Guide for. Gynecologic. Cancer. Survivors. foundationforwomenscancer.org

Transcription

1 Guide for Gynecologic Cancer Survivors foundationforwomenscancer.org

2 I'm a survivor a living example of what people can go through and survive. ~ ELIZABETH TAYLOR The Foundation for Women s Cancer is committed to support you as you continue your survivorship journey. In addition to offering free, daylong courses and telephone workshops for women diagnosed with a gynecologic cancer throughout the country, we are pleased to provide information about specific aspects of survivorship including survivorship care plans, the importance of distress screening, and role of supportive or palliative care in your continued survivorship. WHAT S INSIDE SURVIVORSHIP CARE PLANS DISTRESS SCREENING SUPPORTIVE OR PALLIATIVE CARE TALKING WITH YOUR TREATMENT TEAM RESOURCES APPENDIX A: SURVIVORSHIP CARE PLANS Cervical Cancer Treatment Summary and Survivorship Care Plan Ovarian Cancer Treatment Summary and Survivorship Care Plan Endometrial Cancer Treatment Summary and Survivorship Care Plan Vulvar Cancer Treatment Summary and Survivorship Care Plan APPENDIX B: NCCN DISTRESS THERMOMETER

3 SURVIVORSHIP CARE PLANS Currently there are about 12 million Americans who are considered cancer survivors. In 2006 the Institute of Medicine (IOM) issued a report that stated that the U.S. healthcare system is failing these survivors because there is no organized and comprehensive system of care for those who have completed active treatment. In response, the IOM recommends that every cancer patient receive an individualized survivorship care plan that includes guidelines for monitoring and maintaining their health. Survivorship care plans are intended to serve as a roadmap for you as you regain control of your life after having many aspects of it managed by your healthcare team when you were undergoing active treatment. After you have been discharged from cancer treatment, including recurrences, you should request and be given a record of all of the care you received, information about your particular cancer, as well as a written follow-up care plan. The Society of Gynecologic Oncology (SGO) formed the Foundation for Women s Cancer in 1991 and has developed specific survivorship care plan templates for use by you and your healthcare teams to address the concerns outlined in the IOM report. Launched by the SGO in 2012, these individualized care plans are for cervical, ovarian, uterine and vulvar cancer survivors. They can be found in a printable format in Appendix A. The Foundation for Women s Cancer urges you take advantage of these tools by requesting that your cancer doctor and team work with you to complete the appropriate care plan. You may have made notes during your active treatment that can assist in this process. You will note that SGO encourages you to keep your treatment plan in a readily accessible place in case you need to seek urgent care from a provider other than your cancer doctor. DISTRESS SCREENING Whether you are in active treatment or have been discharged, it is common for individuals diagnosed with cancer to experience some level of distress. How much distress you feel depends on many factors including your own psychological makeup. According to the National Comprehensive Cancer Network (NCCN), distress is an unpleasant emotional state that can affect how you feel, think and act. Everyone with cancer experiences some level of distress that may include feelings of unease, worry, sadness, anger, guilt and helplessness. Distress can range from minimal to severe, and it is important for your treatment team to be aware of how you feel, especially if it is severe. NCCN has developed a distress thermometer that you may find helpful in communicating with your treatment team in a way that can assist them in helping you. This aspect of your care also is addressed in the SGO survivorship care plans. NCCN DISTRESS THERMOMETER Extreme distress No distress The Foundation for Women s Cancer acknowledges and thanks the NCCN for allowing us to include its tool in this brochure. A copy of the thermometer also is found in Appendix B in a printable format GUIDE FOR GYNECOLOGIC CANCER SURVIVORS 1

