re-growth/continued growth after radiation treatment

[tsl]

I'm considering radiationsurgery/therapy for the treatment of my AN.  When I discussed this with my Dr., he told me to keep in mind that should I ever need surgery, it would be more difficult and chances of preserving the facial nerve would be less.

I've see postings about re-growth after surgery.  I'm curious if anyone who was treated with radiation has had a problem with continued/re-growth of his/her AN.  If yes, what did you do?

Thanks,
Theresa 

[Dealy]

First of all let me say that by no means do I proclaim myself and expert on this subject. However I did receive radiation alittle over a year ago at Johns Hopkins. See my rexults I posted under one year results after one year under AN Issues. I just had  my one year MRI on June 26th of this year. However-to answer your question, Yes you can have regrowth after radiation. Depending on who you ask-the difficulty can be more difficult to remove as it adheres to the nerves. At this point I recall one person on this site who had failure and surgery after aliittle over 5 years after radiation. he had his surgery at House Institute in LA. I remember him saying they left part of the tumor on his facial nerve but was successful in removing the rest of the tumor and his was around 2.4CM. He went by the handle of B-or Brian and no longer posts but you can pull up his profile on this site. I  am sure their are other's on this site who may chime in an answer your question more precisely then myself. It is a tough decision to make but for me is was the only option. Surgery would have left me totally deaf-not only in my AN ear-but deaf for good in both ears since I am an Nf2.. I for one decided the risks outweigh the possibility of regrowth which can happen also in surgery so there never is a 100% guarantee. In my research I have found that whether you choose surgery or radiation-go with an institute that has vast exoerience and can give you a track record of success. So many facilities are starting too promote radiation but either lack the experience or proven viability. I for one-chose not to be their so called Guinea Pig. Thanks-Ron-Good Luck on a decision for Treatment

[sgerrard]

  There are no guarantees, as you already know. But one good thing is that there is not a lot of data on surgery after radiation, because it doesn't happen very often. In the last 5 years particularly, the growth control rate with radiation has been very good.
  When tumors do require surgery after radiation, it is not clear that the difficulties encountered are due to the radiation. The kind of tumors most likely to regrow after radiation are probably also the kind that would pose difficulties in any surgery, even if it was the first treatment. Sticky tangled tumors happen; it has not been established that radiation makes them significantly stickier.
  I think the more important issue when considering radiation treatment is that it will leave most of the tumor mass in place for a fairly long time. That means that it may continue to press against some nearby nerves and blood vessels and disrupt things a little, even though it has stopped growing. However, those nearby things are the same ones that surgery is most likely to scrape or tweak or cut, so there is no easy way out. For smaller ones like ours, I think radiation makes a lot of sense.

[ppearl214]

Theresa,

There will be those pretty close to the scenario that you note at the brunch this Sunday.... I'm sure they will be happy to assist you with their thoughts on this as well.....

Phyl

[BeckyB]

I was told the same thing you were told about surgery after radiation treatments, therefore, I scheduled myself for surgery.  When I met with the second doctor that would  perform the surgery, he said that radiation is a possibility.  He got me to thinking.  I took a weekend and looked around this web site and others to compare different options.  (It can get overwhelming.)  While standing outside one day, listening to nature, I changed my mind about surgery.  I just wasn't ready to give up what hearing I had.  Surgery would have been a 100% loss of hearing.  Go through a day with an ear plug in your ear and see how well you do with hearing in only one ear.  Plus, with surgery, there is a possibility that part of the tumor would be left, if need be, to help preserve the facial nerve.  (That means a possible regrowth in the future.)  According to what I read, and I may be wrong, FSR had a better chance of preserving hearing than GK so I chose FSR (RSR).  CK sounded promising, but I didn't feel there was too much info out there or where to go for it by the time I had to make my decision.  I wanted to have something done between July and August and it was already the end of June when I changed my mind about surgery.  (A little too late for me, but I am glad that a thread was started for CK.)   At this point, FSR at Thomas Jefferson has been going well.  I have just completed treatment 15 of 26.  It only takes about 10 minutes for each treatment.  The only affect I have right now, and it doesn't bother me much, is the tinnitus has gotten (transient) louder.  Like everyone else, I hope this thing (AN) will be terminated when I am done and if surgery is needed in the future, I hope it isn't, then I will deal with that when it happens.  (It's really up to the guy upstairs.)  Maybe by then, some new miracle will occur.  Look how far the medical field has come with radiation therapy.  One can only hope!

I wish you luck in your decision.  Here is a tip - If you go with FSR, have them cut holes in the mask for your eyes.  It makes it less claustrophobic.  At least it did for me.