Test results on 9/1/2020 report malignant melenoma, and I posted those results in my first post Newly Diagnosed. Met with Surgeon, Dr. Vivian Wu Sept 12, with Henry Ford Hospital. Because of the placement of the malignant melanoma at the crown of my head and the expected depth (she’s not sure as initial test was not a punch) she expects that in the wide excision she will have to go down to my skull. She’s recommending to the hospital’s melanoma board that I get a Pet Scan prior to surgery to help guide her. She says although the Pet Scan doesn’t point out specific cancer, she can see if there are lymph nodes flaring up particularly in the neck area. She couldn’t identify any swelling in her hand examination. So we are waiting to hear from the board. She ordered a sentinel lymph node test the day of surgery for possible lymph node removal during the surgery. She said if the lymph node activity is aggressive, she might recommend neck excision but that’s the worst case scenario.
- September 13, 2020 at 4:30 pm
She sees another area on my scalp she thinks may need to be addressed in this same surgery, but a smaller spot.
She advised she wants to leave the scalp surgical wound open until the test results come back to be sure she got all the cancer, explaining that the margins test for malignant melanoma doesn’t happen like in Mohs surgery where they can test the margins right during the surgery. She said there are unique dyes and testing done specfically for this type of cancer in this satage. That’s kind of freaky thinking about that. She is talking with the plastic surgeon as to approach to closure. So I assume it will be some kind of flap or taking skin from some other area. I am totally unclear on that next step but a separate surgery for reconstruction.
She explained immunotherapy to me and said I should mentally prepare myself for that possibility.
Doctor also said at this point, going to a specialized cancer center (for us, U of M) is not necessary, as the main difference is their range and large number of trial tests. She assured us she would tell us in future if she recommended we go to a specialized center. She is also talking with my current dermatologist to see if he wants to manage my melanoma. I assume I will also be assigned an oncologist, waiting to learn more about that. It’s all very confusing right now. My PC is also in this hospital system, but he told me at this point I’m in the hands of the experts.
I have a possibility of getting the surgery this week, or waiting if I can’t get all the scans and prep tests done. Latest getting surgery is September 25. Any advise or words of wisdom are very much appreciated. I plan to read through the links others have posted to help get educated on this disease. Sadly we lost a very close friend one year ago – someone in his mid 50’s – to this disease but he had no external identifiers. . It has progressed to multiple areas of his body and from diagnosis to death he had 3 months of illness. He was getting physical therapy through workman’s comp because he had a lot of pain in his body and doc thought it was problems from his job. I hope I’ve caught this early enough to have a chance at overcoming it. I had a light brown spot on my head that the dermatologist one year ago told me was a cosmetic age spot. In late August, 2020, I bumped my head really hard right on that spot getting out of a golf cart and the scab was very irregular and grew into a small tumor in a matter of 7 days. It may be that the golf card saved my life! Thanks for listening.
BubblesParticipantHello again, Mr. Bill. Sounds like you have a good surgeon and a good plan! Yes, if your docs and institution are familiar with melanoma and take care of a fair number of melanoma patients, then I don’t think you need to seek care elsewhere at this time. If you are interested in more information about immunotherapy and other info related to melanoma then you may find the links I posted for fellow poster, Dukester, beneficial. Link to his thread – https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/dazed-confused-mostly-scared
- September 13, 2020 at 5:21 pm
It all gets confusing fast, doesn’t it? But, it will all gradually become more clear, I promise. Take care and ask more questions as you have the need.
PS Given the his struggles and ultimate loss of your friend to melanoma, you are well aware of the devastating effects melanoma can take. And while it too, can go to the brain and create leptomeningeal disease, our sweet Julie, whose post you commented on, is dealing with non small cell lung cancer that has metastasized there, currently.
Johnjk04ParticipantMr. Bill, you just one tough and one great item happen to you. You were diagnosed with melanoma and you wisely picked this forum to follow. You will find some of the best oncology advise here. Some people here will have more information for you than you doctor will.
- September 13, 2020 at 7:06 pm
I am very sorry that you had melanoma taking a part in your life. The oncology world has changed and you have a very good chance of ridding yourself of the melanoma.
I started in 2008 and in 2012 the melanoma went full force. January 2012, I had melanoma in my brain, both lungs, liver, kidney, gall bladder and spinal cord. Some craniotomy, Gamma Knife and the initial Ippy / Nivo trial sent the melanoma packing.
My advice, don’t marry your oncologist. If you feel that you are not getting proper care, move on to a better oncologist.
I know one young melanoma patient from Tennessee that traveled to Tampa FL for her care. This was back in 2011, pretty sure that she’s still alive.
Mr. Bill, take good care, we’re all here for you. Looking forward to reading about all of your successes here.
- September 15, 2020 at 4:40 am
Initially, my dermatologist referred me to a melanoma specialist at a major university hospital. In that department I was also assigned a surgical oncologist who did the SNLB and WLE. A plastic surgeon stepped in to place a temporary wound covering over the 3 inch diameter hole in my heel (down to cartilage and bone) using cadaver skin. I was then sent home for a week awaiting the biopsy results of my SNLB And WLE margins. Only after I got a negative biopsy result did my second procedure take place. To reconstruct my heel, A limb reconstruction specialist plastic surgeon performed a full-thickness skin graft from the thigh of my unaffected leg with micro-vascular vein attachments. A year later I had another touchup procedure where the graft was de-bulked and tightened up. I got an amazing outcome with an absolutely complete return to all function and activities.
I look forward to hearing more details as you progress with your care.
Best of luck!
Thank you! The WLE and SNLB are now scheduled. CT scan of next and head came back looking good so that was a positive for this week. Waiting for the plastic surgeon consultation so I can understand what exactly she will do (advancement flap – on top of my head. They are going down to skull and probably shaving some of the bone. Doc says that bone is thick. Yep, my wife says I have a thick skull sometimes LOL.
- September 18, 2020 at 5:58 pm
Hi Mr. Bill,
- September 20, 2020 at 11:25 pm
That is really good to hear. It is all about these kind of individual victories…one at a time!
Now, we sprint to the next hurdle. This is a race you can…and will win! Keep busy and stay positive!!!
Please keep us posted on your progress.
Best of luck,
Mark 2A (10 years NED)
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.