Stage 1 — but now a concerning brain MRI

Thank you both.  That's certainly how I was leaning — after all, what is the harm?  

One of my friends died of melanoma about four years ago.  He had a Stage 1 melanoma removed from his thigh, and years later they found metastatic melanoma in the liver when he went to the ER for what he thought was appendicitis.  🙁  Keytruda was just hitting the scene in a big way, but it was too late for Trey.  I called his wife and asked who his melanoma specialist was in Denver (who works in conjunction with MD Anderson).  I emailed Dr. Gonzales with the situation and the MRI report, and he got back with me the same day saying "Yes, he definitely needs to be seen here.  The tumor might be meningeal, as well."  Our initial appointment is July 31.  

Hopefully Dr. Lewis will review everything and say "There's no melanoma metastases here — you've wasted my time!"

The nurse practictioner called yesterday and tried to cancel the appointment.  She said that they couldn't see my husband because they require that he has a diagnosis of melanoma before being seen, as they are a treatment center.  I explained that he did have a melanoma diagnosis, but she kept trying to say that he needed a Stage III or IV diagnosis in order to be seen.  

I don't get it.  He has an abnormal MRI with lesions.  Who else would I go to in order to rule out or confirm a melanoma metastases?  She finally agreed to let us keep the appointment, but said the tumor board might change that next week.  

So who do we go to?  How do we determine if this is melanoma or something else?  She suggested just going to a regular neurologist. I thought I was doing the proactive thing, but she made me feel really stupid.

They have confirmed the appointment.  Of course, now I feel like someone who has Munchausen's Syndrome by Proxy (wanting to make my husband sick).  I suppose I'll just tell the doctor that "with even a remote possibility of metastases we wanted to be seen by the experts".  And hopefully dear hubby will not downplay everything that has happened — he's a master at that once he gets in front of a doctor.

We had the appointment at the melanoma clinic.  We didn't get to see the director (the one who mentioned meningeal disease) but his associate.  Nice enough guy.  Did a cursory exam, asked a bunch of questions, and said "you look good"!  He said that the potential for a metastases of a Stage 1 after so many years was almost impossible, and that the fact that my husband has had these eye/head symptoms for many months was reassuring (i.e. if it were melanoma he'd be in much worse shape by now).  I asked him if he looked at the MRI and the report, and he said he had but couldn't even figure out what the radiologist was referring to.  He also said that when the melanoma box gets checked on the patient form, radiologists get overly cautious.  So, we were dismissed with a "call us if you need us".

I know it's good news, and we need to trust the experts. This disease is just so darn unpredictable.

Here's an update on our situation.

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.