Author Topic: How long does radiation last?  (Read 7456 times)

chanc93

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How long does radiation last?
« on: October 07, 2016, 10:47:03 pm »
Hey guys,

I'm 23 years old and I was diagnosed with a Facial Nerve Schwannoma. Luckily we caught it early so all I have is hearing loss and no facial loss except for a little bit of twitching every days in the left corner of my mouse.

I spoke with Dr. Wilkinson and Dr. Lekovic who is a neurosurgeon from the House clinic. Dr. Wilkinson suggests radiation so the tumor will stop growing. However, when I spoke to Dr. Lekovic he said radiation can guarantee me at least 5-10 years of the tumor not growing, but he made it sound like radiation can wear off over time and the tumor can start to grow again. Do you guys know how long radiation lasts and prevents the tumor from growing? Or does it vary from person to person and how their body reacts to it?

Also, I spoke with Dr. Friedman at USC and when I asked him about radiation he said he did NOT want to radiate me because I'm so young and I can develop cancer later on in my life because I'm so young right now. Dr. Friedman wants me to wait until I have facial paralysis symptoms and then perform decompression surgery on me. I'm not sure what he wants to do after decompression but that was his opinion for me. So I was also hoping to get some input from you guys about what the doctors have said.

Thank you very much, I really appreciate it.

Tumbleweed

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Re: How long does radiation last?
« Reply #1 on: October 10, 2016, 11:53:22 am »

Hi, Chanc93:

Radiation does not "wear off." However, any treatment -- radiation or microsurgery -- has the potential to leave one or more cells of the tumor alive, and that can result in regrowth (typically years after the treatment was performed). Studies have shown that the rate of tumor recurrence between microsurgery and radiation are virtually the same (roughly 2%) when performed by the most experienced surgeons. If you troll this forum's archives, you'll find several examples of both radiation and surgery recipients who have had their tumor resume growth years after treatment, requiring a new round of radiation or surgery.

There is only one confirmed example I've seen in medical literature of a person developing a cancerous tumor in the same location as they were irradiated years prior. On that basis, your risk of developing cancer from radiation treatments is virtually nil. However, radiotherapy is new enough (nevertheless used for many decades) that I don't believe there are studies covering a 70-year span of research; as you would be 93 years old 70 years from now, it's theoretically possible that you could develop a cancer decades from now that research could not have predicted due to its relatively short followup history. One other thing to consider is that radiation doses are much lower now than they were during the early years of its use, and fractionating (splitting a single dose up into smaller, more easily tolerated doses) also theoretically makes radiation somewhat safer. Both of those factors theoretically reduce your risk of cancer developing due to receiving radiotherapy.

From your post, it sounds like you're aware that decompression (partial removal of the tumor) won't stop the tumor from growing, and further treatment would be required to accomplish that. I suggest you ask Dr. Friedman what additional treatment he would advise.

Personally, I would not wait until you develop facial paralysis to get treatment (this is just my inexpert opinion). That's what treatment is meant to prevent, and there's no guarantee that treatment will reverse those symptoms. Even should you choose to have microsurgery to (hopefully) totally remove the tumor, and even if that surgery doesn't nick your facial nerve, the facial nerve's function can be negatively impacted from the trauma of surgery (scraping the tumor off the nerve).

It's a lot to think about. We all commiserate with your predicament, having had to make the difficult choice ourselves as to what kind of treatment we will have and when. Ask more questions of your doctors to get as clear as you can about your options and their predicted chance of success before you decide. Good luck!

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Blw

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Re: How long does radiation last?
« Reply #2 on: October 10, 2016, 01:35:24 pm »
You are in a pretty tough spot. They typically do not like to radiate younger people. Not so much because of a cancer fear, but because there probably is very little data on 40-50 year post acoustic neuroma radiation. Unfortunately, because yours involves the facial nerve, there is a huge quality of life issue if that nerve is damaged, hiwhc likely would happen if they try to remove all of it. I think what you should do is to get as many opinions as you can, and have your doctor get you a consultation with one or more radiation ocologists. You don't have cancer, but those doctors will have the best grasp of the long term effects of radiation and the possibility of it causing cancer. It is miniscule for 10 years. As far as regrowth, you could deal with that when it happens. But keep in mind, if you got ten years, that is a lifetime in biomedical research. There will be new methods of treating these in ten years. In 20 years, who knows. 