4 SUPPORTIVE OR PALLIATIVE CARE Supportive or palliative care refers to care given to relieve the pain you experience as a result of your gynecologic cancer diagnosis. It can be given to make you feel more comfortable whether you are in active treatment or have been discharged. Some women think that palliative care or supportive care means care at the end of life. While this care certainly can be needed at that time, it is an important resource regardless of where you are in your survivorship journey. Now there is a specific board certification for gynecologic oncologists who wish to specialize in supportive or palliative care. The goal of supportive or palliative care is to help you experience the best quality of life regardless of where you are in your gynecologic cancer journey. It is directed toward relieving symptoms like pain, fatigue, nausea or shortness of breath, to relieve these symptoms and side effects. In some settings, there is a special team dedicated to addressing these concerns. The emotional impact of a gynecologic cancer diagnosis also is an aspect of supportive or palliative care. As mentioned above, the distress thermometer can be a useful tool in helping you and your healthcare team address this aspect of your overall quality of life. TALKING WITH YOUR TREATMENT TEAM Regardless of where you are on the survivorship continuum, communication with your treatment team is an important component of your quality of life. Sometimes it is hard to express your feelings, fears and concerns even to the most willing of listeners. Here are a few tips that may help you: Think about what you hope to gain from the conversation and write them down as goals Next think about how to ask the questions or express your concerns that will provide the information necessary for your healthcare team to be of most help; write them down At the end of the conversation, summarize with the team what you have learned and list the actions steps that have been agreed upon As always, it is helpful to have a family member or friend accompany you as an extra pairw of ears The Foundation for Women s Cancer hopes this information has been helpful to you. We would appreciate your feedback on its contents as we continually strive to provide information and inspiration to women living with a gynecologic cancer. Please contact us for this purpose or to inquire about how you can support our work at info@foundationforwomenscancer.org. You never know how strong you are until being strong is the only choice you have. ~ CAYLA MILLS 2 GUIDE FOR GYNECOLOGIC CANCER SURVIVORS

5 S U R V IV O RS H I P C A RE P LA N S American Cancer Society cancer.org/survivorshipcareplans Institute of Medicine iom.edu/survivorshipcareplanfactsheet Livestrong livestrongcareplan.org Society of Gynecologic Oncology D IS T RE S S S C RE E N I N G American Cancer Society Cancer Support Community National Comprehensive Cancer Network S U P P O R TI VE OR P A LLI A T I VE C A RE American Cancer Society cancer.org/palliativecare Center for Advanced Palliative Care getpalliativecare.org Foundation for Women s Cancer foundationforwomenscancer.org/supportive-care/ GUIDE FOR GYNECOLOGIC CANCER SURVIVORS 3

6 Cancer may have started the fight, but I will finish it. ~ GOTCANCER.ORG HELP THE FOUNDATION FOR WOMEN S CANCER SPREAD THE WORD Please consider a donation to the Foundation for Women s Cancer to help us reach more women with these important messages. You can donate online at foundationforwomenscancer.org, contact Headquarters at or info@foundationforwomenscancer.org. The Society of Gynecologic Oncology s (SGO) Foundation for Women s Cancer is dedicated to increasing public awareness of gynecologic cancer risk awareness, prevention, early detection and optimal treatment. Founded by SGO in 1991, the Foundation for Women s Cancer is a nonprofit organization that also provides funding for gynecologic cancer research and training, as well as educational programs and resources. 4 GUIDE FOR GYNECOLOGIC CANCER SURVIVORS

7 APPENDIX A SURVIVORSHIP CARE PLANS Cervical Cancer Treatment Summary and Survivorship Care Plan Ovarian Cancer Treatment Summary and Survivorship Care Plan Endometrial Cancer Treatment Summary and Survivorship Care Plan Vulvar Cancer Treatment Summary and Survivorship Care Plan GUIDE FOR GYNECOLOGIC CANCER SURVIVORS 5

