http://www.youtube.com/watch?v=OEdVfyt-mLw

February 1, 2012

Holly Gautier, RN, Program Manager of the Stanford Cancer Institute Supportive Care (left), talks about the Institute's new Survivorship Clinic with its manager, Kelly Bugos, RN, NP, MS.

Janelle O’Malley has been cancer-free for eight years, a long time since the removal of a malignant tumor required a complete hysterectomy, sending her into menopause at age 49.

She jokes wryly about not feeling like a cancer survivor because she didn’t go through radiation or chemotherapy, but the aftermath of that surgery defines her as one of more than 12 million Americans who have had cancer. More than half the 1.5 million diagnosed with cancer this year will also prevail beyond that pronouncement,  adding O’Malley to that growing population whose cancer often leaves lingering effects and is fueling a new dimension of cancer care – care for its survivors.

This month, the Stanford Cancer Institute opens its first Survivorship Clinic, at its Clinical Cancer Center, with O’Malley as one of its first patients. The clinic, which will focus initially on gynecologic cancer survivors, joins a small but growing number of such clinics, where all care is focused on wellness post-cancer treatment.  “There’s a whole body of knowledge, and more importantly, a whole collection of needs that cancer survivors have,” said Douglas Blayney, MD, the Cancer Center’s medical director. “Some are common across tumor types and some are unique to various tumor types. We are trying to meet those needs and serve those patients.”

“Our health care system is much more geared to acute rather than chronic care and we haven’t had a good transition back to routine care,” said David Spiegel, MD, director of Stanford’s Center for Integrative Medicine and a long-time researcher on the interaction between the psychosocial and physiological impact of cancer. “People develop significant issues after cancer – the question becomes how to live with this for the rest of your life,” he said. “We want to develop a program to provide emotional and medical support for people who are beyond very acute care. Survivorship care should be there from day one.”

The focus of care will be on those areas already known to be present for most cancer survivors: fatigue, anxiety, body image, sexual function and relationships. At Stanford, a clinic patient will most likely be seen by a nurse practitioner she has already gotten to know during the course of initial treatment, said Kelly Bugos, a nurse practitioner who is establishing Stanford’s survivorship clinic. Should a concern arise beyond those issues, that patient will be seen quickly by an appropriate physician.

Initial patients will be limited to those who have had gynecologic cancers, like O’Malley. “We’ve set this up so we will be seeing patients we’ve been following for quite a while, with the expectation that they are cured or have a chance for a long-term remission,” said Jonathan Berek, MD, director of the Stanford Women’s Cancer Center and an internationally-known clinician and researcher in gynecologic cancers. “The focus will be on issues important to them: health maintenance, screening for other cancers and the psychological and physical adaptations for someone who has gone through the trauma of being diagnosed and treated with a life-threatening disease.”

Such patients don’t need to be seen by their oncologists, Berek said, “but we’re not relinquishing them. This is an adjunct to their care that maximizes the quality of their care because they’ll have someone who can spend more time with them, go over tests, get them involved in support groups they haven’t been involved with and pay more attention to those needs not related to a cancer recurrence.”

Kelly Bugos, RN, NP, MS, will be managing the new Survivorship Clinic at the Stanford Cancer Institute.

“We’re ahead of the game because we have practice teams integrated around each patient’s cancer type,” Blayney said. “This means we will add to that team people with the special skills to meet our patients’ needs as they transition into survivorship, and weave them into the fabric of our care.”

Bugos has worked in cancer care at Stanford since 1989. “We’ve done a beautiful job of helping rid people of their cancer; the piece that’s been missing is helping them to return to wellness after treatment. It’s time for us to give people tools to make that transition and extend the treatment safety net a little bit longer. We know that when treatment ends, the cancer experience continues.”

Stanford’s Survivorship Clinic was developed after a year of study, site visits and discussions with experts from the LIVESTRONG Survivorship Center for Excellence Network. Established in 2005, it now collaborates with institutions like Stanford to create nationally-recognized standards and metrics of care. Stanford’s experience will become part of LIVESTRONG’s ongoing advocacy work in the field, Bugos said.

