A melanoma diagnosis can often be a vulnerable time in a person’s life. IMPACT Melanoma recognizes the strength that group settings can have when people come together with others who have a melanoma diagnosis to share sensitive feelings and concerns about their illness. It can help to talk to others who have faced the same diagnosis. We offer support groups for patients and caregivers to address fears and uncertainty, increase opportunities to talk with others who share a melanoma diagnosis, enhance knowledge of melanoma and treatment options. In this group setting people have found they can identify coping strategies to address the emotional challenges that people may experience when diagnosed with cancer. The term caregiver is defined as a loved one who is directly affected by someone in their life who has a melanoma diagnosis.
Our support groups offer a safe and confidential space for both patients and caregivers. They are facilitated by experienced clinical social workers who have vast knowledge about how melanoma can impact patients and caregivers in various ways. Patients both in active treatment and out of treatment are welcome to attend our support groups. Some patients may feel the need to connect at the beginning of their melanoma journey while others feel the need for support once treatment is completed and they are no longer followed as closely by their medical team. Sometimes it is easier to talk about having melanoma with others who share a melanoma diagnosis, than it is with a partner or family/friends.
All of our support groups offered through IMPACT melanoma are free of charge and are available in multiple locations, including virtual groups for those who may not be able to attend an in person group or prefer to connect virtually.
If you have recently been diagnosed with melanoma, this video from Castle Biosciences about DecisionDx-Melanoma might be of interest to you.
Throughout his short but vibrant life, Bill Walls was everybody’s buddy — with a love for the outdoors, an infectious smile, and brilliant eyes, Bill’s kindness was remarkable. Despite a fierce struggle with melanoma, Bill kept his spirits high, his faith deep, and his buddies close. His trust in and compassion for others created a network of buddies that was there for Bill in his darkest days. Bill’s family, friends, co-workers, and the strangers he had touched scheduled appointments, tracked down medical records, researched clinical trials, and provided care for his 18-month old twins.
Such incredible support left Bill and his wife Amy feeling empowered to face each day with courage and confidence. This young and loving couple with so much support and so many resources often wondered how others without buddies would find the strength to fight. On a wintry night just weeks before he died, a normally passive Bill clearly and passionately expressed his wish for others affected by melanoma to always have a buddy.
HOW BILLY’S BUDDIES WORKS
IMPACT Melanoma trains volunteer buddies who are patients who have completed treatment and caregivers with loved ones who have completed treatment to provide peer support to patients newly diagnosed with melanoma or with recurrent disease. Most connections are by phone, while some use email as well. The program works with the patient to determine what feels most important in a connection. For some it can be the stage of a melanoma diagnosis, the age of the patient, similar treatment, young kids, etc. We do our best to match patients based on their requests provided that we have trained volunteer buddies who may have similar experiences. The amount of time a patient and buddy spend together via phone or email is up to the patient. Some connections are ongoing and relatively frequent, while others may be less depending on the patient’s needs.
*Please note that volunteer buddies are not clinicians and are not equipped to provide counseling support. If you are struggling with anxiety, depression or other mental health challenges, we recommend that you see a licensed mental health clinician in the community or in the medical center where you receive your medical care.
VOLUNTEERS ARE NEEDED
Interested applicants must be willing to commit to serving as a Volunteer Buddy for at least two hours per month for one year.
If you are a melanoma survivor yourself and wish to participate as a Volunteer Buddy, we ask that you apply at least 6 months after completing your own treatment.
Volunteer Buddies will receive comprehensive training in order to provide a variety of levels of support to the patient with whom they are matched. A Buddies primary role is to provide active listening and support through telephone contact to a patient currently in treatment or a caregiver engaged in a caretaking role of a patient.
Please pre-register prior to attending your first support group by contacting the group facilitator listed below.
For the safety of our patients and support group leaders, all groups are being held virtually until further notice due to the spread of COVID-19. Thank you for understanding
378 Plantation Street
Facilitator: Kathy Manfield, LICSW
Fourth Monday of the month, 7:00pm
Beverly Hospital – A Member of Lahey Health
85 Herrick Street – Garden Conference Room
Facilitator: Kelli Braga, LICSW
Second Thursday of the month, 6:00pm
Smilow Cancer Hospital at Yale-New Haven – CH 290
20 York Street
New Haven, CT 06510
Facilitator: Kylie Harrington, LMSW
Third Tuesday of the month, 5:00pm
VIRTUAL SUPPORT GROUP
Open to all patients regardless of where they seek treatment
Facilitator: Kelli Braga, LICSW
First Monday of the month at 12:00pm EST.
