Author Topic: 3 yr wait and watch is over time to act  (Read 11436 times)

DHJ

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3 yr wait and watch is over time to act
« on: May 05, 2011, 07:00:19 pm »
Hi all   It has been a good three ride waiting and watching but my MRI yesterday indicates that the time has come for treatment. My symptoms are stable but my AN is approaching 3CM. Dr. McKenna at MEEI wants me to meet with Dr. Baker or Dr. Leoffler and choose. There are many pros and cons to both surgery and protons and Heaven knows that I have spent Days reviewing my options. Many of you have shared your journey with me and this has been helpful.THANK YOU.I want to wait and watch forever and seem in capeable of choosing a treatment. Currently I am healthy, happy, but scarred. HOW DO I MOVE FORWARD.   PEACE DHJ
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

TJ

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Re: 3 yr wait and watch is over time to act
« Reply #1 on: May 05, 2011, 07:50:38 pm »
DHJ

Your doctors are correct in saying now is the time.  It is clear that your AN is growing, and the larger it gets the harder it is to treat.  According to my doctor you have already passed the point of what can be treated with either GammaKnife and for sure CyberKinife.  I think that only leaves surgery. 

Best of Luck

TJ

ppearl214

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Re: 3 yr wait and watch is over time to act
« Reply #2 on: May 06, 2011, 03:43:24 am »
Hi DHJ and thanks for keeping us updated.

It is usually 3cm as the "cut off point" for treating ANs with radio treatments, although, on occassion (as noted by the drs on the cyberknife forum), some ANs larger than 3cm have been treated with radio.  Dr. Barker/McKenna and Loeffler at MGH/MEEI are truly cream of the crop in the New England/Boston area for AN surgical removals, as well as Dr. Elizabeth Claus at Brigham/Womens (she is also a member of the ANA Medical Advisory Board).  If surgical removal of the AN is the direction you now research, you certainly have wonderful choices here and know that you will do what is best for you and your unique AN situation.... all the while, with us cheering you on.

Hang in there and please keep us updated to what MGH/MEEI tells you (many here, as you may know, treated surgically by the team you note.... you can "search" MGH/MEEI here on the forums).

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: 3 yr wait and watch is over time to act
« Reply #3 on: May 06, 2011, 01:12:46 pm »
Hi, Dave ~

I'm sorry to learn that after 3 years the watching and waiting is coming to an end and you're forced to make the tough decisions that all AN patients eventually have to face.  We know its confusing.  Let's be honest, what we all fear is making the 'wrong' decision and regretting it, later.  Unfortunately the risk factor with AN surgery or radiation is unavoidable, the tumor being located where it is.  The best any of us can do is to try to minimize those risks a bit.  You've already started that by having the esteemed Dr. McKenna and the other physicians at MEEI on 'your' team.  These are excellent doctors with lots of experience treating acoustic neuroma patients.  My neurosurgeon and radiation oncologist both mentioned that the debulking/radiation approach I underwent was pioneered at MEEI and that the success rate was near 100%.  That sold me.  I had tumor reduction surgery (reducing the AN from 4.5 cm to 2.5 cm) and it's blood supply was surgically severed.  Following a 90 day 'rest period' (I had no complications from the surgery and recovered rapidly) I underwent a carefully 'mapped' FSR regimen (26 sesssions over 5 weeks ) and within a few years, the resectioned and radiated AN was showing signs of necrosis (cell death) and had begun to shrink.  I was fortunate but hardly an anomaly as many AN patients have had similar outcomes.   Jan ('leapyrtwins') is one.  She posts here frequently.  

Of course, in the final analysis, you have to make the decision on what form your treatment will take.  We all have to deal with that at some point and it never gets easier for anyone, but it must be done.  I would suggest that you try hard to avoid allowing the 'what-if's' to overwhelm you.  Yes, whatever procedure you chose will carry some inherent risks but they are just that: risks - not absolutes.  I faced the same risks any AN patient  has when opting for retrosigmoid surgery, then FSR.  Lots of things could have went wrong.  I knew that and I went ahead, anyway, because I had to.  The tumor had grown and was not going to stop growing or just disppear because I was worried about the possible problems surgery/radiation might bring.  My compassionate neurosurgeon told me unequivocally  that "this thing can kill you".  He was not the type of doctor that normally engaged in hyperbole, so I believed him.   I also trusted him, implicitly.  This is a major factor.  You must have complete confidence in your doctor(s) and feel that they are 'on your side' and will do everything to help you come out of surgery (or radiation) with no or few complications.  They cannot guarantee anything, only their integrity, which is crucial.  Many of us went into surgery with that kind of confidence and I truly believe it helps our state of mind, enormously. Well, it did for me.  I also believe in prayer and used it at the time.  Still do.  So, I'll pray that you can break free of your inertia by surmounting your fears and move forward to do what must be done for the sake of your health.  We're a support site for AN patients and we'll be here on the forums to advise, answer what questions we can and, most of all, encourage and support you as you move forward.  

