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Which Option Next

Which Option Next

Posted By
DharmaChris
6/10/2019 1:26pm
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Replies: 5

First some background. Last year I noticed a small lump behind my right ear (there was no mole or discoloration on the surface of the skin), and being a guy of course I ignored it. Finally after about 6 months my wife convinced me to have it looked at. I went to my doctor, and initially the doctor thought it was a cyst, but after it was removed the diagnosis came back as nodular melanoma, with an 8mm depth and ulceration. There were still cancer cells present at the margins, so a few weeks later they extended the excision. After this second surgery there was still cancer present at the margins, so once again they enlarged the excision and left the wound open in case they needed to further extend the area of excision. When pathology came with clear margins they went in to close the wound and try and find the sentinel lymph node. They were unable to locate a suspect lymph node.

At this point I’m considered stage II-C because a lymph node could not be located and therefore I’m told I’m not a candidate for further treatment. I’m presented with two options: 1) Have regular PET examination to see if further tumors develop, or 2) have a full neck dissection to remove all the lymph from the right side of my neck to look for cancer in a lymph node. I don’t like the uncertainty of option 1. I understand that option 2 may not find anything, in which case I’d be in the same position, but at least I’d know. I’m going to meet with my oncologist to decide on which option to follow. I’m leaning toward option 2, but I’d like to hear what other who’ve faced this situation have to say.

Edwin - (6/10/2019 - 5:47pm)

CLNDs do not increase survival time for people with melanoma. I had a CLND of my left neck with my SLNB in August 2014, when the SLNB found a trace of melanoma in a lymph node. The CLND removed 14 lymph nodes. That was done, before it became know that CLNDs do not increase survival time. I wish I had not that CLND. My left neck has hurt a little since August 2014. The CLND did not stop the cancer. Melanoma spread to my bones. Immunotherapy put my bones cancer into remission, but there is now melanoma in a lymph node under my left jaw near my CLND. In April 2018 a surgeon did not want to remove that tumor under my left jaw, because the CLND made surgery more difficult.

Cindy Lou - (6/10/2019 - 5:56pm)

Hi, I had a melanoma on my cheek, 1.9 depth ulcerated. Sentinel node mapping indicated the nodes in front of my ear as well as nodes in my neck as the sentinel nodes. I had the first wide local excision which was left open with sentinel node biopsy followed 2 weeks later by the second wle to excise more tissue and obtain clear margins. Only one cell of melanoma was found in a node near the parotid gland in front of my ear. No further treatment was advised at that time.
Seven months later, a satellite melanoma 1 cm from the original appeared and again a wide local excision was done. Still no further treatment was advised.
1 1/2 years after the second occurrence, I discovered a swollen lymph node in my neck. When biopsied, it was positive for melanoma. I had a PET scan which lit up in the neck area. I had a selective neck dissection and my parotid gland on that side was removed. 14 nodes were removed, 2 of which had melanoma. I have now had 11 infusions of Opdivo as adjuvant therapy.
Like you, I don’t like uncertainty, but just so you know something about the surgery, the neck dissection is major surgery which took 4 hours and for me brought a great deal of pain afterwards and just when I thought it was getting better, the nerve pain started. I experienced numbness in my cheek, my chest, and arm which lasted about 2 months. The nerve pain in those numb areas felt like itching that could not be scratched and at other times, it felt like bugs were crawling on me. This surgery can also cause lymphadema, but fortunately I only had the normal swelling which resolved after about 6 weeks.
Knowing what I know now, if I were in your shoes, I would elect to have the regular PET scans instead of the surgery, but we each have to do what we feel is best.
Warm wishes to all our melanoma fighters!

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; Opdivo since 11/2018.

doragsda - (6/10/2019 - 6:26pm)

I would opt for the monitoring with PET scans. You could have the dissection, find no melanoma, and your risk level really would not have changed; you would still need to have the regular PET scans to watch for any distant recurrence. My wife had her primary on her left leg, her sentinel nodes were clear so she was stage IIc, and 6 months later I had to take her to the ER on a Saturday night where two brain mets showed up on MRI.

BillB - (6/10/2019 - 8:36pm)

Hi, I had a 7 mm nodular melanoma. You can view my profile and are welcome to ask additional questions. I’m guessing if your tumor was 8 mm in depth and ulcerated it might also have neuro vascular invasion? What was the mitotic rate?I was stage 2c for 4 months before I became 3c and went stage 4 3 months later. Nodular melanoma is very aggressive. You might look to see if there are any clinical trials for stage 2 providing adjuvant treatment. I would at least look.
Bill

BillB - (6/10/2019 - 8:43pm)

You might look into this trial to see if you could get it. If I were stage 2c again and could try adjuvant PD-L1 therapy I would jump at the chance.
ClinicalTrials.gov Identifier: NCT03405155