8 Society of Gynecologic Oncology Survivorship Summary Cervical Cancer Treatment Summary and Survivorship Care Plan For Patient Name: DOB: / / MR Number: Cancer Treatment Team: Gynecologic Oncologist: Radiation Oncologist: Medical Oncologist: Navigator / Social Worker: Post-Treatment Care Team: Primary Care Provider: Cancer Surveillance Provider: Medical History: Comorbid conditions: Personal history of cancer: Family history of cancer: Cervical Cancer Diagnosis and Treatment Summary: Date of Diagnosis: / / Stage (include comment on involved areas, and how documented, i.e. pathology/imaging): Histology: Surgery: no yes on / / (specify procedure(s) and significant findings): Radiation: no yes (specify): External: from / / to / / ; Total dose: cgy; Field: Internal: from / / to / / ; Total dose: cgy; Technique: Chemotherapy: no yes (specify drugs, doses, number of cycles): Chemotherapy start date: / / completion date: / / Treatment on Clinical Trial: no yes (specify): Date of Completion of Primary Therapy (i.e. surgery +/- adjuvant chemo, RT or primary chemo RT): / / Disease Status at Completion of Primary Therapy: Complete clinical response / no evidence of disease Other: Risk of Recurrence: Low High Complications during Therapy / Modifications to Treatment Plan: DISCLAIMER: All changes made to this document are the responsibility of the physician or institution, not the administrator, contributor, editor or author of the original document. By utilizing this document, you agree that the content is your own, and to hold SGO and all representatives harmless from any and all repercussions, damages or liability. Summary of treatment and recommendations for surveillance do not override recommendations of your personal physician(s) Society of Gynecologic Oncology. All rights reserved.

9 Persistent Treatment-Associated Adverse Effects at Completion of Therapy: It is important to recognize that not every woman experiences the following adverse events after treatment. You may not have any of these issues, a few or many adverse effects. Experiences are highly variable. Please discuss any adverse effects of cancer treatment with your cancer care team. After SURGICAL and/or RADIATION THERAPY Menopausal symptoms: Hot flashes, night sweats and vaginal dryness may occur. See your health care professionals about non-medication recommendations and medication-based treatment. Leg swelling: Minimal to pronounced lower leg swelling can occur. Symptom control with compression hose, lymphedema massage or specialized physical therapy can be ordered. Sexual intimacy issues: Vaginal dryness and scarring at the top of the vagina causing discomfort can occur. Use of a lubricant and dilator can help prevent or improve vaginal symptoms. Vaginal dryness & vaginal tightening: Use of a lubricant & dilator can help prevent or improve vaginal symptoms. After CHEMOTHERAPY Numbness and tingling of extremities: Medications and acupuncture are treatment options. After Cancer Treatment in General: It is not uncommon for cancer to impact other areas of your life such as relationships, work and mental health. If you develop financial concerns, resources are sometimes available to assist in these areas. Depression and anxiety can present either during or after cancer diagnosis and treatment. It is important to discuss with your physician any of these concerns so these resources can be made available to you. Social Worker: Local Cancer Support Group and Contact Information: Financial Counselor and Contact Information: Dietician Contact Information and Information Provided:

10 Self Care Plan: What You Can Do to Stay Healthy after Treatment for Cervical Cancer Cancer treatments may increase your chance of developing other health problems years after you have completed treatment. The purpose of this self care plan is to inform you about what steps you can take to maintain good health after cancer treatment, including coping with side effects of treatment, reducing the risk of cancer returning, and watching for signs of cancer returning or of a new cancer. Keep in mind that every person treated for cancer is different and that these recommendations are not intended to be a substitute for the advice of a doctor or other health care professional. Please use these recommendations to talk with your doctor or primary care provider about an appropriate follow-up care plan for you. Recommendation for Follow-Up for Cervical Cancer: Have a medical history and physical exam that is focused on detecting signs of cancer recurrence or of new cancers, including a pelvic exam. The frequency of exams depends on the stage of cancer and other risk factors For instance, if you had a higher stage of cancer, you may be seen more often. See the table below for general guidelines. If you had cervical cancer once, there is a chance that it may come back or spread to other parts of your body. The risk is highest in the first two years after treatment, but continues for at least five years. It is recommended that you have a careful history and physical including pelvic exam (check-up) every 12 months for the rest of your life. After cancer treatment, if you feel that something is not right with your body, see your primary care doctor or provider. Symptoms to report to your doctor include vaginal bleeding, rectal bleeding, blood in urine, persistent pain, leg swelling, new masses (i.e., bumps in your neck or groin), persistent cough, persistent nausea and vomiting, and any other concerns. If what you are feeling is urgent, and you cannot get an appointment with your doctor, go to an Urgent Care or Medical Walk-In Clinic. Tell the doctor you had cancer. Show them a copy of your cervical cancer treatment summary. Table reproduced with permission of the American Journal of Obstetrics and Gynecology.