Jim      
« Last Edit: May 07, 2011, 12:52:25 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Rivergirl

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Re: 3 yr wait and watch is over time to act
« Reply #4 on: May 06, 2011, 06:49:03 pm »
Dave,
Sorry you have to make a decision.  I am a patient of Dr. McKenna's and had to make a decision this year as well.  I went to see Dr. Loeffler, he is amazing and will tell you if he can help you or not, he was straight forward with me and came right out and said he could not help me with my tumor because of the location.  I was so glad to have talked to him before I talked to the surgeons so when I went to the surgeon there was no decision for me to make my only option is surgery.  I am not looking forward to having it but I am looking forward to have this whole thing behind me.  So I guess what I am saying is you will feel a whole lot better after you speak to these other Dr's.  Good luck with your decision, the team at Mass General is one of the best, I am putting my life in their hands in a few weeks and feel confident......keep us posted.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

DHJ

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Re: 3 yr wait and watch is over time to act
« Reply #5 on: May 09, 2011, 08:56:20 pm »
Thank you for your support and info. I am currently waiting for a call back from Dr. Leofflers office. He is supposed to review my current MRI and let me know if I am still a candidate for Protons. If not then I am off to Dr. Baker and McKenna for surgery. Maybe my decision will be made for me  . Your support and prayers mean a lot to me,they keep me from getting overwhelmed by my sometimes crazy mind.  Peace Dave
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

lholl36233

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Re: 3 yr wait and watch is over time to act
« Reply #6 on: May 14, 2011, 06:24:49 pm »
Hi Dave,

I remember talking to you about my proton experience.  Thinking of you and looking forward to your updates.

Laura
Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

DHJ

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Re: 3 yr wait and watch is over time to act
« Reply #7 on: May 15, 2011, 07:26:17 pm »
Thanks all   I am waiting to be placed in Que ( MGH lingo for in line ) at the Burr Proton Center MGH. Thought that I was Starting Tuesday but they made a mistake. The decision is finall y made and I have found some peace. Will keep you posted.   peace Dave     
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

Rivergirl

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Re: 3 yr wait and watch is over time to act
« Reply #8 on: May 20, 2011, 07:43:45 pm »
Hope all is going well and you are at a peaceful place, best wishes for complete success.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

leapyrtwins

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Re: 3 yr wait and watch is over time to act
« Reply #9 on: May 21, 2011, 10:17:14 am »
Good luck.

All I can say on making a treatment decision, is follow your gut and your heart.

Do what you feel is right for you once you have all the information.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

DHJ

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Re: 3 yr wait and watch is over time to act
« Reply #10 on: June 02, 2011, 04:42:50 pm »
SOOOO Dr. Leoffler at MGH thinks that I should not consider radiation and need surgery because of the size of my tumor( 29mm )and it's location (against my brain stem). If my tumor were to swell it could lead to serious complications. Wait and watch is over and I will be scheduling surgery next week with Mckenna/Barker at MGH. The tumor made the decision for me.   Dave
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

Jim Scott

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Re: 3 yr wait and watch is over time to act
« Reply #11 on: June 03, 2011, 02:13:44 pm »
Dave ~

Thanks for the update.  I had the same situation (4.5 cm AN - surgery the only option) so I know how you must feel.  You have excellent AN-experienced doctors on your team and I'm confident you'll do well.  Thoughts and prayers for you, of course.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

nftwoed

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Re: 3 yr wait and watch is over time to act
« Reply #12 on: June 03, 2011, 03:49:32 pm »
Hello;
  Just my 2 cents. You are in sort of a 'catch 22' or 'half dozen or 6', decision area.
  I've read it over and over, an AN resected surgically has potential for increased problems if 2.00 cm or more.
  You say, "approaching" 3 cm. ( MRIs vary ) and that is cut off point for most physicians performing radiation, though I have read some will GK at 4.00 cm.
  Re, radiation and brain stem proximity, I used to believe one shouldn't do such, but in the last couple years have read some success stories this method.
  On another support group, a pt. had Proton Beam performed on a brain stem tumor and is just finishing the numerous fractions. They reported no ill effects during Tx. Proton is unique as the radiation does stop at the tumor margin rather than spreading out or passing through the opposite side of the head.
    In larger ANs, preservation of the facial nerve becomes more challenging, and hearing even more if you have any at this point.
  I guess ultimately, a choice comes down to your 'gut feelings' and Dr input. Just make sure the Dr isn't biased against the others method of treatment. Both Drs need be open minded. I believe you could beat the AN with either form of Tx, but immediately risk slightly more with surgery. If radiation didn't work, most excellent surgeons are not afraid of resecting around some scar tissue created by radiation.
  I trust they'll get it successfully whether Proton Beam, or surgery.

Rivergirl

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Re: 3 yr wait and watch is over time to act
« Reply #13 on: June 09, 2011, 06:37:21 pm »
Dave,
Sounds like the same thing happened to you as me, your only option is surgery.  I am 9 days post op from Mass General and have nary a complaint.  The ICU nurses were great, then the floor experience was as good.  I would only offer a bit of advice, get out of bed as much as you can and don't let a nurse or aide leave your side unless you have your call bell, chapstick and ice water, happened just once and I cried, otherwise it could not have gone smoother. They are so professional I felt so safe in their care.  Best of luck with your surgery!
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

DHJ

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Re: 3 yr wait and watch is over time to act
« Reply #14 on: July 08, 2011, 07:16:03 pm »
Surgury August 5 th with McKenna/Barker ar mass general. Will keep you posted. thank you for your support.  Peace Dave Jennings
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear