Another 1 year post-GK update

[mk]

I noticed there are quite a few people coming up for their one year post-treatment anniversaries. Since I am one of them, I thought I would post my update. Most here probably know my story, but for the newbies, I had GK in April 2008 for a rather large (2.5-3 cm depending on who reads it) right sided, mostly asymptomatic AN.

I now have gathered all the information (MRI and audiology reports) from my one year follow-up tests, visited the GK centre and here is the detailed update.

- AN is stable, there is a lot of darkening at the centre. There are no signs of edema. The radiologist report mentions a "more nodular appearing peripheral enhancement"; I asked the radiation oncologist but he said this is irrelevant. Anyone have any ideas what this might mean?  .

- Hearing is unchanged from prior to GK, actually the hearing threshold level has decreased a bit (meaning getting better), from 40 db to 30 db at the lowest frequency and 20 db at higher frequencies. Speech discrimination is 100%.

- Radiation oncologist made me do some tests: standing on tip toes, holding arms straight ahead with close and open eyes etc. I don't really know what these mean, obviously checking balance (again, anyone? - I have never done an "official" balance test). Overall he was very pleased by the MRI results and the absence of side-effects.

- Overall I consider myself very fortunate that up to now I have avoided swelling, fatigue and the other common symptoms (and that I have found this forum  ). The doctor said that for now we should continue on the 6 month MRI schedule, which works for me since I feel more confortable monitoring this thing closely.

Marianna

[EJTampa]

Hi Marianna,
 
Always good to hear a complete success story!
 
I have no idea what report meant by a more nodular appearing peripheral enhancement, but if the docs aren't worried, then you shouldn't be either.
 
Ernie

[Vivian B.]

Hi Marianna,

So glad to hear everything went well. I wouldn't worry about the comment that the Dr. made. It sounds more like the radiation did what it's suppose to do. It's sounds like the growth may be shrinking which is a good sign. Keep well.

Vivian

[Keeping Up]

Yeah Marianna

As a newbie, it is wonderful to hear updates with such positive outcomes. 

I think many here will know my references about Trish (Calimama) as I live very close to her - and meeting Trish and Cali has been very helpful.  My ENT works within the same practice as her ENT and same hospital network which gives me confidence about the decisions being made - even if the decisions are on a different scale due to the size of the tumors  (mine tiny - Trish's not so much!)

I also got a chance to meet Marianna when she was in Toronto for her follow-up consult earlier this week.  Again, should I need treatment (I am watch/wait and been told I may wait many years for any treatment due to size/location - and I am running strong with that theory), and should I choose  GK, I would be within the same practice as MK's GK treatment.

To meet and know others in a similar situation and see successful outcomes has been a tremendous amount of encouragement for me and helped with that nagging anxiety bug of 'what-if' scenarios. I am very comfortable that which ever path I choose, post-AN life can be absolutely awesome.

Ann

PS -don'tmind the lack ofspaces, one of the children took out the space bar- uuugh!

[Tumbleweed]

- Radiation oncologist made me do some tests: standing on tip toes, holding arms straight ahead with close and open eyes etc. I don't really know what these mean, obviously checking balance (again, anyone? - I have never done an "official" balance test). Overall he was very pleased by the MRI results and the absence of side-effects.

Marianna, as you surmised, these are simple balance tests. Sometimes patients aren't aware their balance has been compromised by their AN. These tests basically indicate if you're having problems. It gives your doctor a quick check -- without using any sophisticated and costly equipment or procedures -- of how your balance function is doing.

That's really terrific that you're not having any swelling, your speech threshold has improved, and you are largely asymptomatic. I'm very happy for you! Your update should be very encouraging to those in W+W who are considering having GK treatment. And considering that you're doing so well, it's also admirable that you still maintain a presence on this forum, dispensing knowledge, advice and consolation. Some people come here only for help. Thank you for helping others.

Best wishes,
TW

[sgerrard]

The radiologist report mentions a "more nodular appearing peripheral enhancement"; I asked the radiation oncologist but he said this is irrelevant. Anyone have any ideas what this might mean?  .

Since you have such a great 1 year report, and congratulations on that, I will make irrelevant remarks about this little tidbit. 

I interpret "peripheral enhancement" to mean the border of the tumor. Being "more nodular" would mean being "less smooth", suggesting that the tumor is starting to cave in or clump up. I have never heard of anyone being urged toward immediate treatment because their tumor is starting to become nodular. Of course I am just making it up, but I think an increase in nodularity is probably a good thing.

It actually is great to hear that even with a large-for-radiation AN, your GK treatment has worked out so well. Knock on wood, and I hope to hear more of the same next time.

Steve

[mk]

Thank you all for your comments.
Steve I like the interesting explanation  . I will take "caving in" and "clumping up" happily. The doctor said that it is important that the borders are very well defined. The centre shows necrosis first, because it receives the highest radiation dose (with GK twice as much as the borders).

Tumbleweed, thanks for your kind words. I have been hanging around offering whatever insights I can and trying to put all the research I have done to good use  . But I also find other peoples' posts deeply informative (I have learned so many things from your posts), not to say that this forum acts as a form of "group therapy" for me, and it is a source of new friends. We are in this for the long haul and we all know that one positive MRI is not the end of the story when dealing with an AN. Having support and as much knowledge as possible is important. I wish you all the best for your one year post-CK MRI, and hopefully the suspected hypoglossal tumor will remain unchanged forever, or better yet prove to be nothing at all.

Ann, as Trish's story shows, if someone can have major brain surgery and then go on and have a healthy pregnancy with twins only a few months afterwards, then certainly life does go back to normal post-AN treatment (albeit busier!). And you are right that it is conforting to know that you have access to a good network of physicians and hospitals who know their job well. Hopefully you will escape the need for treatment altogether 

Marianna

[suboo73]

Marianna, 

Great news for you, congratulations!
I am so happy your 1 year follow-up results are so positive.   

I look forward to your updates in future months - it really does help those of us in W & Wait mode.

Sincerely,
Sue

[ppearl214]

Marianna

how the heck did I miss this!?!?! Shame on me!

I am SOOOO thrilled for you and this update! Most impressive.. and you KNOW I send continued wellness wishes to you!  FAB news!

xo
Phyl

[Jim Scott]

Marianna ~

I saw your post a few days ago but ran out of time to respond.  Now I can reply.  Congratulations! 

Jim