Unexpected diagnosis

[HSsweetheart]

We just received my husband's diagnosis after his lobectomy two days ago: stage 4 melanoma. We were expecting a stage 2 lung. Isn't that crazy? Hoping for a different type of cancer? The latter seemed treatable. Melanoma sounds so much worse. This will take awhile to sink in. I need advice on how to discuss with his sons; 16 & 18.

[missyrand Ambassador]

HSsweetheart,

I'm sorry you are facing melanoma head on today. Cancer sucks.

You are also in the very early days of learning reliable information, drafting questions to ask of your providers, and potentially getting a second opinion as to treatment recommendations.

Using reliable scientifically supported sources of information is important. Sites like the National Institutes of Health, Melanoma Research Foundation, and the National Cancer Institute can begin to school you on what melanoma is, and the many treatments that are now available. Each of the treatments targets the cancer a little differently and what is recommended may also depend on the genetic profile of your husbands tumor type, where it has spread, and his general health status.

I hope that you have an exellent provider that specializes in melanoma, or get a referral to such a practitioner as soon as possible. Your husband may also qualify for one of the many clinical trials that are occurring across the country.

As to talking with your children, this is some of the language we used with our young adult children. We have talked directly with our kids every step of the way, but not until we know some information.

The place we started was something like this:

Dad's surgery produced a different outcome than we anticipated. He has a cancer called melanoma. Melanoma is a a particularly nasty kind of skin cancer, but it can show up anywhere in the body. We will be learning more about this cancer and which treatments may work best for dad.

There may be things I will ask you to read with us as a family so that we can answer your questions together. It can be helpful for each of us individually and as a family to write down all our questions as we think about this diagnosis and treatment as we move forward. I need to remind you that the internet is full of opinions and stories about all kinds of things, and there are some out there about melanoma too. Some of these stories are just that, an individual's experience. Some of the sites actually give misinformation about treatments that work/ don't work. What we are just beginning to know since we just got this diagnosis is that there have been some amazing new treatments that have come about in the past 5-7 years for melanoma and so that gives us hope for the future right now. And you may see statistics that may be frightening to you. We all need to remember that statistics are about groups of people across time regardless of age, gender and other complications and are not about your dad. We will talk together with the doctors about the specifics of HIS cancer, his body and his preferences to determine a course of treatment.

It's ok to feel what you feel and to have questions. We will work through this together as a family. For right now we will support Dad to heal up from the surgery and we will dive into the research for what to do next and then Dad and I will make decisions to best address his health needs. If you write down your questions we will do our best to try to get answers to them as soon as we can. This is going to be a bit of a rollercoaster ride for a while, but we will get through it together.

I know families have handled these conversations differently depending on the ages of their children and what they are capable of dealing with. Sometimes families want to have their older children present at medical appointments, and others do not, preferring to sift through patient / caregiver questions and feelings first, then approaching other family members. You and your husband have a lot to face, learn and absorb in the immediate future and I wish you the best. There are a lot of melanoma/ cancer specific language you're going to learn. Sometimes I still go to medical dictionaries online to keep me straight in my understanding.

I think if you look through this site you will see recommendations for specific helpful websites, ways to manage your own understandable anxiety, suggestions to consider palliative care as part of a treatment approach, and support to let folks provide practical, material, spiritual assistance to all of you as you have been thrust into this journey. One of the items my husband I also had to add into our early journey was to revisit and upgrade our wills and advance directives. We are now 3.5 years into melanoma treatment and are going to do this component again.

We remain here for you.

Missy

[HSsweetheart in reply to missyrand]

Thank you Missy

This helps. Especially about how to approach our young adult children. And the reminder about statistics and valid information sources.

[missyrand Ambassador in reply to HSsweetheart]

I'm glad it was helpful. Sometimes hearing how folks took various actions, their experience, can help with navigating big waves in heavy seas of early diagnosis.

[missyrand Ambassador in reply to HSsweetheart]

One last note: Melanoma can run in families. Another issue for you to tackle is that your boys should be taught really thorough sun safety, be praised for doing so (hats, year round when outside, long sleeves/ SPF clothing, shade seeking, use of sunscreen every day on exposed body parts like face, arms, hands, legs, feet, neck) and should be checked naked, head to toe, at least annually by a dermatologist who knows about the family risk.

See the MRF #GetNaked campaign to learn how getting naked for a skin check regularly can save your life.

join.melanoma.org/site/Page...

[strawberryjam in reply to missyrand]

A wonderful response, Missyrand . I wish I had read it earlier in our journey.

[Sunny44]

Hi HSsweetheart,

I feel for you and the emotions and worry you are going through. My situation is different as it's my 77 year old mom who was diagnosed with melanoma last fall and we didn't have the same issues with teenage children. But what I wanted to share with you is how important it is to be getting the best medical advice you can and to ask lots of questions to make sure you understand things. It was very overwhelming for us at first. I understand there are a number (10 or more?) of melanoma centers of excellence in the US which strive to offer the latest and best care. I think they have the most focused experts. Not That you can't get good care elsewhere, but this is something we learned and we are fortunate to live very near Ann Arbor Michigan that is one. If you live near one I would suggestion look into the possibility of getting care there. My mom's diagnosis went very quickly to stage 4 and she has an underlying immune disease that we thought made immunotherapy (the preferred treatment for stage 4 at least for her but I think generally) a poor option as it could trigger a worsening of her immune disease. The doctors were great in providing info and assurances that if it did trigger the immune disease they could treat it. She is 4 immunotherapy treatments in and is having great results! No side effects and her tumor (the one that made it stage 4 as it was away from the initial melanoma site) has shrunk dramatically and her lab results are good. The reason I share this is that the treatments for melanoma have improved dramatically in recent years and the poor outcomes associated with it are changing. I wish you and your family the best in this very difficult time and am hopeful that some months down the road when you know more info you'll be in a better place.

Sending love and good thoughts.

[HSsweetheart in reply to Sunny44]

Thank you so much for the words of encouragement. I am very confident with our local cancer treatment team but will also review the top treatment centers.

[Sunny44 in reply to HSsweetheart]

Good luck! We've gone from fear and great worry to hopeful optimism. It's definitely a roller coaster no one asks for. Just knowing treatment in this area is moving fast has been a comfort.