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Author Topic: Regrowth  (Read 8531 times)

FlowerPower

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  • Posts: 1
Regrowth
« on: November 21, 2019, 08:14:25 pm »
Hi All,
It’s been 10 years since I visited this site.  I had Cyberknife treatment 10 years ago at Sanford. Just had a follow up MRI which showed regrowth.   Does anyone have experience with surgery after radiation failed? I would appreciate any comments on doctors and results. 

Nervous going thru this again.
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Patti

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  • Posts: 361
Re: Regrowth
« Reply #1 on: November 23, 2019, 08:00:54 am »
What was the first size and what is the regrowth size? I have had regrowth 15 years after a tough surgery. I had the regrowth treated with SRS 4-5 years ago and hope it never comes back! Sorry for you. It must cause you so much anxiety.
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4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

james e

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  • Posts: 671
  • 75years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: Regrowth
« Reply #2 on: November 23, 2019, 12:50:07 pm »
I had translab surgery 10 years ago so I am SSD right side. My MRI this past week found no growth on my right side, but found  a new AN on my left side. Have an appointment Wednesday to discuss treatment. I am scared to death about losing my remaining ear and vestibular nerve.

Wish I could help with your problem however I can share your anxiety. Do you have an appointment with your doc yet?
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chloes mema

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  • Posts: 414
  • Life is a special occasion.
Re: Regrowth
« Reply #3 on: December 27, 2019, 01:00:14 pm »
I had CK 8 years ago and just found out that the tumor has been growing again.  My doctor started talking surgery but I stopped him in mid-sentence saying I would not have surgery so I've been referred back to my oncologist that did the CK prior.  I also mentioned that I would rather just go back to watch and wait but my doctor said "...it's growing, it's not going to shrink on it's own, stop growing, or go away on it's own..." so you might as well take care of it now. 

Sorry I can't help you with recommendations but I certainly can sympathize with your anxiety.  I'm sure we both thought years ago that this was a done deal!

 Wishing you the best results possible.
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Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

jsteph

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  • Posts: 15
Re: Regrowth
« Reply #4 on: January 16, 2020, 04:01:46 pm »
I don’t quite know what to offer for these disappointing stories of having to repeatedly deal with ANs and treatment. In 4 days I go to have GK for my AN after w/w for 5 years. Though life has been good since AN, it has been a challenge at times.

Just want you to know that you have other supporters, brothers, sisters who wish and pray for you.
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Rt. side AN diagnosis 2-2015: 15 x 10 x 10 mm
MRI 9-2015:  16 x 11 x 11 mm
MRI 11-2016: 19 x 13 x 13 mm
MRI 4-2018: 19 x 12 x 14
Watching & Waiting

jami

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  • Posts: 131
Re: Regrowth
« Reply #5 on: January 23, 2020, 12:47:33 pm »
I want to echo jsteph's comment - lots of support for all of you.

I had regrowth after surgery, and did CK. Lucky it was only 6 months after, so i was still over-identifying as an AN Survivor (it can be part of every thought all day) and didnt have to RESTART the journey. That has to be tough. Be strong! Breathe Deep! And let your Drs know about the anxiety, advocate for yourselves.

Jami
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Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm
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