How much help is needed?

[joanna_an]

Hi all,

I was leaning towards radiation but given my age and other aspects the radiation oncologist said that I should go with the surgery. He said that even if he gets money from treating me he still doesn't want to do it and that surgery it's best for me, even facial nerve preservation wise.. As surgery after radiation is likely to cause facial paralysis and the surgeons are highly regarded.

I was wondering since I am far away from my family how much help do I need? I am thinking to order groceries online and have them delivered. Surely I can wash myself and cook a bit if needed? I won't leave the hospital until I feel fit enough. I have to add that I am a very fit 31 years old. I train 4 times a week, gym plus swimming.. I swim  800 meters every time when I go to the pool.. Even with my tumor at the moment I don't have any balance problems.

What do you think? Is it necessary to hire a carer or get my brother to fly down here (Australia)? I live with 9 other people.. I live in a mansion I am not alone.
My AN is on the medium low range.. 18 x 16 x 13 mm

Please let me know what you think.

Joanna.

[rupert]

Being physically fit should help a lot in your recovery.  One never really knows how much help they will need, because everyone is different and outcomes can vary all over the board.  I would think you would want someone there helping you for at least a couple weeks.  You would know by then if you could care for yourself or need to make longer term arrangements.  six weeks to six months sometimes for recovery.

I know  the surgeons are highly regarded, but there are not any more complications on treating AN's after radiation than before radiation.  Some are easier to remove than others regardless, and I would personally not base my decision on that .  There is also just as much chance of facial paralysis with surgery. It doesn't matter if it's been radiated or not.  Lastly, I don't think age should be a consideration of treatment .   With the size of your AN being small to medium you should have all options.  I would seek out experienced second opinions. Then decide.  Good luck in your treatment.  We've all been there, and it's a hard road to feeling you made the right decision.

[joanna_an]

Hi Rupert,

I'll ask my radiation oncologist for a web link to the study that he told me about. He said that at the House Clinic in LA surgery after radiation resulted in 50% cases of facial paralysis and that patients looked as if they had a stroke..
In here http://www.ncbi.nlm.nih.gov/pubmed/15630374 I found that:
"Surgical removal was found to be significantly more difficult after radiation therapy because of increased fibrosis and adhesion to adjacent nervous structures, particularly at the porus acousticus. Excessive scarring hindered identification of the facial nerve and added uncertainty as to the completeness of tumor removal. Decompression of the internal auditory canal (IAC) dura and resection of neoplasm in the IAC before cerebellopontine angle dissection was required for facial nerve identification. Operative time was significantly longer for irradiated cases, and facial nerve outcomes tended to be poorer, particularly when facial nerve dysfunction prompted the salvage procedure."

[robinb]

Interesting study referenced by Joanna-

We identified nine patients with acoustic neuromas that required surgical resection after radiation therapy

Not sure how representative this is with only 9 patients in the study. Plus its from 2005, nearly nine years ago.

Here's another;

http://www.ncbi.nlm.nih.gov/pubmed/18810213

I'm sure we could drive ourselves and each other nuts w/all this. As I have said repeatedly, everyone needs to make the decision best for them at that moment in time. If I wind up ever needing surgery down the road, I know in choosing Gamma Knife initially, I made the best treatment choices for me.

[Islandgirl]

I agree with previous posts about this.  Some of these reports and statistics are well out of date and the more you read the more confusing it becomes.  You just have to decide for yourself. I think an old study of 9 people is statistically flawed and pretty useless really.  Only identifying 9 people who required surgical resection after radiation therapy sounds pretty good to me.  9 out of how many ?. Now that would be interesting. 

[joanna_an]

True, 9 patients are not many.. But depends on how old they were... Maybe some didn't go for surgery even if the radiation did not work.
My radiation oncologist followed his patients for over 12 years... In 5 years the tumor control dropped to 95.5% and in 10 years it dropped to 93.6%.. He's using a Linac machine. Considering that I am only 31 years old... and that my tumor is compressing the brain stem, so if it gets any bigger (swelling after radiation) I might be in trouble... To be honest I don't like either of these options.. And is not one that scares me more than the other!

