Author Topic: It Grew Back  (Read 1958 times)

MissMolly

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It Grew Back
« on: February 01, 2019, 11:58:53 am »
Hello.  I am 10 years post surgery.  I was doing great until about the end of August when I started sensing some of those old familiar symptoms...increased tinnitus, hearing decline, "carsick" feeling.  Just had an MRI which confirmed my suspicion that the tumor had returned.  It did return and is the same size as it was at surgery.  Feeling pretty downhearted and frustrated.  Not sure I can endure another surgery.  Big Sad Face.
M

Miss Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

gbkim86

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Re: It Grew Back
« Reply #1 on: February 02, 2019, 05:45:05 pm »
I'm so sorry to hear that your tumor has regrown. Have you had follow-up MRI after surgery? I wonder whether you had small peice of tumor left after surgery, or you completely removed the tumor.

GB
06/23/2018 - Diagnosed left, intracanalicular, 12.2 x 7.5 x 6.5
12/18/2018 - GTR by RS mircosurgery (Redwood City, CA)

notaclone13

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Re: It Grew Back
« Reply #2 on: February 03, 2019, 09:31:12 am »
So sorry to hear this Miss Molly. Have you gotten any opinions regarding the best course of action?

Kathleen_Mc

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Re: It Grew Back
« Reply #3 on: February 07, 2019, 03:17:56 am »
Sorry to "hear" this.
I too had regrowth, it was found about 8 years after the original surgery and I later had it surgically removed. I was offered gamma knife instead of surgery but declined ( personal choice). Is the regrowth small enough for Gamma knife or some such procedure ?
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

KeepSmiling

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Re: It Grew Back
« Reply #4 on: March 01, 2019, 01:01:02 pm »
I am not a doctor but I would like to suggest you research the latest information about Proton Therapy. So far, we are pleased with the outcome after 6 week proton radiation treatment in 2013. Last MRI showed tumor is now reduced about 50% in size (see profile description of KeepSmiling).

Condition of patient:  Tinnitus was a complaint in 2009 and reduced hearing in the AN ear. Doctor failed to order MRI but instead focused on a CPAP sleep study. Patient successfully uses CPA machine for sleep apnea. In Nov 2012 there was complete deafness in the AN ear. To reiterate- complete deafness in AN ear prior to the Proton therapy treatment. At certain times there is still some tinnitus. The use of a special hearing aid that picks up sound from your deaf side and transmits it to the better ear has been helpful.  Patient has full time scientific career with increasing responsibilities and worked steadily during 6 week fractionated Proton radiation treatment at  Massachusetts General Hospital. Is and was physically active with no balance issues and no facial control issues, before, during, or after treatment. Hearing in good ear is sensitive and wearing earplugs when in a loud environment has helped.

The following  is what seems to be a good "watered down" explanation of Proton therapy:
Radiation treatments damage the DNA of cancerous cells to destroy tumors.
The difference between traditional radiation and proton therapy is in how the radiation is delivered.
Traditional therapy irradiates tumors with X-ray waves, which are beams of photons, and all tissue along the beams’ paths get a similar dose of radiation.
Proton therapy uses beams of protons, charged subatomic particles that can be controlled with magnets. A small amount of radiation is deposited on the way into the body, most goes directly into the tumor and none passes through the other side.
That means, for instance, that radiation aimed at a tumor in one side of the brain wouldn’t harm the healthy side. And a beam aimed at a spinal tumor wouldn’t reach the heart or lungs behind it.

You may want to research this and it may be helpful. Be careful and be thorough as you get involved in your research. Consider the experience and educational background of the team of doctors and those physicists who maintain the equipment. The dosage also matters. Some proton treatment centers have more experience with head and neck . Some proton therapy centers will soon be upgrading to the newest technology. There have been advances in the technology since 2013.Ask questions about range of uncertainty.

A possible starting point for  research:
1. https://theijpt.org/doi/pdf/10.14338/IJPT-14-00014.1

2. https://www.massgeneral.org/neurology/news/newsarticle.aspx?id=5393

3. https://www.proton-therapy.org

Really hoping you can find a solution to this tumor regrowth problem. Wishing you well!
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

MissMolly

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Re: It Grew Back
« Reply #5 on: March 14, 2019, 09:16:49 am »
I met with Dr. Loeffler at the Proton Beam clinic.  He stated because of my symptoms (vertigo is bad this time around) that he didn't feel I was a candidate.  Following the Proton Beam, the tumor may experience some swelling which will increase the symptoms.  Looking now at non surgical management options while I wait a year for my next MRI. 
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

jami

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Re: It Grew Back
« Reply #6 on: April 04, 2019, 10:56:05 am »
HI MissMolly,

Lots of warm thoughts of support. Sorry that you are still going through this.

My surgery was august, and the 6 month MRI showed aggressive regrowth BUT its treatable by Cyber Knife (expect it to come in a few weeks).

I realized that I am not as 'ok' as I thought, as it continues. I had been holding on to getting back to 'before', and experiencing many micro-frustrations when its not getting back to before. Its also tough to know who to talk to about every little bit of wobbly walking, facial numbness and more, feeling that I need to have gotten over it by now. If you want to DM to talk about it, i am happy to listen.

Jami
 
Jami
-----
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

ColleenS

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Re: It Grew Back
« Reply #7 on: April 04, 2019, 02:51:08 pm »
Sorry to read about the regrowth Miss Molly. Mine also grew back after surgical removal in just 15 months - almost to the original size. I had radiation done five months ago and am dealing with pain and swelling now that includes numbness and facial weakness and major eye issues. I know these symptoms will go away as the tumor dies and shrinks, but in the meantime it is hell.

I am glad you are on W&W for a year. That will give you time to see if the beast is growing.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

 


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