What are the cons?

[Twindy]

What are the downsides to radiation?

[mindyandy]

I have to say the cons with radiation is the "what if its growing" everytime you feel a pain or if your ear gets a quick shot of tinnitus. Constant monitoring and the "omg is going to turn maligant". These are MY cons. Oh and since I have had trigeminal issues (never had any till after CK) I'm now or am wondering if this is from radiation. Which could happen. Its one of the "possible side effects".

[Jim Scott]

What are the downsides to radiation?

First of all, radiation is not a panacea, just not as traumatic as invasive skull surgery.

There are risks.  Some were mentioned by Mindy in her post (#1).  Fatigue is common, headaches happen fairly often and other unpleasant issues can arise, even months later, often due to swelling.  Most of these are temporary but have to be dealt with.  The annual MRI scans are tedious but after 5 years or so with no visible growth indicators, most doctors allow a much longer period to elapse between scans. The uncertainty can be unsettling but most AN patients that chose radiation treatment seem to deal with it fairly well.  Of course, the longer you go with no sign of re-growth, you become more sanguine about the possibility of the radiated tumor re-growing.   Finally, as Mindy pointed out, if you tend to be a bit anxious to begin with, the uncertainty of not knowing whether the AN is actually 'dying' can be stressful.  Of course re-growth is relatively rare but as these forums prove, it can and does happen.  However, the odds of the radiated AN turning malignant are infinitesimal and, in my view, not worth worrying about.  I underwent FSR on a de-bulked AN and never worried about it turning cancerous.  Coming up on 6 years post-radiation and it has not re-grown. 

Although there are 'cons' to choosing radiation treatment, thousands of AN patients have undergone this procedure in one of it's forms (CK,GK, FSR) and have come through it quite successfully.  Some of them post regularly on these forums.  Check them out.

Jim

[leapyrtwins]

Constant monitoring and the "omg is going to turn maligant".

Are you suggesting that radiation will make an AN malignant?  If so, you should know that this is just a myth - it's not a reality.

In my mind the "cons" of radiation were 1) having to wait to see if my tumor would stop growing and die - as opposed to it being removed through surgery; 2) having to possibly wait as long as 12-18 months after radiation to see what side-effects I would encounter - as opposed to surgery which would tell me right away; 3) wondering if every little twinge, headache, etc., post radiation meant that my tumor was growing.

Although I ultimately decided that radiation wasn't for me, as Jim said, lots of people choose radiation and it's the best solution for them.  AN treatment is a personal choice - one size doesn't fit all.



Jan

[mindyandy]

I'm not saying its going to turn maligant. Its just something that was in the back of my mind. I know the odds are not likely.

[PaulW]

One Con of radiation is how your friends and colleagues perceive your problems.

If you have surgery it fits the classic "illness model" You get sick, you get operated on, you get lots of sympathy and help for a few months, and then you are "fixed". And you even have the bragging rights and scar to prove it.

With Radiation, you get sick, you get radiation, you have no visible signs of any sufferring, and two months later your symptoms get worse, just when everybodies help and sympathy is running a little thin. The fact there is no scar, no facial weakness, no funky haircut, no visit to intensive care.  Radiation rates poorly on the "Sympathy" scale. 
 
The perception is that you were "fixed" the day you had radiation.
The reality is that you will be "fixed" about 2 years after the procedure was done.

 

[rupert]

  "Constant" monitoring".  As Jim said, tedious maybe . Not constant
   There have been no downsides to my particular GK treatment thus far.  Take note of the many that have had radio treatments with no, or minor temporary issues.  Find a good team, and if there are complications they can usually be resolved.  I know complications do  happened to a few and re-growth is a possibility after surgery or after radiation,  however is rare.
  This forum is a great resource for sure,  but please remember most people are here because they have issues and/or complications of some type and are looking for answers and help.  Shared knowledge about these issues is very helpful to most,  but many people that have had treatments for AN's never visit these forums,  or if they do and don't have issues they simply move on.  I always try and keep this in perspective.

[Richard_T]

Twindy,

I am no physician and offer the following as a personal observation or opinion.  Also, as rupert (and my mother-in-law) suggests, most people post problems with treatment, not successes (though, of course, some do).  So, temper your view of the amount and type of negative outcomes.

Also, as with many of the posts here, it is accurate to suggest that there are some downsides to both radiation and micro-surgery.  In the end, it is impossible or inappropriate at this point in medical advances to say which methods are objectively better.  For instance, some people have had re-growth or new growth from microsurgery and radiation, even if the likelihood is low.  We are all familiar with many reports that microsurgery is more likely to further damage/destroy the acoustic nerve and worsen or damage hearing and, possibly, to cause damage (less often the case) to other nerves, e.g. vestibular (balance), facial or trigeminal.  Radiation does not remove the original tumor and has the separate very low risk of causing the tumor to become cancerous.  If the tumor has proclivities to continue growing (something you will not know until it happens), surgically removing all of it (also not guaranteed because it may be partially removed as a strategy to avoid risking other nerve damage and then re-grow) would prevent re-growth.  If the tumor had no tendency to continue to grow after radiation, then radition would completely do the trick. 