11 Society of Gynecologic Oncology Survivorship Summary Ovarian Cancer Treatment Summary and Survivorship Care Plan For Patient Name: DOB: / / MR Number: Cancer Treatment Team: Gynecologic Oncologist: Radiation Oncologist: Medical Oncologist: Navigator / Social Worker: Post-Treatment Care Team: Primary Care Provider: Cancer Surveillance Provider: Cancer History (any): Personal: Family: Genetic referral: no yes (results) Date: Ovarian Cancer Diagnosis and Treatment Summary: Date of Diagnosis: / / Stage: Histology: Grade: CA-125 at diagnosis: Initial Surgery: no yes on / / (specify, procedure(s), significant pathology): Debulking: Optimal Suboptimal Residual disease size: Location: Chemotherapy: no yes (specify drugs, route, doses, number of cycles): Chemotherapy start date: / / completion date: / / Clinical trial participation: yes no Details of Clinical Trial: Date of Completion of Primary Therapy (i.e., surgery and chemotherapy): / / Toxicity of treatment: Disease Status at Completion of Primary Therapy: Complete Clinical Response / No Evidence of Disease Other: DISCLAIMER: All changes made to this document are the responsibility of the physician or institution, not the administrator, contributor, editor or author of the original document. By utilizing this document, you agree that the content is your own, and to hold SGO and all representatives harmless from any and all repercussions, damages or liability. Summary of treatment and recommendations for surveillance do not override recommendations of your personal physician(s) Society of Gynecologic Oncology. All rights reserved.

12 Persistent Treatment-Associated Adverse Effects at Completion of Therapy It is important to recognize that not every woman experiences the following adverse events after treatment. You may not have any of these issues, a few or many adverse effects. Experiences are highly variable. Please discuss any adverse effects of cancer treatment with your cancer care team. After SURGICAL THERAPY Menopausal symptoms: Hot flashes, night sweats and vaginal dryness may occur. See your health care professionals about non-medication recommendations and medication-based treatment. Leg swelling: Minimal to pronounced lower leg swelling can occur. Symptom control with compression hose, lymphedema massage or specialized physical therapy can be ordered. Sexual intimacy issues: Vaginal dryness and scarring at the top of the vagina causing discomfort can occur. Use of a lubricant and dilator can help prevent or improve vaginal symptoms. After CHEMOTHERAPY Numbness and tingling of extremities: Symptoms may worsen in the months after surgery and then may improve. Medications and acupuncture are treatment options. After Cancer Treatment in General: It is not uncommon for cancer to impact other areas of your life such as relationships, work and mental health. If you develop financial concerns, resources are sometimes available to assist in these areas. Depression and anxiety can present either during or after cancer diagnosis and treatment. It is important to discuss with your physician any of these concerns so these resources can be made available to you. Social Worker: Local Ovarian Cancer Support Group and Contact Information: Financial Counselor and Contact Information: Dietician Contact Information and Information Provided:

