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Potential Brain mets – terrified

Forums General Melanoma Community Potential Brain mets – terrified

  • Post
    Stefan Makhoul
    Participant
      Hi, my mum is currently a metastatic melanoma patient and has just recently been diagnosed. She had melanoma on her skin that was removed about 10 years ago with no lymph nodes testing positive, however its come back now. About three months ago, she had awful leg pain and a growing tumour, after it was removed it was discovered that she had melanoma, and an MRI has shown that some of it has metastasised to the lung. Before her surgery she had a full body MRI, which showed tumours only in the lung and a few lymph nodes, however she’s had another recent MRI and pet scan to investigate if those tumours have grown/ if they’re melanoma at all. However, when we spoke to out oncologist, she said that the MRI didn’t scan the brain (which I find a bit strange), and that she needs a brain MRI which she has just had. Recently she’s had weird symptoms that she hasn’t had before. She had a spell of nausea which was accompanied by a loss of her peripheral vision, however that only lasted for a few minutes  , since then (over the period of 4 weeks) she’s had two more similar incidents, however without any sort of nausea (mainly just loss of peripheral vision). However when these happen, they only last an average of five minutes and a maximum of 10 minutes. I’m obviously now terrified that she has brain mets, and that they’re beyond cure because she’s suffering symptoms. Is this a symptom of brain mets? Do symptoms usually last longer than such a short period of time or can they be spontaneous like these? I’m wondering if her treatment options are reduced because she suffers these symptomes, even though they’re not super severe and they only last a short period of time. I’m incredibly concerned because lots of literature says that once patients suffer symptoms there’s not much that can be done. While I of course want to hear good news, I also want to hear the truth.

      Thanks to anybody who has read this, I’m very distressed right now :(.

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    • Replies
        Beany
        Participant
          I had a brain met which was only found out months after my liver and lung tumors were discovered. My doctor didnt do a full body scan either.

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          AMcReader
          Participant
            Hi Stefan, I’m so sorry for what you and your mom are going through. I know how terrifying it can be.

            The best thing is to wait to see what the MRI says, but many people on this board have had brain mets, with symptoms and have recovered just fine. Personally, I had a tennis ball-sized brain met that was making it impossible for me to talk or write (a bit funny because in my non-cancer life I’m the VP of a communications team). Luckily, they were able to remove it, radiate the cancer bed and get me started on immunotherapy and I’ve been lucky to be 3.5 years cancer free in my brain.

            We are lucky to now have access to many great treatments that work in the brain. Hopefully, your mom won’t need to worry about it, but if she does, treatments are available.

            Amanda

            Joe Dubiel
            Participant
              I just found out that my oldest son, 45, now has melanoma of the scalp and it is across the entire top of his head. He is very upset about it and now, so am I.

              Does anyone know anything about this?

              Joe

              marta010
              Participant
                Hi Stefan – so sorry you and your mother are going through this.  My husband was diagnosed 9 1/2 years ago with brain mets, which have been treated and are still popping up so don’t lose faith.  You didn’t mention if she is currently on any treatment for her other tumors – both immunotherapy and Braf therapies can cause side effects, including vision issues unrelated to progression to the brain. If the brain MRI does find mets, there are treatment options for her.  Take care.

                Ann

                JudiAU
                Participant
                  Is it possible she had a full body CT or PET scan initially? (I don’t think I’ve ever heard of a full body MRI. ) Those are common and don’t include brain mass. The brain MRI is usually a separate order and many doctors do them routinely when diagnosed but not all. Even large brain mets can be treated. I had two koi/nivo combo, the brain met was resected, area was irradiated , I finished combo. Went to just have single dose. Brain has been fine since.
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