“The goal is to return to wellness, as defined by each individual,” she said. “To help focus our attention, and shape each visit, we developed a pre-clinic survey so we know what’s important to each patient. We want our treatment to be a partnership.”

“My path toward healing continues,” said O’Malley. “Once you have cancer, it embodies your spirit, your family, your friends, and your future.  I am extremely thankful that I am a part of the new Survivorship Clinic.”  

From the initial visit will come a plan, Bugos said. It will include when certain tests will be done and other relevant health issues to be addressed. Having a plan makes a difference. “Being diagnosed with cancer can make you feel out of control, but once you have a treatment plan, you can follow that plan,” she said. “Once that initial treatment plan is done, you can feel out of control again, so having a survivorship plan is important.”

Many of the resources Survivorship Clinic patients will learn about are part of supportive care programs and services at the Stanford Cancer Center and the Stanford Center for Integrative Medicine. The Survivorship Clinic also creates an additional layer of care opportunities through clinical research trials lead by Spiegel and Oxana Palesh, MPH, PhD. 

Spiegel’s research into the psychosocial aspects of the cancer experience dates back 30 years. It was among the first to show that being part of a cancer patient support group made a significant impact on quality of life during treatment. Now, Spiegel, Palesh and their Stanford colleagues are leading research into the treatment of sleep disturbance, which 80 percent of cancer patients develop. It often endures beyond the finish of initial treatments and can contribute to subsequent health issues. Shelli Kesler, PhD, another collaborator in Spiegel’s group, is looking at the cognitive dysfunction related to chemotherapy, sometimes called cognitive fog or chemo brain. “We have a couple of trials open and are starting others,” Bugos said.

“The good news about disrupted sleep is that it’s treatable,” Palesh said. Another area of interest is how to treat the anxiety that can remain even after a patient is found to be cancer-free, she said. “It makes sense that people are apprehensive; not all cancers have very clear symptoms. And it can be bittersweet: You’re finished with treatments and congratulated but still expected to come back for check-ups.” The higher survival rate after a cancer diagnosis can mean it’s less “scary than it was 20 years ago,” she said. “The science of survival is very new – we haven’t done a lot of research – but we now have the luxury of doing it. We plan to become a program that offers the latest and best evidence-based interventions for our patients.”

The survivorship clinic for gynecological cancer survivors is now open. For more information, please call the new patient coordinator for the survivorship clinic at the Women’s Cancer Center at  650-498-6004.

By Sara Wykes

About Stanford Hospital & Clinics
Stanford Hospital & Clinics is known worldwide for advanced treatment of complex disorders in areas such as cardiovascular care, cancer treatment, neurosciences, surgery, and organ transplants. It is currently ranked No. 17 on the U.S. News & World Report’s "America's Best Hospitals" list and No. 1 in the San Jose Metropolitan area.  Stanford Hospital & Clinics is internationally recognized for translating medical breakthroughs into the care of patients.  The Stanford University Medical Center is comprised of three world renowned institutions: Stanford Hospital & Clinics, the Stanford University School of Medicine, the oldest medical school in the Western United States, and Lucile Packard Children's Hospital, an adjacent pediatric and obstetric teaching hospital providing general acute and tertiary care. For more information, visithttp://stanfordhospital.org/.

 2Young-4GYN-Cancer 

Accent on Health Boutique

625 Steele Lane
Santa Rosa, California 95403
707  571-8842
www.accentonhealthboutique.com
A store for mastectomy forms and bras, post-operative garments, custom-fitted compression garments for lymphedema, wigs and head coverings.

A Lady’s Touch

800  227-2345 
404  320-3333
www.cancer.org
A nationwide, community-based volunteer health organization dedicated to eliminating cancer as a major health program.  ACS materials include pamphlets, brochures, booklets, and cards providing general information on pap tests and other cancer-related materials.  Supports research and conducts educational programs. 

American Cancer Society Marin County Unit

American Cancer Society Programs include

Cancer Survivors Network
www.acscsn.org
Web-based service for survivors, their families, caregivers, and friends that provides live online chat sessions, virtual support groups, pre-recorded talk shows, and personal stories.

