As skin cancers go, melanoma is the least common and the most concerning. It can spread from the skin to organs and bones and is most often triggered by UV exposure, especially in those who have a genetic predisposition to this type of cancer.
Everyone experiences a cancer diagnosis differently. For some, a melanoma diagnosis can feel frightening or overwhelming. Although the survival rates for melanoma are good when it is found early, and they are improving even for later stage disease, it is a diagnosis that should be taken seriously.
When it comes to considering treatment for melanoma, it’s natural to have questions and concerns. Sometimes it helps to hear from those who’ve been through it. So we reached out to the Health Stories Project community and asked them to share their personal experiences with melanoma treatment. As you read, please remember that these are the opinions of the people featured. It is always best to talk to your health care provider before making decisions about treatment.
Here’s what our community members chose to share:
1. Information on melanoma treatment is available.
“The bottom line is, learn all you can,” says Jennifer. “I was fortunate enough to attend a melanoma symposium within a few days of my diagnosis. I learned from experts and survivors about how melanoma is diagnosed, the causes, the survival rates, and the latest research.”
2. Remember, not all sources are reliable.
When it came to online research, Kathleen was cautious. “Know all your options but don’t do too much investigation on the Internet,” she says. “There’s so much information out there and some of it is untrustworthy. That can be disastrous for your mental health.”
3. It’s ok to ask questions.
“Talk to your doctor and ask many, many questions,” says Sally.
“If they aren’t willing to give you the time to answer your questions, find another doctor.”
4. You may have options.
“You should know about all the options available to you and not feel pressured to make a choice in minutes,” says Jacquelyn.
“I felt safer going to a surgical oncologist rather than allowing my dermatologist to handle my treatment,” says Tara. “I think that was a wise move for me as I prefer a more aggressive approach.”
5. If time allows, some choose to ask for a second opinion.
“You can’t put a price on peace of mind,” says Caitlyn, who was pregnant when she was diagnosed. “Although one dermatologist told me my melanoma could be treated with wide-excision surgery, I elected to meet with an oncologist for a different perspective.”
“Two opinions are better than one,” says Sabrina.
6. You can bring supportive family and friends with you to appointments.
“Make sure you take someone to your doctor’s appointments,” says Hope. “You’re going to get a lot of information and you may be very overwhelmed trying to retain it all.”
“Take someone with you,” agrees Pam. “Have them write down everything that’s discussed.”
7. In some areas, there are melanoma specialists and treatment centers.
“Not all cancer centers are melanoma centers,” says Cheryl. “Additionally, remember that not all melanoma centers are the same either. They have different trials and treatments available”
8. Treatment can cause side effects.
“Melanoma usually means a very long treatment course, unlike most other cancers, so knowing what and how much you can handle is good,” says Brendan.
9. Your healthcare providers will help develop a treatment plan.
“Know what the treatment consists of and who will monitor your treatment,” says John. “I chose an oncologist who had a convincing game plan. If this doesn’t work we will try this and then that. He was always thinking several steps down the road.”
“Your team will help guide you,” says Lisa. “Everyone from the doctor who does your node biopsy to the dermatologist that knows every square inch of your body is fighting for you. Your treatment plan may be scary, but your team will get your through it.”
10. There are people who have been in your shoes and want to help.
“Speak to someone that has been down the same road,” says Jacquelyn. “There are wonderful nonprofit organizations that provide trained volunteers who want to support you in this journey.”
11. You may need more help.
“You will need a support system,” says Debbi. “Just one or two people to get you through the weak and sick times.”
12. Healing isn’t just about treatment.
“I would get to a quiet place and just eliminate all the noise and advice from close relatives that mean well but add to the confusion,” says Lisa. “And don’t forget about laughing.”
“This is a mind-body-spirit healing process,” says Jacquelyn. “You can do this. You are capable of amazing things.”
Is there a support group that help families that lost a loved one from Mestasis Melanoma Skin Cancer?? We lost my beautiful Sister 6/6/18. To this nasty aggressive thing. And i struggle hard with this.
there is a fb group called pale and proud which brings together people who are going through melanima treatment and I think some people have mentioned losing people to melanoma in it, immunotherapy and other treatments are discussed.