As I mentioned in my serial posts for my CK treatment, Dr. Gibbs at Stanford informed me that her colleague saw (about a month prior) what was believed to be their first cancerous tumor after CK treatment.  I had previously been informed that the odds were placed at 1 in 10,000 or 20,000 and would now, possibly, have to be reconsidered.  However, I went through the process anyway and was unphased.  After all, everyone knew it was possible, but the statistics still put it in the stratosphere. 

I'm sure there are many more comparisons, but I listed some that were pertinent to my decisions beyond the obvious (intially trying to avoid invasive skull surgery).  Of course, you will have to decide which approach best suits your tastes.

Good luck with your decision.

Richard

[leapyrtwins]

One Con of radiation is how your friends and colleagues perceive your problems.

If you have surgery it fits the classic "illness model" You get sick, you get operated on, you get lots of sympathy and help for a few months, and then you are "fixed". And you even have the bragging rights and scar to prove it.

As one who had surgery, I have to respectfully disagree with this.

I had a pretty good outcome - some initial nausea, balance issues, double-vision; nothing that was very visible to others after the first week or two.  My biggest issue - being SSD - wasn't visible either and I struggled with it for a long time before I got my BAHA.

I returned to work part-time 2 weeks post op and most of my colleagues were under the impression that my surgery was "minor" because to them I looked fine.  They didn't know I was struggling with fatigue, adapting to my hearing loss, etc.  In their minds I was back to being "myself" in record time.  They also didn't think twice about my inability to hear on my left side because nothing was "visible" to them.  I'm still amazed how many times I tried to explain this situation to them 

I do have a scar - quite an impression one  - but it was covered by my hair approximately 10 days post op so it wasn't the sympathetic "red flag" that people might think it is.

So, surgery patients can be "invisible" to others also.  I think it's something that radiation and surgery patients alike run into.

Jan

[windy]

I have to say the cons with radiation is the "what if its growing" everytime you feel a pain or if your ear gets a quick shot of tinnitus. Constant monitoring and the "omg is going to turn maligant". These are MY cons. Oh and since I have had trigeminal issues (never had any till after CK) I'm now or am wondering if this is from radiation. Which could happen. Its one of the "possible side effects".

Ditto Mindy! You have covered what I was thinking! Also, you have ALL made some great points here!

The "what if's" can be very wearing if your tumor does not shrink and the years press onward. I feel like when I have pain in various places that I did not have prior to GK, I wonder if it is from growth issues or radiation damage. Also, like Mindy, I wonder if it is going to become malignant in the future. Being in a small segment of the enlargement patients post GK, I wonder if I will be in any other small segments in the regard to other issues. With that said, if my tumor had shrunk, I would be in a much better place with symptoms, etc.... I would stand the ear pain, headaches, and brain zaps, without worrying. I feel like I had already worried about potential issues prior to radiation and am worrying still.

[mindyandy]

I agree Windy. Are you having any issues now?

[windy]

I agree Windy. Are you having any issues now?

I seem to keep some small amount of issues a lot of the time. Whether it is ear pain, head pain, something along the lines of what I call "brain zaps", or just fatigue in my head by the end of the day. I will occasionally have pain in my right cheek. I almost always feel much better in the morning when I am refreshed and have had rest. None of the issues seem major, but do worry me at times just because I used to not have them. I will say as a person with autoimmune issues, my body does not work as well as someone who is totally healthy, so that could account for some of my issues.

[cburley1]

I am exactly like you Windy...issues of one kind or more, every single day..and I feel better in the morning, but as the day goes on I just feel worse, MRI in July showed 1mm shrinkage on one side, starting to have more issues or the ones I had got worse, MRI from last Fri shows 2 mm growth, but don't know if it is true growth or mri cuts, swelling, but have to have another MRI in 6 months instead of a year...and I also am starting to have Trigeminal like issues...and I also have autoimmune issues, thyroid & fibromyalgia...so I understand what you are saying there....

[Ned]

Someone mentioned that most of the people that don't have any residual problems move on and don't visit this site.  My FSR was in 2003, stayed on this site for 2 years until my side effects got better.  I had totally forgotten about decacrap, glad I don't have to do that.  I am back on the site because of some current severe balance problems the last 3 days but this morning they are much better.  Good luck and radiation isn't without its own problems, the problem in my treatment was that my doctors never discussed the side effects, every time I would come in to discuss post treatment problems they were somewhat dismissive after awhile.

[cburley1]

You know, I have noticed that a lot of people who had radiation get the standard pat answer about symptoms not being related to radiation from their doctors....but did you notice how many of us are on here that are going through a lot of the same or similar symptoms.....I don't think they are telling the whole story....I don't believe it is as black & white as they like to make it, for whatever reason....