Please call for more information and to register
VIRTUAL SUPPORT GROUP
Facilitator: Kelli Braga, LICSW
First Thursday of the month, 5:30pm
Everyone’s emotional reaction to melanoma is different. As you struggle with issues of diagnosis and treatment, you may also face the social pressures that can even come from well-meaning friends who want more than anything for you to be OK. Psychologists who work with cancer patients have found a pattern of responses that is characteristic of a healthy adjustment. The three phases are initial response, distress, and adjustment. These three phases take you through the normal grieving process which is important to experience.
The initial response is usually shock and disbelief. This is followed by a period of distress that can be characterized by both anxiety and depression. As you learn about your options and begin to see a treatment plan form, there is a passage into the adjustment mode.
You may experience persistent sadness, in addition to:
Anxiety or depression
Decreased sexual interest
Difficulty concentrating, remembering, and making decisions
Insomnia or oversleeping
Weight or appetite loss
Restlessness and/or irritability
Normally, many of these symptoms would be considered unhealthy, but for a person with a new melanoma diagnosis they are a normal part of the process of dealing with this new reality. However, feelings of hopelessness and guilt are signs that should be considered indicators of more serious distress.
COPING WITH ANXIETY
A melanoma diagnosis is extremely stressful. Here are some tips to help you cope with anxiety:
Many people find that knowledge about their disease actually help to alleviate anxiety. Seek information through your physician, the patient education center at the hospital, your local library, and from melanoma online information and support tools.
Take control of the things that you have control over, eat a healthy diet, get some exercise.
Connect with loved ones.
Join one of our melanoma support groups and/or get a “Buddy” from Billy’s Buddies, our patient advocacy and support program.
Labels about melanoma can lead to guilt, which can be a huge burden for newly diagnosed patients. You may feel guilt about causing your melanoma, about having your family go through it, or about not being able to do what you did before, even if it is only for a short period of time. It’s not unusual to try to find an answer to why your melanoma developed, but focusing on the cause can lead to additional stress. It doesn’t do any good to look back. You have the capacity to stop blaming and judging yourself by realizing you cannot change the past and must focus on moving forward. Guilt can be a barrier to living your life fully, which is why experts recommend talking through these feelings with a helping professional or support group.
Studies show that nearly a quarter of all cancer patients will have symptoms of depression or an anxiety disorder during treatment. However, feelings of anger or sadness about your melanoma and the changes it brings are normal and may actually help you cope. Persistent feelings of helplessness or hopelessness and sense worthlessness are not typical and you should notify your doctor.
When diagnosing depression in cancer patients physicians place more emphasis on symptoms such as loss of pleasure, hope, and self-worth that last for more that two weeks instead of side effects that can also be caused by cancer and its treatments including fatigue and weight loss. In addition, some therapies are associated with mood disturbances.
According to the National Comprehensive Cancer Network guidelines, patients with a high level of anxiety or depression should consider talking with a mental health professional who can more adequately assess what type of treatment is warranted. Remember, depression is a treatable condition. It’s an illness just like melanoma, so don’t be afraid to get the help you need.
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Questions to Ask
Before choosing the best treatment for you, it’s important to understand the expected benefits, side effects, and risks of each option. Take written questions with you to each appointment and someone who is able to take notes for you. The following questions will get you started:
- What is the goal of treatment for my melanoma?
- What are the chances that the treatment will work?
- After treatment, will I be cured, in remission, or relieved of my symptoms?
- Are there other ways to achieve the same goal?
- How will I know if the treatment is working?
- If the treatment does not work, are there other options for me?
- What are the potential risks and side effects of the treatment I will receive? How do side effects of this treatment compare with the side effects of other treatments?
- How will I receive therapy, how often and for how long?
- Will my diet be restricted in any way? My activities? My work? Exercise? Sexual activity?
- Are there any clinical trials I could take part in?
- How much will my treatment cost? Will it be covered by my insurance or health plan?
- If the insurance company requests a second opinion or I would like one, whom do you suggest that I see?
(Adapted from the American Cancer Society )
Talking With Family About Melanoma
It won’t be an easy discussion. But now that you have been diagnosed with melanoma, your family members need to hear about protection and examining their skin.
Your diagnosis means that your parents, siblings and children are 2 – 8 times more at risk than the rest of the population.
It’s estimated that up to a million Americans have a melanoma risk directly related to family history. But at least half of these at-risk family members have never had a skin cancer examination by a dermatologist.
Because of your diagnosis, you can be a powerful messenger within your family. Studies consistently show that family education leads to earlier detection of many cancers – including melanoma.
If there are pre-teens and teenagers in your family, it is critical to emphasize the importance of avoiding UV exposure, including tanning beds, to reduce risk. Though pre-teens and teens are influenced by what their friends do, your teachings will have a positive impact.
ENCOURAGE YOUR FAMILY MEMBERS TO:
Get a Full Skin Exam Annually
Examine Their Skin Once a Month
Always Stay Safe in the Sun
ARE YOU AT RISK FOR MELANOMA?
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