Boston doctors Mckenna and Martuza/ FSR at John Hopkins

[ppearl214]

Mac,

sending you hugs that this issue is resolved sooner than later.. let's get you back up and at 'em so you, me and CrazyRockerDude (Paul) can meet for coffee. You KNOW you are in the best of hands at MGH and thrilled you are hanging tough.

Hang in there!
Phyl

[krbonner]

Here's another Boston AN'er!  I'm in Littleton, MA.

After a year of the wait/watch approach, it appears that my tumor is growing faster than expected.  I had a repeat MRI yesterday at MEEI and a meeting with Dr. McKenna.  He's set up appts for me at the end of the month with Dr. Barker and Dr. Loeffler to discuss both surgical and radiation treatments.  Given the larger size of my tumor and my age (34), Dr. McKenna is recommending surgery, but wants me to meet with both doctors before deciding.  I was hoping to do the wait/watch thing a while longer, but that's not gonna happen.

If anyone has tips or advice on what to expect from consultations with Drs. Barker and Loeffler, please let me know!  (I'll post this in a separate thread as well.)

Thanks!
Katie

[Crazycat]

Hello,

        I had Drs Barker & McKenna at MGH. My surgery was on 9/21/05. I just saw Dr. Barker today for an 8 month consultation. So far everything is looking good: no regrowth.  I do have lots to tell about my experience. I live in Billerica, MA. Right now, though, I have to get going. I'll be happy to talk with you at length about any of this.
  For the time being, look for any of my posts under the user name "Crazycat" in any of the catagories, but especially the "Genereal" catagory. I'll be back later tonight.......

                                                      Paul

   

[ppearl214]

Katie,

You got the best connection in CrazyKat... I hope you have the chance to speak to him as he truly is the best to speak to about MGH and Barker, etc.... and Littleton, yep, I feel a round of coffee coming on!

Phyl

[krbonner]

Thank you Phyl and Paul!

I'd love to talk more.  I actually spent a long time last night talking with one of my neighbors who just happens to be one of the Radiation Physists that works frequently with Dr. Loeffler.  So it was great to get his perspective, although it is definitely biased towards radiation treatment.  So I'd love to get your perspective on Dr. Barker to go with that.

I meet for the first time with Dr. Loeffler on May 31 and Dr. Barker on June 1.  My AN was 1.5cm back in Nov 2005, but has grown since then based on an MRI this week (I don't know exactly how much), which is why I'm now moving beyond the watch-and-wait stage.

Katie

[Crazycat]

Hi Katie!


  Here is a link to the post with my MRI scans on it - if you haven't already seen it:  http://anausa.org/forum/index.php?topic=1257.0

Let Phyl or I know if you'd like to get together for coffee and discussion about this. We just had dinner last night at the Outback in Burlington! Both of us have been around the block in a big way with this problem: her with the radiation and me with surgery.

   You're lucky to live in the Boston area and have access to the hospitals and doctors we have around here!

   Stay in touch.....Paul

[ppearl214]

Katie,

I think we can get Paul to buy the coffee but shhhhhhhhhh... don't tell him I said that!

Phyl

Hi Katie!


  Here is a link to the post with my MRI scans on it - if you haven't already seen it:  http://anausa.org/forum/index.php?topic=1257.0

Let Phyl or I know if you'd like to get together for coffee and discussion about this. We just had dinner last night at the Outback in Burlington! Both of us have been around the block in a big way with this problem: her with the radiation and me with surgery.

   You're lucky to live in the Boston area and have access to the hospitals and doctors we have around here!

   Stay in touch.....Paul

[krbonner]

Let me know where the coffee is, and I'll do my darndest to be there!  LOL!

Katie

[Crazycat]

Katie,

  We'll let you know soon. I was wondering, how big is your A.N?

   Paul

[krbonner]

It was about 1.5cm last Nov, but has grown since.  By how much, I'm not exactly clear.  Dr. McKenna this week did say that while there used to be a space between the AN and the brain stem, that space is pretty much gone now.  He also said that while most ANs are the typical "ice cream" shape, mine is more "sausage" - it's pushing out the bony structures of the ear canal in addition to expanding outside the canal.

My only symptom is the near total hearing loss on that side (left).  I seem to have no facial or vestibular related symptoms.  And I'd like to keep it that way!  LOL!

Katie

[Crazycat]

Katie,

     Have you met Dr. Ron, Dr. McKenna's fellow? He's a great guy. He usually briefs all the patients before they meet McKenna. Both those guys came to see me while I was in the hospital a number of times. What are they recommending for you at this point: cyberknife or surgery? My growth was so far along I had no choice in the matter. I'm glad though that it was left to them; you're in great hands with those two - Barker & McKenna!!

               Paul

[krbonner]

I don't think I've met Dr. Ron.  At my appt last Monday, McKenna came in with a young-ish Indian doctor who I assumed to be his resident (I don't remember his name, unfortunately).  But McKenna did all the talking both then and when I came back after an impromtu hearing test. 

McKenna is definitely recommending surgery (translab).  Of course, I've also had long discussions with one of my neighbors who is a radiation physist at MGH that works with most of the AN radiosurgery patients, so he's very biased towards radiation.  I can see why radiation appeals and why it's the better choice for a lot of people, but right now I'm leaning towards surgery.  We'll see how I feel after my husband and I meet with both types of specialists next week!

Katie

[Crazycat]

Katie,

  The trend seems to be that if the growth is on the smaller side, then radiation is the way to go. I know that radiation works. My father, who is almost 79, had a bout with prostate cancer 5-6 years ago. He was treated with pharmaceuticals and radiation. The drugs brought his PSA down to practically zilch and then the radiation killed it. The radiation went on 5 days a week for 1 month. By the end of that period he was uncomfortable. Now he's back to normal. The doctor told him that there are two forms of cancer that nobody should die from any longer: Colon and prostate cancers. It's important to remain vigilant about these problems though. We're lucky in that the a.n. is non-cancerous!! Of course the other weapons we have are diet and exercise which also work wonders!!

                    Paul

[mac]

Katie,

My discussions with Dr's McKenna & Barker around radiation vs. surgery were about complete removal of the tumor vs stopping development or reducing size, effective length of time, higher possibility of re-growth, and more difficult surgery (if necessary) after radiation. I chose surgery and once it was obvious it was growing, as soon as possible - smaller is usually easier. Surgery on Friday and home on Tuesday morning...... Driving and back at "work" within a couple of weeks until meningitis derailed it all. Am now wrapping up 1 week of hospitalization & 3 weeks of home IV antibiotic and steriod treatment. Ready to spend this long weekend on the boat somewhere off the Maine coast. And available for coffee almost anytime....

[ppearl214]

Mac,

I have to ask.. the dr you spoke to about radiation... what form of radiation did they discuss with you? FSR/Novalis, Proton (at MGH), Gammaknife or Cyberknife? Each one have the ultimate same goals but.... there are differences and good outcomes. Just curious.

Phyl