13 Society of Gynecologic Oncology Recommendations Self Care Plan: What You Can Do to Stay Healthy after Treatment for Ovarian Cancer Cancer treatments may increase your chance of developing other health problems years after you have completed treatment. The purpose of this self care plan is to inform you about what steps you can take to maintain good health after cancer treatment, including coping with side effects of treatment, reducing the risk of cancer returning, and watching for signs of cancer returning or of a new cancer. Keep in mind that every person treated for cancer is different and that these recommendations are not intended to be a substitute for the advice of a doctor or other health care professional. Please use these recommendations to talk with your doctor and health care team about an appropriate follow-up care plan for you. Recommendation for Follow-Up for Ovarian Cancer Have a medical history and physical exam that is focused on detecting signs of cancer recurrence or of new cancers, including a detailed pelvic exam (speculum, pelvic and rectovaginal; however, a routine Pap smear is not recommended for routine cancer follow up). Frequency depends on stage of cancer and other risk factors. For instance, if you had a higher stage of cancer, you may be seen more often. See the table below for general guidelines. If you had ovarian cancer once, there is a chance that it may come back or spread to other parts of your body. The risk is highest in the first two to three years after treatment, but continues for at least five years. After five years, it is recommended that you have a careful history and physical including pelvic exam (check-up) every 12 months for the rest of your life. After cancer treatment, if you feel that something is not right with your body, see your regular doctor, physician assistant or nurse practitioner. Symptoms to report to your health care team include abdominal distension, feeling full easily, new and persistent nausea and vomiting, bloating, vaginal bleeding, rectal bleeding, weight loss without effort, new and persistent pain, new and persistent fatigue, new masses (i.e., bumps in your neck or groin), new and persistent cough and any other concerns. If what you are feeling is urgent, and you cannot get an appointment with your regular health care team, go to an Urgent Care or Medical Walk-In Clinic. Tell the medical provider you had cancer. Show them a copy of your ovarian cancer treatment summary. Table reproduced with permission of the American Journal of Obstetrics and Gynecology.

14 Society of Gynecologic Oncology Survivorship Summary Endometrial Cancer Treatment Summary and Survivorship Care Plan For Patient Name: DOB: / / MR Number: Cancer Treatment Team: Gynecologic Oncologist: Radiation Oncologist: Medical Oncologist: Navigator / Social Worker: Post-Treatment Care Team: Primary Care Provider: Cancer Surveillance Provider: Cancer History (any): Personal: Family: Genetic referral: no yes (results) Date: Uterine Cancer Diagnosis and Treatment Summary: Date of Diagnosis: / / Stage: % myometrial invasion Histology: Grade Surgery: no yes on / / (specify, procedure(s), significant pathology): Radiation: no yes (specify): Teletherapy: from / / to / / ; Total dose: cgy; Field: Brachytherapy: from / / to / / ; Total dose: cgy; Technique: Chemotherapy: no yes (specify drugs, doses, number of cycles): Chemotherapy start date: / / completion date: / / Date of Completion of Primary Therapy (i.e. surgery +/- adjuvant chemo, RT or primary chemo RT): / / Hormonal Therapy: no yes (specify drugs and doses): Hormonal Therapy Start Date: / / Completion Date: / / Disease Status at Completion of Primary Therapy: Complete Clinical Response / No Evidence of Disease Other: Risk of Recurrence: Low High DISCLAIMER: All changes made to this document are the responsibility of the physician or institution, not the administrator, contributor, editor or author of the original document. By utilizing this document, you agree that the content is your own, and to hold SGO and all representatives harmless from any and all repercussions, damages or liability. Summary of treatment and recommendations for surveillance do not override recommendations of your personal physician(s) Society of Gynecologic Oncology. All rights reserved.

15 Persistent Treatment-Associated Adverse Effects at Completion of Therapy: It is important to recognize that not every woman experiences the following adverse events after treatment. You may not have any of these issues, a few or many adverse effects. Experiences are highly variable. Please discuss any adverse effects of cancer treatment with your cancer care team. After SURGICAL THERAPY Menopausal symptoms: Hot flashes, night sweats and vaginal dryness may occur. See your health care professionals about non-medication recommendations and medication-based treatment. Leg swelling: Minimal to pronounced lower leg swelling can occur. Symptom control with compression hose, lymphedema massage or specialized physical therapy can be ordered. Sexual intimacy issues: Vaginal dryness and scarring at the top of the vagina causing discomfort can occur. Use of a lubricant and dilator can help prevent or improve vaginal symptoms. After RADIATION THERAPY Vaginal dryness and vaginal tightening: Use of a lubricant and dilator can help prevent or improve vaginal symptoms. After CHEMOTHERAPY Numbness and tingling of extremities: Medications & acupuncture are treatment options. After/during HORMONAL THERAPY Increased appetite, resulting in weight gain: Close monitoring of diet and exercise is encouraged. Fluid retention: Compression hose or medication can be used to decrease swelling. After Cancer Treatment in General: It is not uncommon for cancer to impact other areas of your life such as relationships, work and mental health. If you develop financial concerns, resources are sometimes available to assist in these areas. Depression and anxiety can present either during or after cancer diagnosis and treatment. It is important to discuss with your physician any of these concerns so these resources can be made available to you. Social Worker: Local Cancer Support Group and Contact Information: Financial Counselor and Contact Information: Dietician Contact Information and Information Provided: DISCLAIMER: All changes made to this document are the responsibility of the physician or institution, not the administrator, contributor, editor or author of the original document. By utilizing this document, you agree that the content is your own, and to hold SGO and all representatives harmless from any and all repercussions, damages or liability. Summary of treatment and recommendations for surveillance do not override recommendations of your personal physician(s) Society of Gynecologic Oncology. All rights reserved.

