Wednesday, February 25, 2015

Super Toe to become Surgery Toe

Sorry, no pictures, just information. 

Superficial Malignant Melanoma. 

It's still hard to say that. I have skin cancer.  I've gone to calling it "toe cancer".  Post about Super Toe update.   Post about Super Toe & original biopsy. 

Friday (20th) I ended up having my appt/consultation with the general surgeon, thanks to the GI, a week earlier than planned.  

I was suppose to have my Remicade on the 17th.  My Gastro acted like he had never heard of my calling in about the Melanoma. He was going to call a Mayo doc he had worked with at a different hospital to ask about my condition, medicine, then my PCP and the general surgeon. 

He didn't want to  me to have my Remicade and said we'd schedule that later, if again.  He said, contrary to what the CCFA said, that there  was no way to prove that Remicade causes melanoma. Given his behavior and such, I wonder if it was a CYA statement.   Really.   Especially with the 'we may not give it to you again'.   Not that I'd have it again once the Melanoma/toe issue was resolved, but that "we may not give it to you again'.

The danger is if a person who regularly is given Remicade goes off the medication, that, when the patient is given Remicade in the future, the person would have a 30% chance of having a negative reaction. I've never asked how they'd treat a "negative reaction" since the medicine would be in one's body for at least eight weeks.  

Ever the optimistic person, I read that as there is a 70% chance I can go back on it. Alas, the medical world doesn't see it that way. 

My mind was prepared to have an appt with the general surgeon for the 27th, not the 20th.  I wasn't all that happy that the Gastro had to suddenly make sure this appointment was ASAP.  More so that The Mike had taken the 27th off from work in order to be with at this appointment. Now it meant that I'd be going to the surgeon's office on my own. Yes, I'm a big girl. Yes, I should be able to do this on my own. No, I don't want to. (pout).  Plus, I want more people who are on my side and can remember what is being said--even though I take notes--than what little information the doctor ends up putting in his medical notes.  The Mike had a conflict at work and could not be at my appointment. 

Adding to my frustration for the day, the Gastro told me not to eat before the appointment in case the surgeon did the biopsy that day in the office--seriously? without a driver for me? My PCP told me that a large area of skin would be removed by the surgeon, so I had a hard time believing he'd do this in office.  Once I found out that the appointment was at 11:30am I said there was no way I wasn't eating. So I had breakfast, of course it was after the headache set in for not eating. :-( 

Surgeon: Great guy. Nice, personable. Is a runner. First, he threw me off by asking if I've been feeling okay lately. I said, "well, compared to how I've felt for the last four years that no one is able to tell me why, yes". So I explained the tired, the fatigue, the lack of energy, the bruising, the feeling of running 10 miles after running 3 miles, that I've increased my magnesium and feel a lot better.   His reply?   Have you seen a rheumatologist?  A rheumatologist could probably help you with these symptoms. Really?  Why would my PCP and GI never suggest such a thing!

The surgeon also always refers all cancer patients to the oncologist for a discussion/talk through. Wow.  This stuff is getting real (mom would be proud to know I didn't type my "favorite" word). Not only do I need a biopsy for the Melanoma (gulp, again, reminding myself I have cancer). I have to also see the oncologist (gulp, gulp). 

Surgery will be in the hospital because the location will be tricky to get to, and there is a nerve that runs up that toe.   light bulb moment. Ah, this is why the toe has been so very sensitive in this location!  

Basically he'll cut out the area more fully, then sew it up. The nerve will probably be cut, which means I'll have a lack of feeling in the toe forever then.  If it's not fully cut, it could  mean I'll have the 'drunk tingly skin' feeling as after the knee surgery. It took about five years for that to go away completely. The cut/removal will basically look like an eye. 

Draw an eye on a piece of paper, iris, pupil, open eye lids.  The tiny iris would be the melanoma, the pupil (1 cm diameter) skin removal for cell removal, and then the open eye lid are is the basic cut where he would draw the skin (tight) and close it in a straight line.  The end of the cut on the top of the foot would be about half an inch and then about the same on the underfoot as well.  Go ahead, look at your toes. How much skin do you have there to take a 1cm out for this.  My mind is saying OWIE and the surgery hasn't even happened!  

I will also have a lymph node biopsy performed.  My melanoma was .5mm and if it was .76mm it'd be an automatic biopsy, but since mine is smaller, it's just an option for me, which we'll take.  It was .5mm at the time I caught it, who knows at surgery time.  

Oncologist. Nice woman.  Met with her yesterday.  She said if the spot was 4mm or larger, then there would be drug involvement, but at .5mm, there won't be--on her end.  Also, told me that Remicade doesn't necessary "cause" melanoma, but that in addition to suppressing the immune system that would want to fight my colitis, it also suppresses the immune system that helps protect against cancer.  So much information to absorb!  

As of now, the surgery to remove the melanoma fully is April 9, which works with the surgeon's, The Mike's, and my schedule. After that, no running for at least 3 weeks, minimum, per the surgeon. He said no way, no how would I be running before at least three weeks from the surgery date. My mind said "Darn" but also is happy he can say that honestly up front. I'd hate to be told that I could be doing something a week out and then not. 

Snagged this from the CCFA facebook page

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