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Where are the survivorship studies?

BY KATHY LATOUR | DECEMBER 7, 2012

The answer to the headline is that there are few. And for advocates such as Elissa Bantug, MHS, it's irritating but not surprising. Elissa, an SABCF advocate for this year's SABCS, is the program director for the Breast Cancer Survivorship Program at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center in Baltimore. She is used to some clinicians' attitude that issues after treatment are not their concern – their job is keeping the patient alive.

"Changing provider views on survivorship takes time. We all want what is best for our patients but sometimes delivering comprehensive care during treatment and throughout long-term survivorship is a challenge with many competing priorities such as time, space, manpower and money."

For Elissa, the issues post-treatment are very real and have been for eight years. After finding a lump in her breast when she was 21, Elissa had to search for more than eighteen months for a doctor who would order a mammogram for her. Her first diagnosis came at 23 in the midst of full time graduate school, work at the National Institutes of Health and motherhood to a toddler. Shortly after diagnosis, her marriage ended. Treatment left Elissa suffering from a variety of medical and psychological side effects including fatigue, sleep disturbances, menopausal symptoms, range of motion issues, weight gain, depression, and sexual dysfunction.

Then, almost exactly a year after she finished radiation, she had a recurrence in the same breast. She had been dating her current husband for only a few months and, as she says, "this one was a keeper."

Her focus, like many in the survivorship field, is getting more support from providers that encompass both medical and psychological care after treatment. Elissa uses the term "patient activation" and thinks it is critical that we give patients the necessary to tools to thrive after cancer. This includes providing education, resources, and services for issues of survivors such as sexuality, cognitive issues, fertility, neuropathy, retuning back to primary care, depression and late effects such as second cancers and cardiac issues.

"You ask most women whether their oncologist brought up sexuality and they start laughing," she says. "Doctors just don't see that as their problem."

Many providers feel that if they do not have the answers to solve the problem, it is not worth bringing up. Elissa tries to encourage providers to "open up the dialogue and at least ask patients about pertinent issues that affect their quality of life. If you do not have the answer or do not feel comfortable with these discussions, find someone in your practice that can . . . we have to do more beyond the removal of disease."

Elissa thinks survivorship should be addressed at the beginning of treatment by looking at how patients can be involved.

"I don't want to wait until patients gain 20 pounds and are eating anything they want and they quit their job because they can't get off the couch," she says. "If we give patients the right tools before treatment begins, hopefully we can minimize some of the many issues cancer can create such as weight gain, sleep issues, and physical inactivity.

To help her patients Elissa has created a number of internet educations programs inckuding videos.

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COMMENTS

I am an anomaly, diagnosed stage 4 in 2005 with tumors in both breasts and the liver. What's unusual is that after treatment - back-to-back chemo, radiation and a double mastectomy - my cancer never came back. I have never felt healthier in my life -- so much so that I began to wonder if I was ever really stage 4. The spot on my liver was never biopsied, and it was gone for good after the second chemo treatment. My oncologist believes that the original diagnosis is correct. She says that the fact that the tumor in my liver went away after chemo, proves it was cancer. But I have doubts. Chemo drugs are really strong. And at the time of diagnosis, I was drinking waaaaay too much. What wouldn't the chemo kill?

Whether or not I was actually stage 4, as far as I'm concerned, is moot. What's important to me is that because I'm in the stage 4 category, I am monitored very, very carefully. We all thought the spot on the last CT was nothing, but we did a follow up in 3 months, to make sure. It was nothing.

To someone like me, survivorship is taking the best possible care of myself and doing the called-for blood work every 4 months. But at this point, I feel like a bit of an anomaly. I hope the feeling lasts forever.
- Posted by Elaine Jesmer 12/13/12 4:47 PM

s a survivor of multiple cancers, including breast on both sides I wonder how much oncologists have to shut off their emotions to survive in this occupation and that is why we don't get much support...

With the second breast cancer dx, I was told (at the time I was told I had BC on the other side), "Why are you crying? It's only breast cancer. It's no big deal. You've already had it before so should know that". Sigh.

As patients we are expected not to show our emotional distress (I was fired by one doc due to being depressed - untreated at the time, suffering from anxiety and being angry I had decided against chopping both of them off at BC time one). In fact I got a second cancer dx later that same year (that cancer has no cure) and again all my doctors don't want to see any evidence of distress, worry, anxiety, depression...

I was told by the first BC reconstructive surgeon I saw (didn't use him in the end) for the second BC that I wasn't grateful enough - all his patients are grateful; rather I was angry and upset. Um yup sure was angry (and in my case this was part of depression) and upset, and upset that I would have to choose a reconstruction that I had rejected the first time around. Why the heck are we supposed to be grateful?????

Don't even get me started on scan and (for me in the past) mammogram anxiety and how providers respond to that.

It is unrealistic that patients can completely control their emotions in the middle of a devastating disease, will be upbeat, grateful, not upset the doctor because we are showing our emotions and struggling... if they don't want to deal with it, fine but don't condemn me because I am not coping well. Set up a team approach so you can send me to someone on the team who is willing to deal with the emotional side of a dx like this.
- Posted by Liz 12/14/12 11:45 AM

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