Thursday, May 24, 2012

Second...and Third Opinions.

So, when I got my original diagnosis back in January I was fairly content with it. The option came up to get second opinions if I wanted to but at the time I declined. I figured that I was being monitored and if something turned up we would deal with it. More lately I've just felt annoyed and dissatisfied that I didn't get a "clear" diagnosis. My exact diagnosis from Hopkins was a "circumscribed astrocytoma with unusual features". Now there are many kinds of astrocytomas but they listed it as "difficult to classify" and could not determine which type it was. They also pointed out the "worrisome and concerning" features which included characteristics of higher graded tumors (mitosis - active cell dividing & necrosis - dead tumor cells). They named a few tumor types that it could have been but in the end didn't settle for any of them. Ultimately based on this my doctors have chosen a "watch and wait" approach. That is fine and I am ok with that but lately I have been craving an actual diagnosis...if there is one to be found.

This has led me to searching for second opinions. It's difficult because overall Hopkins is supposedly known as one of the best hospitals for neurological care and treatment. I have confidence in my doctors and am forever grateful that I have such a wonderful surgeon...so by getting second opinions I feel like I am doubting them, and I hate to make anyone feel bad! There is also a pathologist at Hopkins by the name of Peter Burger that I have been told by many people (none of whom have any affiliation with Hopkins) that he is the "best" neuro-pathologist in the country. He did not do my original report but I called and asked for him to review it. He didn't write a new report but called me back and said he agreed with the original and would be worried had all the tumor not been removed but was more reassured that it had been. In any case, I finally decided to just get the second opinions. It can't hurt (though it can definitely confuse!). For right now I am only seeking second opinions regarding the pathology - meaning that I have had my slides sent to other hospitals for their opinion but will discuss those results with my doctors at Hopkins. At this time I haven't considered seeing any specialists from those other hospitals.

The confusion comes when hospitals don't agree with each other. Then what? Especially to have 3 or 4 of the top centers in the country all saying different things. How do I and how do the doctors decide which diagnosis is "right"? How do we decide if treatment needs to change? I am doing just fine right now, why throw treatment into my life if it may not be needed and then feel crappy? And here is the problem with brain tumors. It all comes down to there not being enough research, not being enough known treatment plans that work, not being enough definite information like there is for other types of cancer. No two patients end up on the same path. Some peoples tumors grow and others don't and there is no way to predict how any single person will react.

For now my slides have been sent to two hospitals. Dana-Farber in Boston and Memorial Sloan Kettering Cancer Center in New York. I have received Dana Farbers results back already and found out today that MSKCC had completed their report and sent it to Hopkins already. Now I just need to get my hands on it. It may take a while before I get it depending on their protocol...and because I am travelling next week, if I have to drive to Hopkins to get it it will probably be a while before I get a chance to. In any case I will say that Dana Farbers diagnosis was pretty different from Hopkins...but I will share more on that when I see what MSKCC had to say. For another post...

I hope everyone enjoys their Memorial Day Weekend...basically the official "start" to summer. I will be working all weekend but then next week heading out west to California so I can't wait!

1 comment:

  1. Hi Erin-

    I just stopped by to check on your blog, and was a little surprised by this post. I think you are doing the right thing. Just having the opinions of several teams of pathologists seems like a good idea, especially since your initial report was a little unclear. You are young, and have a chance to survive a long time if you are treated properly. I just wanted to give you a little encouragement. My best to you.

    Scott in Indiana

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