Oct 20, 2020 Latest post:
Nov 15, 2022
In early September Em recognized a swollen lymph node on the left side of her neck. Thinking her body was fighting something she closely monitored it for a couple weeks with no signs of it shrinking and no further symptoms. She scheduled a visit with her primary care provider who suggested ultrasound for imaging of the lymph node. The ultrasound was abnormal so Em was sent for biopsy of the Lymph Node. On September 29th Emily received news that the biopsy was consistent with Metastatic Melanoma.
The goal of the following 2 weeks became to find the primary source of the Melanoma. Those cancer cells in her neck had to originate from skin cells somewhere on her body. Skin that never sees the light of day, eyes, mouth, nose, throat, and even the pelvic area were all fair game and to be checked thoroughly. A Dermatologist did a head-to-toe skin exam in which they were only able to find 1 questionable area. That area was Biopsied and was found to be Benign. A PET scan was conducted and revealed a cancerous mass in the lymph node region of her neck. This was to be expected due to the biopsy results of the mass, but also left more questions as to the primary source of Melanoma because no other areas lit up on the scan. Emily was then sent to an Oral Maxillofacial Surgeon who looked in her nose, mouth and throat and concluded that he wanted to take a closer look by doing an exam under anesthesia. During the exam under anesthesia, the surgeon did not see any areas of major concern but took a biopsy of some tissue to confirm his visual findings. That biopsy came back benign. Emily then underwent a head and neck CT to take a more in depth look of that region. The only abnormal finding from the CT was the same mass in her neck that was detected through the other tests. Emily was then sent to an OB/GYN that performed a pelvic exam and ultra sound. No abnormalities were found in her pelvic area. At this point, Emily had been checked head-to-toe, inside and out, in search of the primary melanoma with no signs of it anywhere. The Doctors started to indicate that it is possible that the primary melanoma, wherever it originated, was fought off by her own immune system. If that was the case then it was likely that in the process of fighting off her primary melanoma, scar tissue was left behind in the place of the melanoma. This would cause the skin to have a lack of pigment in that area. To check for any changes in the pigment of her skin, Em was sent back to the Dermatologist for another head-to-toe exam but this time with the help of a Wood’s Lamp (blacklight) that would highlight any changes to the pigment. That exam was not able to find any abnormalities either.
Up until this point there had been no talk of treatment plan or prognosis really. Just bits and pieces of options that involved an inevitable surgery to remove the mass in her neck and immunotherapy. Needless to say Emily was eager to come up with a plan and start the fight. On October 13th, Emily made her first trip down to the Mayo Clinic in Rochester. Emily was referred down to the Melanoma Oncology and Surgical Team at the Mayo in hopes of there being a treatment trial that she could be a candidate for. The Oncologist at the Mayo reviewed the case notes and determined that we can now classify the cancer as Stage 3 Metastatic Melanoma with Unknown Primary. He hypothesized that Ems primary melanoma likely originated somewhere between her shoulders and the top of her head, and that her immune system recognized the primary melanoma as foreign cells and was able to kill it, but not before some of those cells made their way in to her lymphatic system. He talked about the possibility of it originating in her eyes (which hadn’t been checked at this point), or mouth, throat, nose, but said it was highly unlikely due to what information he had from the biopsy. She was given 2 treatment options; the first would be considered the standard treatment for melanoma in which she would undergo surgery immediately to remove the tumor in her neck and surrounding lymph nodes, then following recovery would have immunotherapy for a year. The second option is to take part in the trial at the Mayo clinic. The trial would consist of Emily getting treated with a combination of immunotherapy and targeted cell therapy for a 12 week period, then undergo surgery to remove the mass in her neck, followed by another 6 months of immunotherapy. If at any point in the first 12 week period there are indications the cancer is growing, Emily would undergo surgery at that point, and then move forward with a standard melanoma treatment.
It was a lot of information to take in and a very emotional day for us. To be given a scary prognosis with no clear cut “this is the best treatment for you” was very difficult to digest and decide which direction to choose. If you choose the trial and cancer spreads during the initial treatment, would it have spread anyway? Would surgery to remove the mass now stop that spread? Who is to say that those cells aren’t growing as we process this information right now? Ultimately we posed a simple question to the oncologist the following day, if this was you or your loved one what would you do? Without hesitation he said I would say to take part in the trial. He added, “ if it was my sister I would tell her to do the trial…… and I like my sister”.
With all the information we had at that point it seemed clear to us that the most aggressive way to fight the most aggressive form of this cancer was to be by taking part in the trial. Emily signed on with the team down at the Mayo for the trial on October 14th. The goal was to start the trial with the first treatment on October 21st. In order to get cleared for the trial , Emily had a few full days of appointments down at the Mayo that included another biopsy of the tumor, EKG, Heart Echo, blood draws, and an Ophthalmology exam. Ultimately Emily and I were relieved to have made a decision on the treatment and felt like we were finally getting the ball rolling. Finally able to get the fight started.
Emily is a doer, an amazingly positive, selfless, strong competitor that will fight this thing tooth and nail. WE all are embarking on a hell of a journey here and we can’t thank everyone enough for the love and support. There will be bumps in the road, but we will face them head on and always looking forward, staying positive along the way. We love all of you and will keep you updated as information comes in.