16 Society of Gynecologic Oncology Recommendations Self Care Plan: What You Can Do to Stay Healthy after Treatment for Uterine Cancer Cancer treatments may increase your chance of developing other health problems years after you have completed treatment. The purpose of this self care plan is to inform you about what steps you can take to maintain good health after cancer treatment, including coping with side effects of treatment, reducing the risk of cancer returning, and watching for signs of cancer returning or of a new cancer. Keep in mind that every person treated for cancer is different and that these recommendations are not intended to be a substitute for the advice of a doctor or other healthcare professional. Please use these recommendations to talk with your doctor and healthcare team about an appropriate follow up care plan for you. Recommendation for Follow-Up for Uterine Cancer: Have a medical history and physical exam that is focused on detecting signs of cancer recurrence or of new cancers, including a detailed pelvic exam (speculum, pelvic and rectovaginal; however, a routine Pap smear is not recommended for routine cancer follow up). Frequency depends on stage of cancer and other risk factors. For instance, if you had a higher stage of cancer, you may be seen more often. See the table below for general guidelines. If you had uterine cancer once, there is a chance that it may come back or spread to other parts of your body. The risk is highest in the first two to three years after treatment, but continues for at least five years. After five years, it is recommended that you have a careful history and physical including pelvic exam (check-up) every 12 months for the rest of your life. After cancer treatment, if you feel that something is not right with your body, see your regular doctor, physician assistant or nurse practitioner. Symptoms to report to your health care team include vaginal bleeding, rectal bleeding, weight loss without effort, new and persistent pain, new and persistent fatigue, new leg swelling, new masses (i.e., bumps in your neck or groin), new and persistent cough, new and persistent nausea and vomiting and any other concerns. If what you are feeling is urgent, and you cannot get an appointment with your regular health care team, go to an Urgent Care or Medical Walk-In Clinic. Tell the medical provider you had cancer. Show them a copy of your uterine cancer treatment summary. Table reproduced with permission of the American Journal of Obstetrics and Gynecology. DISCLAIMER: All changes made to this document are the responsibility of the physician or institution, not the administrator, contributor, editor or author of the original document. By utilizing this document, you agree that the content is your own, and to hold SGO and all representatives harmless from any and all repercussions, damages or liability. Summary of treatment and recommendations for surveillance do not override recommendations of your personal physician(s) Society of Gynecologic Oncology. All rights reserved.

17 Society of Gynecologic Oncology Survivorship Summary Vulvar Cancer Treatment Summary and Survivorship Care Plan For Patient Name: DOB: / / MR Number: Cancer Treatment Team: Gynecologic Oncologist: Radiation Oncologist: Medical Oncologist: Navigator / Social Worker: Post-Treatment Care Team: Primary Care Provider: Cancer Surveillance Provider: Medical History: Comorbid conditions: Personal history of cancer: Family history of cancer: Vulvar Cancer Diagnosis and Treatment Summary: Date of Diagnosis: / / Stage (include comment on involved areas, and how documented, i.e. pathology/imaging): Histology: Surgery: no yes on / / (specify procedure(s) and significant findings): Radiation: no yes (specify): Preoperative Postoperative from / / to / / ; Total dose: cgy Location: Left Groin Right Groin Bilateral Groins Vulva Pelvis Chemotherapy: no yes (specify drugs, doses, number of cycles): Chemotherapy start date: / / completion date: / / Treatment on Clinical Trial: no yes (specify): Date of Completion of Primary Therapy (i.e. surgery +/- adjuvant chemo, RT or primary chemo RT): / / Disease Status at Completion of Primary Therapy: Complete Clinical Response / No Evidence of Disease Other: Risk of Recurrence: Low High Complications during Therapy / Modifications to Treatment Plan: DISCLAIMER: All changes made to this document are the responsibility of the physician or institution, not the administrator, contributor, editor or author of the original document. By utilizing this document, you agree that the content is your own, and to hold SGO and all representatives harmless from any and all repercussions, damages or liability. Summary of treatment and recommendations for surveillance do not override recommendations of your personal physician(s) Society of Gynecologic Oncology. All rights reserved.