Citiview

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Re: How long does radiation last?
« Reply #3 on: October 12, 2016, 02:10:45 pm »
Blw and everyone else

This was on the ANA Facebook page. It's about genomic mapping of the schwann cells.
Like you said, who knows what treatments might be available in the future.

This Dr. Zadeh is a genius.

http://www.uhn.ca/corporate/News/PressReleases/Pages/UHN_research_team_maps_genomic_landscape_of_schwannoma_tumours.aspx#.V_5NwGe2drI.facebook
« Last Edit: October 12, 2016, 02:57:16 pm by Citiview »

Blw

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Re: How long does radiation last?
« Reply #4 on: October 12, 2016, 08:14:14 pm »
Blw and everyone else

This was on the ANA Facebook page. It's about genomic mapping of the schwann cells.
Like you said, who knows what treatments might be available in the future.

This Dr. Zadeh is a genius.

http://www.uhn.ca/corporate/News/PressReleases/Pages/UHN_research_team_maps_genomic_landscape_of_schwannoma_tumours.aspx#.V_5NwGe2drI.facebook

 ;D

Tumbleweed

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Re: How long does radiation last?
« Reply #5 on: October 17, 2016, 01:48:40 pm »
Thanks, Citiview, for posting the link to this encouraging story!

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Kathleen_Mc

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Re: How long does radiation last?
« Reply #6 on: October 18, 2016, 12:28:26 am »
chanc93
I don't think it's a good idea to wait until you have facial issues.....it's better to have this dealt with before that so that you have little to no chance of facial nerve damage......just my two cents (my tumor was found at age 23.....too far gone to save the facial nerve). Facial nerve damage brings with it all kinds of other issue's, beyond they way you look, that last a life time.....eye issues, swallowing, teeth issue's (just to name a few)......just my two cents
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)

mcrue

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Re: How long does radiation last?
« Reply #7 on: October 18, 2016, 07:16:03 pm »
Blw and everyone else

This was on the ANA Facebook page. It's about genomic mapping of the schwann cells.
Like you said, who knows what treatments might be available in the future.

This Dr. Zadeh is a genius.

http://www.uhn.ca/corporate/News/PressReleases/Pages/UHN_research_team_maps_genomic_landscape_of_schwannoma_tumours.aspx#.V_5NwGe2drI.facebook

This is very promising. What exactly does this mean in layman's terms? Will patients some day be able to simply take a pill to kill their tumor rather than have surgery?
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

LakeErie

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Re: How long does radiation last?
« Reply #8 on: October 19, 2016, 07:01:40 am »
Citiview, thanks for that link. Finding a specific gene abnormality common to schwannomas is extraordinary. Making that abnormality subject to gene editing techniques like CRIPERS, TALENS and
ZFN's ( zinc finger nucleases ) would be interesting to say the least. Gene editing means the therapeutic insertion or removal of specific genes. An example is a current clinical trial using ZFN's ( Sangamo Biosciences Corp ) to insert the missing gene whose absence causes Hemophilia B.
« Last Edit: October 19, 2016, 07:03:44 am by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Blw

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Re: How long does radiation last?
« Reply #9 on: October 19, 2016, 02:01:50 pm »
I don't think this can be fixed by gene editing because it is not every gene in the body, it is located within the tumor. The mutant protein, a fusion of two genes, causes the tumor to grow. I think a more realistic route is to first recover the protein, confirm that all tumors have the same protein, which they may not, and then develop a therapeutic towards that protein, or perhaps an antibody to the tumor. However, because it originates on the schwann cells, there would be concern that if something goes wrong, any nerve could be attacked.

mcrue

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Re: How long does radiation last?
« Reply #10 on: October 20, 2016, 12:32:20 am »
So, what exactly does this mean in layman's terms?
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Blw

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Re: How long does radiation last?
« Reply #11 on: October 22, 2016, 05:40:57 pm »
Two genes were joined into a single gene to make a hybrid protein. That's what causes is or associated with the tumor. The mechanism seems to be by genomic rearrangement. If the hybrid protein is in every tumor (everyone has the same thing), then they could target that protein and develop a drug to block it's function, and prevent the tumor from growing. If the protein sticks out onto the cell, because it is unique to tumor cells, they could target it and kill every cell that expresses it--the whole tumor. Many years away.

mcrue

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Re: How long does radiation last?
« Reply #12 on: October 23, 2016, 01:12:41 am »
they could target that protein and develop a drug to block it's function, and prevent the tumor from growing. Many years away.

Thank you Blw.

So many if's.....and then it's many years away if it does work. But it's a start.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan