Has anyone got any information or experience of a AN that is cystic? I have been to see the specialist to discuss options and it seems surgery is pretty much my only option.
Radiotherapy is being discussed with the MDT but unlikely apparently due to the risks of swelling after treatment and the cystic appearance.
A bit anxious about going down the surgery route.
Any advice or experience would be greatly recieved.
Hello Nikzstew. My 2.3cm AN has a cystic component. After watch and wait for a year, my MRI showed a small increase in size and I was told I should have treatment. Fine balance between surgery or radiotherapy but my 1st consultation recommended surgery. I was terribly concerned about surgery so asked if it was possible to consider RT instead. My consultant arranged for me to discuss this option with the RT team (at the end of the day the decision is down to me which is really scarey). Following this I felt I wanted to go down RT route, which my main consultant then approved. Of course every AN is different- not just size but exact location too. Decision made, I then had to have completely unrelated surgery and RT for breast cancer done first. By that time my AN team decided I should have 6 weeks of daily radiotherapy- 30 in total, rather than the 1 that I expected, which means less chance of swelling. This was completed early Feb 23. So now that is over I just have to wait and see, I will have an MRI around August time, but in the meantime any side effects such as headaches or nausea I need to let them know and may need a course of steroids. Have to say I sailed through the RT- no fatigue. I appreciate in time I may still have to have surgery (which may be mire complicated due to the cystic component, but that was my decision). I feel fine other than a general fuzziness and feeling a bit spaced out, dizzy only in the darkness, tinnitus and I was almost deaf left side anyway. But so far (only 6 weeks ago) no change. I'm living life to the full, and feel very positive. The risks of certain side effects following RT are less than surgery but cystic does add the complication of making future surgery more difficult. My discussions with consultant were long honest & detailed. You might not be given the option of RT, if that had been the case with me of course I would have 100% taken my consultant's recommendation. Whatever you face I wish you the very best.
Thank you so much for your reply. Sounds like you've been through lots I'm glad it's all worked out.You've given me hope as I would much rather have radiotherapy and your situation sounds very similar to myself.
He did say he'll discuss with the radiologist so fingers crossed.
Good luck with your recovery.
Hi Nikzstew. I've gone down the same route as Snips1960. My AN was 1cm on first diagnosis in Feb 22, but had grown to 1.5cm by Sept 22, with most of that growth being a cyst. My consultant, a surgeon, wanted to do translab surgery to remove it, but I really didn't want surgery for 2 reasons - a) my 94yo mum was ill, and I wouldn't be able to look after her during my recovery from surgery, and b) I was just plain terrified of surgery!
The consultant therefore referred me to another hospital to discuss the possibility of radiotherapy/radiosurgery. That hospital agreed that gamma/cyberknife radiosurgery might well cause the cyst to swell, but they offered Fractionated Stereotactic Radiotherapy - 25 daily short blasts (5 weeks mon-fri), which they thought should prevent swelling. It's not the perfect solution - it probably won't shrink the tumour, but will hopefully stop it in its tracks, and prevent further growth.
I completed the radiotherapy in Jan/Feb this year, and have a follow-up MRI on 15th April. No side effects other than tiredness and maybe my tinnitus is a bit louder, but neither of these is debilitating. If it fails, then surgery is still an option, but if it's successful, then yippee!
I hope the MDT come up with an RT solution for you xx
Thankyou, I'm feeling alot more positive reading this. Really appreciate you taking the time to reply. Hope the MRI in April shows it's worked.
Little scared 😁
Would appreciate advice pleade
Mariapia66
Friend has acoustic neuroma