Hope Lodges
Hope Lodges are free temporary housing facilities for cancer patients who are undergoing treatment and their families.  Provide guests with private rooms, kitchen facilities and, in some locations, transportation to treatments. Accommodations and eligibility requirements vary by location.  Call ACS to learn more about a specific facility.

Look Good … Feel Better
www.lookgoodfeelbetter.org
Cancer radiation and chemotherapy treatments can have a negative impact on patients’ appearance and self-esteem. The American Cancer Society program  helps cancer patients regain self-esteem and confidence in their appearance  in a non medical and supportive environment.  Licensed cosmetologists demonstrate make-up techniques and wig care while offering other tips to deal with the appearance related issues of cancer treatment. If you are a licensed cosmetologist or esthetician and would like to volunteer for this program please call 1-800-227-2345, or to reach the local office in Marin County, call 415-454-8466.

Reach to Recovery
Provides support for breast cancer patients. If you are a breast cancer survivor, one year out of treatment, and wish to provide support to someone going through treatment, please talk with ACS about becoming trained as a Reach to Recovery volunteer. Call 1-800-227-2345, or to reach the local office in Marin County, call 415-454-8466.

"tlc" Tender Loving Care
www.tlcdirect.org
A "magalog" (magazine/ catalog) of helpful articles and products for women coping with cancer treatment. Products include wigs, hairpieces, breast forms, prostheses, bras, hats, tubans, swimwear, and accessories.

Mark Wise for Wigs

Mountain View, California
888  989-3338 
650  625-1000
www.bentonmedical.com
A retail establishment that carries a full line of breast care products, bras, and lymphedema garments.

Bischoff’s Medical Supplies

800  311-3435  
404  498-1515
www.cdc.gov/cancer
CDC works with national, state, and local partners to create and implement successful strategies to help the millions of people who live with, through, and beyond cancer. Materials are available for patients, physicians, and health professionals.  Provides low-income, uninsured, and underserved women access to timely high-quality screening and diagnostic services to detect breast and cervical cancer at the earliest stages through the National Breast and Cervical Cancer Early Detection Program.  CDC enhances the growing knowledge about ovarian cancer by initiating research projects with partners, colleagues, and national organizations to help identify factors related to early detection of the disease, treatment, and survivorship.

Charle … A Hair Studio

35 Mitchell Boulevard #4A
San Rafael, California 94903
A retail establishment that provides sensitive solutions for hair loss due to chemotherapy/ radiation treatment.  Offers human and synthetic hair pieces and accessories including a line of sleep caps.

Charlotte Maxwell Complementary Clinic

Chinatown Public Health Center

Chinese Community Cancer Information Center

Chinese Community Health Resource Center

Nancy Bruning

Eyes on the Prize.org

www.eyesontheprize.org
Mission is to provide information and emotional support from the survivors’ perspective to women with gynecologic cancers, their families and friends, and healthcare providers.

Fertile Hope

www.gildasclub.org
Named for comedienne Gilda Radner, who died of ovarian cancer, the club's 30 U.S. affiliates provide support and education for all cancer survivors and their families.

Giving Voice

Gynecologic Cancer Foundation

800  444-4441 hotline
312  578-1439
www.thegcf.org
Established by the Society of Gynecologic Oncologists to promote public awareness about the prevention, early detection, and treatment of gynecologic cancers.  Seeks funding for programs which reduce the impact of gynecological cancers on the physical and emotional health of women and their families.

Hadassah

Hair Solutions

Healing Journeys

Life Beyond Cancer

800 813-4673
Financial assistance for hormonal and oral chemotherapy, pain and anti-nausea medication, lymphedema supplies and durable medical equipment. In partnership with the Susan G. Komen Breast Cancer Foundation.

www.mamm.com
The first magazine devoted to meeting the needs of women diagnosed with breast and reproductive cancers. Helps readers understand more about their diagnoses, improve their quality of life, and assess current treatments and new therapies on the horizon.

Marilyn’s Fund

710 4^th Street
San Rafael, California 94901
415  459-6245
www.marincil.org
Program for under-insured, low-income residents. Provides financial assistance with medical premiums and rent/mortgage payments.  Maximum allotment is $2000 per person. Offers benefits counseling, advocacy, referrals to resources, lists of jobs and affordable housing, and case management.  Public and private benefits counseling services for individuals diagnosed with breast cancer in Marin County.

Marin Community Clinic

250 Bon Air Road, Greenbrae
400 Professional Center Drive, Suite 424
Novato, California 94947
415  448-1500
www.marinclinic.org
Provides comprehensive primary healthcare services to uninsured and low-income residents in Marin. Mobilizes physicians, other healthcare providers, public agencies, and a network of community organizations to create an extensive healthcare delivery system serving more than 14,000 patients every year.  Monthly Breast Health Days are held on the first Saturday of every month for Marin Community Clinic patients (low-income, underinsured or uninsured women from all ethnic groups).  Participants receive clinical breast exams, breast health education, and a screening mammogram.

479 Entrada Drive
Novato, California 94947
415  883-3334
www.marinorthopedic.com
A retail durable medical equipment store with certified fitters. Provides a full line of mastectomy and ostomy products and lymphedema sleeves.

610  725-9790
www.mommyslight.org
Mission is to bring joy and comfort to children and teens by helping them keep alive traditions or simple pleasures they shared with their mothers.

Mothers’ Living Stories Project

National Asian Women’s Health Organization

One Embarcadero Center, Suite 50
San Francisco, California 94111
415  773-2838
www.nawho.org
NAWHO works to improve the health status of Asian women and families through research, education, leadership, and public policy programs.  Designed and implemented national health promotion campaigns and programs on breast and cervical cancer.

National Lymphedema Network

Planned Parenthood Federation of America

801 Montgomery Street
San Francisco, California 94133
800  230-7626 
Offers gynecological care, Pap tests, and breast exams.  Some Planned Parenthood clinics offer the HPV vaccine to protect against contracting the Human Papilloma Virus that has been associated with cervical cancer, vulvar cancer, and penile cancer.  Call toll-free number to determine if your local clinic provides these services.

866  237-5725  
616  855-4017
www.reelingandhealingmidwest.org
Offers fly-fishing retreat programs for women diagnosed with or surviving cancer.  The mission is to renew spirit and hope through fly-fishing, nature, peer coaching, positive camaraderie, and support.

Ross Valley Pharmacy

2 Bon Air Road #130
Larkspur, California 94939
415  924-2454 
Provides compression garments, sleeves, gauntlets, gloves, and bras for the treatment of lymphedema.  Custom fitting and standard sizes available.

312  235-4060
www.sgo.org
Purpose is to improve the care of women with gynecologic cancers by encouraging research and disseminating knowledge to raise the standards of practice and treatment.

Studio International

UCSF Ida and Joseph Friend Cancer Resource Center

1600 Divisadero Street
San Francisco, California 
415  885-3693
www.cc.ucsf.edu/crc
Supports wellness and the healing process by providing information and treatment options, emotional support, and community resources.  Free programs to bring patients together, foster community, educate patients about their diagnoses, and give them effective tools to navigate the disease process.  Services include classes in exercise and movement, meditation, guided imagery, a lending library, preparing for surgery, nutrition, support groups for partners, families and friends, gays and lesbians, peer support, spiritual support, appointment planning, smoking cessation, special seminars and events, referrals for individual and family counseling and psychotherapy, and breast prostheses, hats, turbans, wigs, make-up.

Saint Mary’s Medical Center
450 Stanyan Street
San Francisco, California  94117
415  750-5775
A resource center within Saint Mary’s Hospital.  Offers a breast cancer support community and a comprehensive lymphedema program.

Women's Bodies, Women's Wisdom

Christiane Northrup

Women’s Cancer Network

800  444-4441 
312  644-6610
www.wcn.org
Developed by the Gynecological Cancer Foundation.  Website dedicated to informing women about gynecologic cancer risk factors, diagnosis, treatment, and clinical trials.  Site features an interactive risk assessment survey and helps connect patients with gynecologic oncologists.
The Gynecologic Cancer Foundation released the "State of the State of Gynecologic Cancers --- First Annual Report to the Women of America," detailing the most recent advances in the detection and treatment of gynecologic cancers.  www.wcn.org/gcf/whatsnew/stateofthestate.htm
The report will be distributed each year in September, the Gynecologic Cancer Awareness Month.