[mk]

I'll ask my radiation oncologist for a web link to the study that he told me about. He said that at the House Clinic in LA surgery after radiation resulted in 50% cases of facial paralysis and that patients looked as if they had a stroke..
In here http://www.ncbi.nlm.nih.gov/pubmed/15630374 I found that:

This information is absolutely WRONG. We have had quite a few patients on this forum over the years who had surgery at the House Clinic after failed radiation with very good results. House indeed published a study some years ago regarding surgery after radiation, and even though (naturally) they have a bias toward surgery, careful reading of the study reveals that really the differences in outcome between radiated and non-radiated tumors were not statistically significant. As for the study that you mention, it is outdated, and based on a very limited number of patients, and by a group that is not the best in terms of overall outcomes.

After my failed radiation I consulted with 5 experienced surgeons. One said that I had 100% chance of facial paralysis. I found afterwards that most of his patients do have paralysis anyway  So good that I stayed away from him. The rest told me that really there is no difference, and no way you can tell if a tumor will be difficult to remove/sticky etc. before getting there, no matter whether it is radiated or not. The surgeon I chose eventually told me that radiated tumors are not more difficult in the hands of an experienced surgeon and he was right. I didn't have any facial problems after my surgery.

Regarding your other question about having help, I would strongly recommend to arrange for help, at least for a week or two after being discharged. This surgery is not a walk in the park and you cannot predict in what condition you will be (i.e. dizziness etc.). It is better to be prepared.  I had family fly all the way from Europe to Canada to help me out.

Another thing that I wanted to mention is that the control rates mentioned by your radiation oncologist indeed don't look that great. Is this center specialized in these tumors? Sometimes Linac machines are more specialized in various types of cancer. You may want to seek the advice from a more experienced center.

Obviously the choice between the two is yours, and as everyone else mentioned, research is very important. There are many considerations, such as access to specialists, overall situation, age, personal preference etc. My advice is, whatever you do to seek the most experienced specialists that you can get access to.

Marianna

[joanna_an]

I also have to mention that although we have a GK machine here, in Australia, it was only turned on in 2010 and the radiation oncologist that I met said he only treated 40 to 50 cases of AN and he doesn't have long term results... And as mentioned, the Linac results are not great... And I have two experienced surgeons (one ENT and one neurosurgeon) and everyone I had gotten in contact with had only good things to say about them..
It's funny.. I had laser eye surgery which wasn't recommended for me, as I have a thin cornea.. Could have gone blind.. Now everyone is recommending surgery (GP, specialist, radiation oncologist) and I am still balancing things out
Yes, I have decided to fly my brother over here. As soon as we get the visitor visa we will schedule the surgery. Whatever happens it is better with family around.
I had balance problems (very dizzy) in October, headaches, loud tinnitus and some facial numbness but they all went away... Only hearing loss and mild tinnitus now.

Joanna.
31 years old, left AN 18x16x13 mm

[BoedyGirl]

Hi,

I was 23 when they took out my 5.4 cm AN and I was out of the hospital after 5 days up and walking the same day as my surgery. I used a walker for my first few days home but after that I could move just fine. I was very fit before I had made it halfway into the inanity workout program and I think that made all the difference. I was able to shower on my own with the use of a stool in the shower so I could sit if needed but mostly just napped a lot. You should be just fine if you live with nine people. Oh btw I am 4.5 months post op and back into the insanity workout program but had to start very slow be careful not to overwork yourself to quickly after major surgery

[joanna_an]

Thanks BoedyGirl.. I have already made plans for help if I do the surgery. I can't really count on bouncing back as soon as you did.  I am glad to hear tho that you have recovered so well after such a big tumor..