Hello. I was recommended to you all by the Auburn Group on FB. My husband was diagnosed with superficial spreading melanoma of the head/neck, between stage I and II. He had reconstructive surgery on his cheek, jaw, and neck area. He declined a sentinel node biopsy. This was early November 2017. He was 44 yrs. old at the age of diagnosis.
In July 2018 (last month), my mom was diagnosed with ocular melanoma of the choroidal. She also has end stage lung disease. She cancelled her appointment with the retinal specialist due to fear, but after gentle support from us and her ophthalmologist, she is scheduled for her ultrasound on 9/7/2018. She is 77 yrs. of age.
Here's my issue, what is the likelihood of my mother and partner having a diagnosis of Melanoma in an 8 month period???? My partner and I are her caregivers. I know that two people don't make a cluster, but I have a fairly decent grasp on the statistics and methodology, and this seems so improbable, yet here we are. Has anyone heard of a cluster like this? Are there any identified oncogeneic viruses?? I am completely without words.
I'm curious if there are research investigators out there that might be interested. I'm certain my mom and my partner would volunteer for a study.
Written by
BJH75
To view profiles and participate in discussions please or .
I'm very sorry to hear of this melanoma burden in your family.
I am not a researcher in this area, but I heard about some odd cluster presentations of melanoma that are being tracked on the east coast about 2 years ago at the melanoma research foundation (MRF) advocacy training in DC.
Here is a link to a story from CBS: cbsnews.com/news/ocular-mel... and a summary that after investigating the researchers have no idea why this cluster of 18 young women in the same community have developed ocular melanoma in Huntersville, NC: wcnc.com/article/news/inves...
One place you may want to contact is Dr. Orloff at Thomas Jefferson University in the Sidney Kimmel Cancer Center in Philly as he appears from the article to be tracking this cluster pattern from Huntersville, NC and Auburn, Alabama.
As to how rare your experience is, it's a good question. The research indicates that if you have one kind of cancer you are at increased risk to develop a second type in your lifetime. I know of several persons who have had 2 different kinds of cancer (not spread of an original cancer type, but a completely different cellular cancer).
You may want to look at the Facebook group for Huntersville, NC where the cluster is among unrelated girls from the area. They have taken a very public faith stance in regards to how they are living with ocular melanoma and there was a July 25, 2018 article about them in People Magazine: facebook.com/eyecancercluster/
So those are some resources to get you started, but I want to also respond to you and your partner as caregivers at an emotional support level. This is hard stuff. And you've got extra complicating factors that you're sorting through right now. We encourage you to take care of yourself, too, so that you are prepared for this long process. We know you are doing the best you can to become informed, to encourage your loved ones, to assist in making the best decisions you can with/ for the person living with cancer and the family around you. We are hear to listen and support you.
There may also be a melanoma specific support group in your area. Your cancer provider may know, or the MRF can help put you in contact with a group if you want to see if there are trained facilitators like my husband and me or oncology social workers who may have a group like the Inova Life With Cancer Center has in northern Virginia (lifewithcancer.org/). MRF also has phone/ email buddies that they can match you with for support.
Thank you so much for this information. My mom's opthamologist recommended the doctor in Philadelphia, but she's unable to travel. I may call though. Perhaps her doctors can consult with him.
Im so sorry to hear this. It feels unreal to have my closest family (the loves of my life) going through this. I know you understand. My heart is with you.
They have identified a plant compound ( present in the primrose family of plants) that shuts down tumor growth a the Washington University School of Medicine in St. Louis. Note this research is very new and will next go to mouse models to see if it can treat ocular melanoma.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My daughter has passed
