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 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!

Monday, May 21, 2012

National Brain Tumor Society Bike Ride!

My dad, Daniel and I all rode the 50 mile NBTS Boston Bike Ride this weekend. We hit a few bumps in the road but we still finished. Overall the ride is much smaller than the MS ride I did last year but I think it's also much more of a "family friendly" ride too. There are also 10 & 25 mile ride options.

Right off the bat into the ride I hit a bad pothole (thanks Massachusetts roads). About 2 minutes after that I had a flat front tire. Luckily I have a spare tube and one the the roadside assistance guys pulled over and helped us get it changed out pretty quick but it caused us to be significantly behind the rest of the ride which was kind of a bummer.

Poor bike :-( First flat it's had too

Then around 30 miles (at the rest stop) Daniel's tire blew out. His turned out to be an issue with the rental bike and two tubes later, some masking tape & cardboard he was set to go. Overall my bike clock had 3 hours 15 minutes for our riding time, not too bad, we came in pretty late though because of our holdups. The whole event was pretty much over. I will say we were NOT the last ones in though, we did catch up to and pass some other riders, and there was a decent group of us at the 30 mile rest stop at the same time. 

Tire fixed, only 20 miles to go!

Total we raised $5135 for the National Brain Tumor Society, we were even #20 on the team overall fundraising list, out of 80 so not too bad for only three of us. I would LOVE to be able to put together a big group team for the ride next year. It is really not a bad ride (Daniel hasn't been on a bike since he was 12 and he managed just fine) and there are the shorter 10 and 25 mile options if 50 intimidates you. There are also 3 rest stops for food/water and some time out of the saddle. People of all ages (kiddos to the elderly) were doing the ride and of all athletic abilities, and on all kinds of bikes. No need to have a special bike or special shoes, any bike (with a good water bottle holder) will do really. So start thinking about it, it would be fun!

Oh and tomorrow, May 22, is officially Brain Tumor Awareness Day!

Sunday, May 13, 2012


Yes, I'm still here. Just don't need this blog quite as much anymore :-)
It's been a busy few weeks and looking to be a busy summer (people have got to stop getting married!). I spent last weekend in Oklahoma getting to watch two very good friends get married, in a beautiful ceremony before their next adventure of moving to South Africa...where I hope to visit at some point this year!

I had an MRI in April, I haven't had a chance yet to drive back to Hopkins and get the official report but it seems that all is well. There was an area of potential concern, but my surgeon thinks it's just scar tissue from the surgery. I will go back for another MRI in July.

Until then I have a couple events coming up, one of them being just a week away, the Boston Brain Tumor Ride! I definitely have not had as much time to prepare for this ride as I did for the MS ride last year, but this one is also one-third the distance so I'm hoping it will go well. If you haven't yet but would like to, you can still donate to support my ride by heading over to my fundraising page here. Every little bit helps and to the many people who have already donated thank you! I appreciate it so much!

I may not be quite ready for the ride, but  my bike is!

I hope everyone had a wonderful Mother's Day!

Oh, and May is officially Brain Tumor Awareness month! If you haven't had the chance before, take a look at some of the links of the right side of the blog, learn something new and pass it on!