Wait n scan vs radiotherapy to reduce AN volume article (2023)

[mwatto]

Read this today - thought I would share. https://jamanetwork.com/journals/jama/fullarticle/2807745?resultClick=1

[ESH]

Thank you, Michelle. It's a frustrating article. The finding that tumor size was smaller after 4 years with radiation did not surprise me, but was not what I was really interested in. I wish I could find better information on the hearing, facial nerve, and balance  outcomes between radiation and watch-and-wait over time. There is very, very little on that.

[Mark F.]

I know you are not saying anything about surgery as an option, but remember that the doctors have to tell you worst case scenario.  The potential advantages are also great.   I had surgery less than 3 months ago and I am so much better than before.   Just last week started running again and training for a 5k.   Before surgery I couldn't walk straight.   I was more worried about the potential side effects from radiation than I was from surgery.   And the number of stories of cyberknife either not working or only being a temporary solution and the tumor growing again. 

[mwatto]

Yes you are right and I think if I was younger that would have been better. At least its out then. Radiotherapy is no guarantee it wont regrow- even after ten years its unpredictable. Where mine was located was tricky but doable. I rushed into CK because I was scared and uninformed really. Had no support and the AN org in Australia was just not as helpul (they had very old flyer and no resources as this group has access to).

[Mark F.]

By the way, I am not exactly young either.   I just realized that I never actually shared that information.  But I am 57.  I have just always been on the healthy side other than the tumor.   So getting back to running again is a bit more exciting to me than it probably would be to a 20 year old.   And the recovery time has been much quicker than I expected based on what I was told.

[mwatto]

Yes I often wish I had been braver at the time and had the surgery -my radiation specialist told me that in my case be about 14 hours and very risky re the location. So I had the CK as he said I was an ideal candidate. However I saw a neurosurgeon here a few years ago and he said that was simply not true. That the op would have been about 4 hours and relatively easy to do. I guess I was so traumatised I just went with the easier option. My mum had recently died after a heart op and that didnt help.

[Mark F.]

mwatto:  My surgery was 7.5 hours long.   They told me 7 hours but I am guessing the extra half hour was because they actually lost a needle in my head for a bit and had to get an X-ray done during the surgery to locate it.   I was never told this bit of information by my surgeon, but that's the upside of the MyChart app.   It lists literally everything.  I was not upset that it was lost, because it's not like they didn't realize it was missing, I mean things happen, I am just glad that they kept track of everything and realized it was missing and immediately got the equipment in there to locate and remove it.  And I would be lying if I said a 7 hour surgery on my head wasn't scary.   There was a part of me that was worried I wouldn't wake up or I would wake up somehow damaged.   But in the end I knew it was the best choice for me.  I wasn't so sure about that when I woke up violently ill, the first two days are absolutely awful, but after the second day it wasn't so bad and I could tell things were going to be better, and I made the right decision for me.   I had gone to two different surgeons for opinions, one of them did suggest cyberknife, but I was more afraid of that than surgery because I have two friends in the medical field that told me multiple times that I didn't want anything to do with radiation of any kind unless it was a last resort. 

[DanFouratt]

Michele, thank you for the article, you always post interesting article.  Though I will admit this was a little difficult to completely understand the outcome.

I was 62 when I decided on CK for my tumor.  When I had my treatment I was under the belief that facial nerve damage was very low approaching zero.  Some of the recent webinars states this is a little higher.  I had no balance issues, however hearing loss and tinnitus we present.  I put together a matrix of the information gathered and continue to update it.  If you want this reach out to me (Dan4att@gmail.com).

I am happy with the decision I made for me.  I am not saying it is right for everyone, we all need to do what is best for us.  ANs are more frustrating then other medical issues as it is not as easy to make a decision. 

Good Luck on your decision journey.

[mwatto]

Hi Dan -I would love to share info with you. I am happy I chose CK over all and at the moment I have no issues (I had some pretty bad deep ear pain but medical cannabis sorted that out mostly). I will def email you thanks!