18 Persistent Treatment-Associated Adverse Effects at Completion of Therapy: It is important to recognize that not every woman experiences the following adverse events after treatment. You may not have any of these issues, a few or many adverse effects. Experiences are highly variable. Please discuss any adverse effects of cancer treatment with your cancer care team. After SURGICAL and/or RADIATION THERAPY Menopausal symptoms: Hot flashes, night sweats and vaginal dryness may occur. See your health care professionals about non-medication recommendations and medication-based treatment. Leg swelling: Minimal to pronounced lower leg swelling can occur. Symptom control with compression hose, lymphedema massage or specialized physical therapy can be ordered. Sexual intimacy issues: Vaginal dryness and scarring at the top of the vagina causing discomfort can occur. Use of a lubricant and dilator can help prevent or improve vaginal symptoms. Vaginal dryness & vaginal tightening: Use of a lubricant and dilator can help prevent or improve vaginal symptoms. After CHEMOTHERAPY Numbness and tingling of extremities: Medications and acupuncture are treatment options. After Cancer Treatment in General: It is not uncommon for cancer to impact other areas of your life such as relationships, work and mental health. If you develop financial concerns, resources are sometimes available to assist in these areas. Depression and anxiety can present either during or after cancer diagnosis and treatment. It is important to discuss with your physician any of these concerns so these resources can be made available to you. Social Worker: Local Cancer Support Group and Contact Information: Financial Counselor and Contact Information: Dietician Contact Information and Information Provided:

19 Self Care Plan: What You Can Do to Stay Healthy after Treatment for Vulvar Cancer Cancer treatments may increase your chance of developing other health problems years after you have completed treatment. The purpose of this self care plan is to inform you about what steps you can take to maintain good health after cancer treatment, including coping with side effects of treatment, reducing the risk of cancer returning, and watching for signs of cancer returning or of a new cancer. Keep in mind that every person treated for cancer is different and that these recommendations are not intended to be a substitute for the advice of a doctor or other health professional. Please use these recommendations to talk with your doctor or primary care provider about an appropriate follow-up care plan for you. Recommendation for Follow-Up for Vulvar Cancer: Have a medical history and physical exam that is focused on detecting signs of cancer recurrence or of new cancers, including a pelvic exam. The frequency of exams depends on the stage of cancer and other risk factors. For instance, if you had a higher stage of cancer, you may be seen more often. See the table below for general guidelines. If you had vulvar cancer once, there is a chance that it may come back or spread to other parts of your body. The risk is highest in the first two years after treatment, but continues for at least five years. It is recommended that you have a careful history and physical including pelvic exam (check-up) every 12 months for the rest of your life. After cancer treatment, if you feel that something is not right with your body, see your primary care doctor or provider. Symptoms to report to your doctor include vaginal bleeding, rectal bleeding, blood in urine, persistent pain, leg swelling, new masses (i.e., bumps in your neck or groin) persistent cough, persistent nausea and vomiting, and any other concerns. If what you are feeling is urgent, and you cannot get an appointment with your doctor, go to an Urgent Care or Medical Walk-In Clinic. Tell the doctor you had cancer. Show them a copy of your vulvar cancer treatment summary. Table reproduced with permission of the American Journal of Obstetrics and Gynecology.

