Results of last MRI show substantial growth in last 6 months 22x21 to 26x22.

[Nana2014]

Diagnosed with AN about 4 years ago, been having 6 monthly MRIs. Results of the last one show substantial growth in last 6 months 22x21 to 26x22. Not feeling any different, would I be doing more harm than good waiting for next MRI in October or should I be booking surgery asap? I am so scared! Also, live in Surrey, was referred to Professional Bell at St Georges Tooting originally, should I get a second opinion, has anyone any recommendations and/or experience of Prof Bell please?

[mrwhite]

What was the recommendation from the consultant ?

There is no known growth curve for these it could be Stagnant for 4 years, have a growth and the be stagnant for another 4 years, or could grow a larger or smaller amount again.

There is no crystal ball but I think it reasonable to start considering treatment options once there is a sign of growth and have been told the same by various consultants, as essentially that is what they are waiting for. The next MRI will help show what your growth curve is at the moment.

Have other treatment options been discussed or have you been told surgery is the only option ?

There is Cyberknife, gamma knife, linac, there first two both with good records of controlling growth of ANs.

Of course you can get a second opinion, ask your gp for a referral - perhaps to dr Nick plowman at St Barts. He is very experienced and head of clinical oncology there.

Its natural to be scared, but these things are rarely fast growing, its taken 4 years for yours to, hence why I guess the consultant has said wait.

There is of course the risk, that symptoms could get worse over this time which is the best you would recover to after which ever treatment you eventually opt for. And if you feel no worse now, that could be a good time.

There is of also that the growth has been miscalculated, not negligently, but clinically, as there are different ways of measuring the sizes apparently and depends who has done it. There is more than just size to consider though, it is also location, be it close to facial and other nerves or the brain stem.

[Nana2014 in reply to mrwhite]

Many thanks for taking the time to reply. Decision has always been left to me, which in a way makes it more difficult. When I was first diagnosed I was referred to St Georges to talk about the options and then Royal Marsden to discuss radiotherapy but I wasn't keen on that. It is interesting that you mention how you are before is the best you would recover to after treatment, no one has clarified that to me and is thought provoking. Also there is always the possibility of miscalculation which makes me feel a little easier about waiting for the next scheduled scan.

[lupie-Cathy]

I totally agree with mrwhite's reply, I would definitely get a 2nd opinion and also definitely consider Gamma Knife or Cyber Knife or Linac, I had Gamma Knife in Sheffield just before Christmas for a 18x12 mm AN which was causing considerable side effects, I have had little effects from the GK apart from fatigue and the odd vertigo episode but I was getting that anyway. I would personally far rather have the GK than surgery. I have hardly any facial involvement a very slight droop which is visible to me but no one else but I have lost more hearing in that ear, but if I'd had surgery I would probably have a considerable droopy face and no hearing in that ear but of course it's all a matter of personal opinion. Ask to be referred to Sheffield for Gamma knife if that's the option you think of taking, they have funding for all so no need to worry whether you'll get it or not! Good luck with your decision let me know if you want to talk more about GK x

[Nana2014]

Hi The high risk of getting cancer was very off putting, as well as the thought of going through surgery anyway if it didn't work. It would help to go somewhere where they do both procedures and could tell you which would be better for you personally. St Georges were only interested if I wanted the operation and Marsden only interested in radiotherapy, and obviously both had to tell you all the risk's, so confusing!

[mrwhite]

What figures were yoy given for "high risk of secondary cancer"? ? I've been informed its 1-2% over 10 years, not that high compared to mortality rate of surgery which is a similar figure.

Birmingham QE do both surgery and Cyberknife, the BANA annual conference is there at the end if this month where you could ask some questions and find out some details from the experts 1st hand. Are you a member?

[Nana2014 in reply to mrwhite]

Yes I have joined. I don't think I can wait that long, last few days been having problems - numbness moving across the face to my nose and trouble swallowing a few times.