zero anxiety.

“I used to be very nervous going on stage; I would be too nervous to eat,” Sandstrom says with a laugh. “After going through diagnosis and treatment, facing a crowd was no longer a big deal at all.”

Her cancer experience has even inspired Sandstrom’s lyric-writing. One of her favorite original songs to perform, called “Outside,” (see sidebar) focuses on her cancer experience. It gives Sandstrom a chance to share her story with others, as she did in writing her book.

“I’ve recognized a strength in myself that was always there, waiting to come out,” says Sandstrom. “Now, in sharing it with others through my music, or my book, or my part in trials, I am spreading the word.

“If I can help one person the way I was helped, it’s worth it.”

Outside

When I was your age I died
Nobody noticed or cried
Now they think I’m so brave
To crawl out of my own grave
When I was your age I died

I would just drift with the tide
Nothing to do or decide
Breathing in and out
Wavering through days of doubt
I would just drift with the tide

I could only survive
Living a lie
Just getting by… outside

I tripped over love like a stone
He took my hand and took me home
Now in the mirror I can see
Somebody so real – me
I tripped over love like a stone

I wasn’t erased
Replaced or ignored
An invisible face no more

When I was your age I died
Nobody noticed or cried
Now they think I’m so brave
To crawl out of my own grave
When I was your age I died