20 APPENDIX B nccn distress thermometer 6 GUIDE FOR GYNECOLOGIC CANCER SURVIVORS

21 NCCN Distress Thermometer for Patients Help for distress Distress is an unpleasant emotional state that may affect how you feel, think, and act. It can include feelings of unease, sadness, worry, anger, helplessness, guilt, and so forth. Everyone with cancer has some distress at some point of time. It is normal to feel sad, fearful, and helpless. Feeling distressed may be a minor problem or it may be more serious. You may be so distressed that you can t do the things you used to do. Serious or not, it is important that your treatment team knows how you feel. The Distress Thermometer is a tool that you can use to talk to your doctors about your distress. It has a scale on which you circle your level of distress. It also asks about the parts of life in which you are having problems. The Distress Thermometer has been tested in many studies and found to work well. Please complete the Distress Thermometer and share it with your treatment team at your next visit. The Distress Thermometer helps your treatment team know if you need supportive services. You may be referred to supportive services at your cancer center or in your community. Supportive services can include help from support groups, chaplains, social workers, counselors, and many other experts. Supportive services can also be found through the support services at right. Support Services National Cancer Institute s Cancer Information Service Telephone CANCER Website Cancer Support Community Telephone Website MainMenu/Cancer-Support U.S. Health Resources and Services Administration Website Search_HCC.aspx U.S. Substance Abuse and Mental Health Services Administration Website The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines ) are a statement of evidence and consensus of the authors regarding their views of currently accepted approaches to treatment. Any clinician seeking to apply or consult the NCCN Guidelines is expected to use independent medical judgment in the context of individual clinical circumstances to determine any patient s care or treatment. The National Comprehensive Cancer Network (NCCN ) makes no representations or warranties of any kind regarding their content, use, or application, and disclaims any responsibility for their application or use in any way. The NCCN Guidelines are copyrighted by National Comprehensive Cancer Network. All rights reserved. The NCCN Guidelines and the illustrations herein may not be reproduced in any form without the express written permission of NCCN

22 NCCN Distress Thermometer for Patients SCREENING TOOLS FOR MEASURING DISTRESS Instructions: First please circle the number (0-10) that best describes how much distress you have been experiencing in the past week including today. Extreme distress No distress Second, please indicate if any of the following has been a problem for you in the past week including today. Be sure to check YES or NO for each. YES NO Practical Problems q q Child care q q Housing q q Insurance/financial q q Transportation q q Work/school q q Treatment decisions Family Problems q q Dealing with children q q Dealing with partner q q Ability to have children q q Family health issues Emotional Problems q q Depression q q Fears q q Nervousness q q Sadness q q Worry q q Loss of interest in usual activities q q Spiritual/religious concerns YES NO Physical Problems q q Appearance q q Bathing/dressing q q Breathing q q Changes in urination q q Constipation q q Diarrhea q q Eating q q Fatigue q q Feeling Swollen q q Fevers q q Getting around q q Indigestion q q Memory/concentration q q Mouth sores q q Nausea q q Nose dry/congested q q Pain q q Sexual q q Skin dry/itchy q q Sleep q q Substance abuse q q Tingling in hands/feet Other Problems: The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines ) are a statement of evidence and consensus of the authors regarding their views of currently accepted approaches to treatment. Any clinician seeking to apply or consult the NCCN Guidelines is expected to use independent medical judgment in the context of individual clinical circumstances to determine any patient s care or treatment. The National Comprehensive Cancer Network (NCCN ) makes no representations or warranties of any kind regarding their content, use, or application, and disclaims any responsibility for their application or use in any way. The NCCN Guidelines are copyrighted by National Comprehensive Cancer Network. All rights reserved. The NCCN Guidelines and the illustrations herein may not be reproduced in any form without the express written permission of NCCN

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24 Foundation for Women s Cancer 230 W. Monroe St., Suite 2528 Chicago, IL Phone: Fax: info@foundationforwomenscancer.org foundationforwomenscancer.org The Foundation for Women s Cancer gratefully acknowledges the Coleman Foundation for the printing of this brochure. Content developed by the Foundation for Women s Cancer Foundation for Women s Cancer. All rights reserved.