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No primary source found…
My husband (Timpop) had a mass removed from is armpit in February 2025 and told me it was an infection in my husband‘s armpit. Come to find out once the pathology report came back it was determined to be stage four metastatic melanoma. A new mass has returned in the same spot, but this one is is now 30 cm big and it’s cutting off the circulation in his left arm and has contributed to a blood clot which now has cleared since he’s been on heparin. I don’t understand why the tumor is not being removed. From week to week it changes. One week they say they’re going to do the resection and then the next week they don’t want to remove the tumor. On Tuesday, July 15, 2025, I spoke with one of Timpop’s case nurses asking questions about his care and what the last PET scan results were. She told me that his chart states there are conflicting doctor reports from his last PET scan where the cardiologist is saying that the cancer is not affecting his arteries, but his oncology doctor is saying that the cancer is affecting his arteries. I spoke with one of the doctors on his oncology team on Wednesday, July 16, 2025 and she told me that my husband is a strange bird because they cannot find the primary source of where this melanoma cancer came from. They have done scans and tests and cannot find the primary source which is making it hard to treat. She told me he is currently on a dual immunotherapy treatment and they are alternating different types of narcotic pain meds to keep him comfortable. She also told me that my husband is in palliative care because there is no cure for stage four metastatic melanoma which took my breath away to actually hear this. I just rang the cancer free bell a year ago on July 1, 2024 after doing an extreme regiment of chemotherapy treatments, along with immunotherapy treatments, surgery with lymph nodes removal and radiation in my fight against stage two TNBC which is a cancer they cannot determine a primary source from. My heart is breaking to know and experience what my husband, Timpop, is going through. If they cannot find a primary source, does this really mean he has stage four metastatic melanoma or could it be something else similar to the type of cancer I had?
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@timpopandglamfee: I see you are new to Mayo Clinic Connect so please accept my welcome even though it's under the difficult circumstances you describe.
First of all, congratulations to you on beating cancer; as one who is going through immunotherapy myself for a form of cancer, I understand how involved that alone is. And now you are facing a very alarming and confusing situation with your husband.
There are times when the primary source of cancer cannot be determined as explained in this overview from Mayo: https://www.mayoclinic.org/diseases-conditions/carcinoma-unknown-primary/symptoms-causes/syc-20370683
It's hard searching for answers at a time like this especially when your questions have not been met with responses that are clearly definitive. It can be challenging to understand medical terminology, procedures and decisions particularly during emotional times. Most hospitals have case management teams and/or social workers who may be able to act as liaisons to assist with communication. They would be in an ideal position to assist with the individual particulars of your husband's case.
Can you ask what resources the oncology team or hospital staff has for you so you can get these details better explained to you?
Thank you @grammato3 !!!
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1 ReactionHi @timpopandglamfee, I am so incredibly sorry you and your husband are going through this. Your strength especially after your own cancer journey is nothing short of inspiring.
Regarding your question: yes, it is possible to have stage 4 metastatic melanoma without an identifiable primary source. It is called melanoma of unknown primary (MUP) and while rare, it does happen. In some cases, the immune system might destroy the original skin lesion before it is ever noticed, making it nearly impossible to locate. But once melanoma has spread to lymph nodes or distant organs, it is still classified as metastatic melanoma, even without a known starting point.
The confusion you are facing between the specialists is understandably frustrating. With such a large and fast growing tumor, the back-and-forth on surgery may be due to balancing the risks of resection vs. the potential benefit especially if arteries are involved or if immunotherapy is showing any promise. Palliative care does not always mean giving up on treatment,it often means focusing on quality of life while still exploring options.
I do strongly recommend asking for a multidisciplinary case conference where oncology, surgery, cardiology and palliative care can all align and speak together. If you are not getting clear, unified answers, you are well within your rights to request a second opinion, ideally from a major cancer center or melanoma specialist.
Your questions are valid. The system can be overwhelming especially when things keep changing. Just know you’re not alone many have walked this path and support is out there.
Sending strength and prayers to both of you. Please keep us updated if we can help you navigate next steps.
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4 ReactionsThank you, @nano056 !!!
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