AN regrowth after surgery and proton radiation

[Michellebelle007]

I just received results of my latest MRI that shows brain edema and rapid regrowth of my AN. I had translab. surgery in 2018 on a 3.5 cm AN. They removed approximately 85% of tumor. By 2021 the tumor had regrown to 1.5cm. I was told I was not a good candidate for another surgery and was referred to radiation. I choose proton radiation and completed treatment March 2022 my AN was around 2cm at the time of radiation. I am two years post proton radiation and my MRI show my tumor has grown to 2.9cm. It is causing brain edema, and compression on the brainstem. The Proton doctor is saying I may need surgery again to debunk the mass. I’m very discouraged and thought radiation was end of the road for my AN.. Has anyone else had something similar experience and can provide insight. I’m told a second surgery after radiation is very challenging. I live in Dallas but am open to recommendations anywhere in US for surgeons with expertise on revisions after proton radiation on a large AN.

[DanFouratt]

Michelle,

sorry about your issues.  i have not been through them but you may want to take a look at this from March 4th. 

UCSD - High Volume Centers vs. Narrow Networks

UCSD is one of the highest volume centers in American and the doctors were inspiring (my opinion). The presentation may give you some insight on next steps.

Good Luck,

Dan

[v357139]

Hi Michelle.  Sorry for your bad news.  While a tumor after radiation may be more challenging, a very experienced team can still get the job done.  Friedman and Schwartz at UCSD are very highly experienced.  I had Schwartz and Slattery when Schwartz was at House.  I consider Schwartz one of the top neurosurgeons for AN in the world, in my opinion.  The House Clinic also has a long history of AN surgery, although I am not familiar with the neurosurgeons there these days.  A consult with UCSD and another with House would be as good of a start as you can do.  I seem to recall there are also some pretty experienced teams in Texas as well, although I am not familiar.  Pick a very experienced team, and you still have a very good chance, even after radiosurgery.  Best of luck and keep us posted.

[Director]

Hi Michellebelle007,

I'm sorry to read your post about the possibility of another treatment.  The ANA has a regrowth support group that might be helpful for you, and we can also connect you with peer mentors that have experienced regrowth. 

The regrowth group is meeting Thursday, May 9 at 7 pm ET, and you can register here.

https://www.anausa.org/programs/support-groups/upcoming-events


The ANA Team
volunteers@anausa.org