Author Topic: Narrowing things down  (Read 3551 times)

KJ

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Narrowing things down
« on: October 15, 2009, 05:17:39 pm »
Hi Everyone,  I'm back from vacation now and have to start thinking about this bean in my head again.  I have been reading all over this site at everyone's experiences before and after each type of treatment.  I am so glad this is here and you all are so willing to share your experiences. As I stated before, I have already been to see Drs. Pensak and Theodosopoulos at the Mayfield Clinic at UC Neuroscience Institiute here in Cincinnati regarding surgery.  Next Tuesday I go to see Dr. Breneman at Precision Radiotherapy, also part of the Mayfield Clinic group, again here in the Cincy area regarding radiation.  I have to say, I am leaning more toward radiation than surgery, although you all make both sound like so much fun!  :-\  I guess it rests a lot on what they tell me Tuesday.  Is it possible to be rejected for radiation because of tumor size (10mm) or age (58)?  For me, radiation would be much more convenient with regards to work and quality of life, and the fact that I hope to preserve my existing hearing. I will post again after Tuesday and update you all.

Kate
58yr, married, no children.  Recently diagnosed with 10mm AN on left side.  70% hearing loss, tinnitus, some balance problems.  Previous mastoid eardrum replacements in both ears resulting in 60% loss on right side.  Currently considering treatment options.

leapyrtwins

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Re: Narrowing things down
« Reply #1 on: October 15, 2009, 08:08:17 pm »
Kate -

with an AN of 10 mm, you are well within the size range for radiation and I don't believe your age is a factor.

I met Dr. Pensak at the ANA Symposium in August and he struck me as a wonderful doctor who really knows his stuff.

I'm not saying that the other docs you mention don't - just that I had a great impression of Dr. Pensak.

I can't say if radiation is fun or not, but I can say that while surgery wasn't necessarily fun, it was the best choice for me and I'd do it again in a heartbeat. 

Treatment decisions are tough - sometimes the toughest part of the entire AN Journey - but you'll make the choice that is best for you.

Go with your gut.

Good luck with your appointment,

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

KJ

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Re: Narrowing things down
« Reply #2 on: October 16, 2009, 04:02:32 am »
Jan, thanks for your input.  I liked Dr. Pensak also and if I went with surgery, I'm sure he would do an excellent job. I just feel a lot more comfortable with non-invasive treatment. That may change after my Tuesday visit.  We'll see.

Kate
58yr, married, no children.  Recently diagnosed with 10mm AN on left side.  70% hearing loss, tinnitus, some balance problems.  Previous mastoid eardrum replacements in both ears resulting in 60% loss on right side.  Currently considering treatment options.

leapyrtwins

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Re: Narrowing things down
« Reply #3 on: October 16, 2009, 05:50:00 am »
Totally understand the non-invasive part.

Radiation is a wonderful option for those who choose it - it might be a wonderful option for you, too.

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

sgerrard

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Re: Narrowing things down
« Reply #4 on: October 16, 2009, 09:38:39 am »
HI Kate,

58 is not too young to have radiation. :)

10 mm is definitely a small AN. 25-30 mm is more like the size limit.

Hearing preservation is less successful when you have already lost a lot, but it is still possible. What kind of radiation treatment would it be?

I am very happy with my decision to zap my 8 m AN at the age of 53, and to keep some hearing on the AN side. I had Cyberknife at Stanford in Sep 2007.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

KJ

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Re: Narrowing things down
« Reply #5 on: October 16, 2009, 12:52:00 pm »
Hi Steve, I don't know what kind of radiation until I go for my visit on Tuesday.  So far I've only been researching here and elsewhere on the internet.  Tuesday will be my first formal discussion with a radiation doctor.  Thanks for sharing your story. I'll let you all know what I find out.

Kate
58yr, married, no children.  Recently diagnosed with 10mm AN on left side.  70% hearing loss, tinnitus, some balance problems.  Previous mastoid eardrum replacements in both ears resulting in 60% loss on right side.  Currently considering treatment options.

Jim Scott

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Re: Narrowing things down
« Reply #6 on: October 16, 2009, 01:44:34 pm »
Kate ~

These consultations are intended to offer the AN patient a wider view of their situation (size, placement) and the treatment options open to them.  I would have went with radiation in a heartbeat but my AN (upon discovery via MRI) was far too large (4.5 cm).  After having the tumor debulked (down to 2.5 cm), I did undergo irradiation, with no complications.  While being briefed on the  inherent risks with surgery and later, radiation (FSR), my age (63 at the time) was never mentioned.  Probably because I was in excellent health and eager to proceed.  It all ended quite well. 

I trust your upcoming consultation will be informative and help you navigate the turbulent waters of AN treatment decision-making.  We'll help whenever we can.  We'll also look forward to learning the results of your consultation with Dr. Breneman.

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.

Sue

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Re: Narrowing things down
« Reply #7 on: October 16, 2009, 01:51:40 pm »
My age was more of a consideration to do the radiation than the more riskier surgical procedure..  It's more typical of doctors to want to do surgery on the younger patients and radiation on the older patients.  That is not to say that younger patients can't do radiation. 

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


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