When a person is faced with a major illness care is needed for more of the body than the disease. Financial concerns, the often overwhelming schedule of appointments, and the emotional stresses are difficult to get through. Fortunately, this has been recognized as a critical part of care and improved support is now available and affordable in many areas.
"When I was first going to the doctors, I mean I had my mom, my sister Sharon went and everybody took notes because I’d be sitting there going I have no idea what you’re talking about. You shut down real quick."
I spoke with breast cancer survivor, Kat Forsythe.
"I mean, I’m sitting here right now and I can’t believe I went through all of this stuff because between my family and Sharon took the reins. If it wasn’t for her my financial issues would have been out of control. And that’s where Healthy Living Partnership came in also. They came to me at work and helped fill out paperwork and the next thing I knew I had emergency Medicaid for five years."
(Beth Slater, a representative of the Healthy Living Partnership in New York State)
"So the good thing about our program is if somebody says oh, well, if I actually had a diagnosis what would I do? I wouldn’t be able to pay for it anyway. And the great thing about Healthy Living Partnership is if you are diagnosed and screened through our program you may be eligible for a program called the Medicaid Treatment, which would allow you to have Medicaid during the course of treatment. The eligibility guidelines are much different than Medicaid for people who fall between the cracks and may not be eligible for Medicaid or don’t have insurance, so people may be eligible through the program as well."
(Kat Forsythe) "Just knowing that there is somebody that’s got your name on file; they know you’ve got a history; they know you need mammograms; they know that you’re uninsured and they can pull that file out and say, well, we’re going to call her just to make sure she doesn’t slip on this."
"A woman has family, friends to talk to; they have their doctor to talk to. We also set our patients up with the Stay Healthy Center nurses," (Susan Kost, Director of the Breast Care Center at Wilson Hospital in Binghamton, New York). "We have a Breast Cancer Companion program where the nurse will call patients periodically throughout her course of treatment at key moments like right after she visited the oncologist or maybe just before she visits the oncologist to help get a list of questions to ask. The patient can also call her nurse in this nurse companion program so it’s a two-way calling system. We like to follow our patients that first year because I think there are gaps in time where women just need to talk to another woman and get some questions answered or maybe to a nurse who she feels very comfortable with that knows her. And we can do this through phone calls."
Tell me about the system called Nurse Navigation.
"Nurse Navigation is a concept that a patient will come in and nurses will follow her through. She’ll come in for the test, but the nurse will continue to guide her each step of the way. It was really pioneered in breast centers for breast cancer patients because there were so many hurdles patients had to jump. They had to get through the diagnostics and then through biopsy and then move through surgery, radiation, and chemotherapy. And while they had wonderful doctors working with them every step of the way sometimes there were gaps of time when nobody was with them and they felt uncomfortable calling. So Nurse Navigator, what we do at Wilson Hospital, is if additional testing is needed our nurses will call her, will gently explain the reasons why, will bring them back quickly. It takes us usually a day or two to get them back and we believe the speed of that helps with the anxiety. While she’s there we’ll do the mammogram or the ultrasound. We’ll have the radiologist read it and give her the results right then and there. Again the anxiety is reduced because we know what we’re dealing with. We try to look at every step of the way of imaging to diagnosis and make it a very sensitive, caring place for a woman."
" My name is Bob Riter and I’m the Associate Director of the Ithaca Breast Cancer Alliance. I got involved with breast cancer work because I have breast cancer. I was diagnosed 11 years ago now and I found a small lump under my left nipple one night. I was just in bed scratching my chest and I felt something that felt like a pencil eraser. I just thought that seemed odd, but didn’t give it too much thought. But then I had some bleeding from that nipple. It first really surprised me because I didn’t know that men had a working orifice in the nipple and suddenly I had blood coming out. So it surprised me. Of course, I went to see my family doctor very quickly and he was good. He said that although it’s rare men get breast cancer too and he said if you were a woman with these symptoms we’d take it seriously and we will for you too which was really good. I’ve talked to some men who did not get that response. It’s essentially the same disease. In fact, under the microscope you can’t tell the difference. And, for the most part, treatment is the same, prognosis is the same, it’s just much more rare in men. People shouldn’t go through cancer alone because it’s incredibly stressful. Cancer affects so many different people."
"I think a lot of pats on the back should be going out to care givers too." (Kat Forsythe) You know, Sharon went through watching her mother slowly decline from it and then I come up with it. You know, it’s just opening a whole new can of worms for her."
(Kat Forsythe’s friend and advocate Sharon Solomon) "My mother’s gone 14 years and it’s still too painful and difficult for me to talk about it, what we went through. She was sick for two years and at the end, the last six months of her life my sister and I took care of her every day; she was bedridden."
"It could take as much as three years for the care giver’s immune system to return to normal after taking care of someone who has passed on like that. That’s how much it compromises your immune system on the caregiver from the stress of it all; you know, just mental, physical. And I remember the doctor said if you want to do this, you know, it’s fine. Like I said we went home with hospice and my sister and I taking sole care of her. And he said there will be many nights that you’ll go out on the porch and just want to scream until you can’t scream anymore. Because he said it is not easy. But that’s OK."
"It’s the most definite, all-defining thing to happen to somebody because you don’t just get cancer everybody around you gets it too."
Support groups for both care givers and patients are available through the American Cancer Society and many hospitals.
"One of the important questions is simply how can we help you? Is it educational; is it a support group?” (Bob Nugent, Senior Director of Cancer Control at the American Cancer Society’s Eastern Division.)
"We have a program called Reach to Recovery where we match diagnosed breast cancer patients with folks who have had the diagnosis and have been through the treatments. So it is a real connection. Our facilitators are trained to listen and to be able to interact with those newly diagnosed patients and it’s a healthy and positive experience for both sides. One of the important things is as you are diagnosed or a newly diagnosed patient please know you are not alone and there are people out there who are willing to help you and talk. I think that is one of the more difficult challenges of the newly diagnosed to reach out and really take a deep breath and ask the question now who do I talk to and where do I get information. And that’s what the American Cancer Society is really set up for."
Series produced by WSKG’s Kathleen Cook, with funding provided by a grant from the Susan G. Komen Foundation.