Women’s Cancer Resource Center

• Information and Referral Helpine

Several hundred calls from women with cancer, their friends, family and loved ones come into the helpline each month. Volunteers who staff the helpline provide information on support groups, peer referrals, community resources, and treatment options, and refer to physicians as well as other health care providers. 

• Resource Library

Our comprehensive lending library includes 2,000 volumes, materials in Spanish, and Internet access. The library is one of the few that offers Spanish materials and information on a full spectrum of both mainstream and complementary therapies.

• Multicultural Outreach Program

We provide culturally approrpiate and linguistically accessible information, educational workshops and gatherings, support services and referrals, as well as outreach and continued follow-up to African Americans, Latinas, and other women of color living with a diagosis of cancer.

• Educational Forums, Advocacy, and Public Policy

Forums and workshops are offered on a range of topics. We offer free workshops on relevant issues for the cancer patient and those living with cancer. The Center partners with other organizations to make the link between cancer and environmental toxins and works to change policy to stop cancer where it starts.

• Calendar of Events
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• In-Home Support Services (Betts Program)

Our 1-to-1 Betts Program is the only program of its kind in the San Francisco Bay Area. We link volunteers with low-income women who need practical and emotional support. Volunteers assist with activities such as shopping and cleaning, as well as provide emotional support to those with limited resources and those who feel isolated and lonely in the face of their illness.

• Latina Services Program

This program focuses on families whose first language is Spanish. Staff and volunteers facilitate access to responsive and effective services and treatment. The program also includes community education programs in Spanish to ensure a greater understanding of a cancer diagnosis and care.

• Cultural and Healing Arts Programs

We provide a wide array or workshops and classes to help you get through treatments and assist you with wellness after your recovery, including Gentle Yoga, Writing for Wellness, Yarn Divas, Cooking Club, Nutrition, Creativity and special offerings.

• Sister to Sister

One of the key health issues facing the African American community is the overwehelming silence about cancer. Our clients agree that the silence in this community can be deadly. SIster to Sister encourages African women to "break the silence" about cancer by providing a forum for discussion, a place for support, and a means to disseminate resources and support information to build community. The program brings the powerful message to women of African descent that, "Sisters, no one needs to face this journey alone. Let's talk about cancer."

• Peer Support Groups

Our groups are run by trained facilitators with experience pertinent to the focus of the group. The groups are: Women with Cancer, Spanish-Speaking Women with Cancer, African American Women with Cancer, Complementary and Alternative Treatments, Adults with Blood-Related Cancers and Their Families and Friends; Spanish-Speaking Friends and Family of Women with Cancer, Women with Metastatic Cancer, Teen Support (for teens with a parent or caregiver with cancer), and a Lesbian Support Group.

• Peer Referral Network

Callers are linked to women with similar medical diagnoses, ethnic backgrounds, languages, sexual orientations, and/ or treatment choices. By connecting women with peers who have 'been there,' this service provides invaluable information and emotional support.

• East Bay Breast Cancer Emergency Fund

The EBBCEF provides financial assistance to low income women with breast cancer living in Alameda and Contra Costa Counties who are currently in treatment. The fund will provide women with access up to $500 per year to help with basic living needs. This fund is sponsored by Friends of Faith and To Celebrate Life Breast Cancer Foundation and several other donors.er and their families.

Women’s Health Resource Center

3698 California Street
San Francisco, California 94118
415  600-0500
Provides health information and education services. Gynecological Cancer Recovery Program.  Operates a boutique with products to cope with hair loss, breast surgery.

Women’s Health Services County of Marin Department of Health and Human Services

361 Third Street, Suite E
San Rafael, California 94901
415  507-4019
Full service OB-GYN and reproductive health clinic with day and evening clinics serving all ages.  Access to Family Pact and Cancer Detection services as well as the Breast and Cervical Cancer Treatment Program.