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Stage 1 … but now in limbo (update)

Forums General Melanoma Community Stage 1 … but now in limbo (update)

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      Here's an update on our situation.  Hubs has had two primaries, on the jaw line and the scalp.  Both were caught early.  A recent appointment with an opthalmologist for a drooping eyelid and wandering eye had him in for a brian MRI.  Abnormalities were found by radiologist indicating possible vasculits (if on treatment for melanoma, which he was not) and/or perineural metastasis.  Anyway…

      We went ahead with the appointment with the neurologist in late August.  He said that the MRI was "unusual" and wanted to have another one in three months.  So .. we waited … and just had that done and had another appointment with the neuro.

      In the three months since the original MRI, the concerning areas have not changed.  That's good news.  Stable is good.  Shrunk or gone would have been better.  DH said "well, I'm getting older, so can't this just be some old age thing".  Neuro said no — that this MRI was definitely abnormal, and unfortunately it could be quite serious.  The radiologist has suggested a rescan in six months, but the neuro said he was still trying to decide if that long of a wait was prudent.  We talked about what this could be — and the answer was vasculitis, which increases stroke risk.  The other potential was leptomeningeal metastatic disease, which is obviously a major concern.  The neuro said that the area is right at the junction of the meninges and the cortex, and it is almost impossible to tell by imaging.  However, the only way to know for sure is a brain biopsy, and he really didn't want to put my husband through that since we are seeing stability. 

      So now we play the watch and wait game, with instructions to call the neuro immediately if and when any new symptoms pop up or get worse.  What we are dealing with now is severe eye pain (at the back of the eye), headaches, fatigue, drooping eyelid, and wandering right eye.  If he has another instance of the excruciating eye pain, we will see the doctor immediately.

      Not the answers I really wanted — as I feel we are still in limbo — but with my DH's wish to not do imaging any more frequently than six months, I guess it's the best we've got.

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          Hi Susan! What a tough situation! Speaking as a healthcare professional – PLEASE consider seeing a second opinion. This doesn’t sound like a “watch and wait” situation. If it is a met (aka a metastatic tumor) you should be starting on treatment rather than waiting around for 3 – 6 months. A second opinion may give you clarity on what’s going on as well as next steps.

          Wishing you and your DH health and happiness,


            If your husband has ever been on immunotherapy then maybe consider prednisone to see if it has a positive impact on the optical issue within the brain. I haven’t experienced vasculitis but have felt the impact on the optical nerve (double vision and pain) of hypophysitis. I know your husband isn’t on immunotherapy currently but if he has ever been on it then maybe it did change his immune system for an extended period.


            i hope it all clears up. I wouldn’t be able to handle ocular pain for 6 months till the next MRI. But I also can’t handle the opthamologist visits where they spin my eye to look at the far sides (ouch!).


                He's never been on immunotherapy, but thanks for the suggestion.  I'm sorry you have had the ocular pain — it is really intense!

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