New AN patient

[janerioux]

I am newly diagnosed on 2/8/18 and feel scared.  I am a nurse and when I have a problem I fix it.  I was fortunate to have an appointment at Mass Eye and Ear 2 weeks after my diagnosis but was not ready to hear the best treatment option for me was Watch and Wait.  I just wanted this "thing" out of my head!  I joined ANA hoping to learn more.   I live in rural Northern Maine and getting to a support group will be a challenge and I am not a Facebook user, I hope this forum and website will provide me some support.

[Patti]

Watch and wait is torture at first! In my case of finding re-growth, and having it dealt with radiation soon thereafter, I am in essentially the same position as you.  It has been 2 years and no sign of shrinkage or growth.  At some point after torturing myself with worry for months, I just decided that it really didn't matter because the tumor was going to do what it wanted anyway.  At least being in watch and wait, you'll get it measured periodically and catch it before it gets too big.  What is the size of your tumor?  I don't mean to minimize your feelings.  I have been on a long journey with mine.  But i have tortured myself so much with worry, and people are right when they say that worry doesn't solve anything!  Good luck to you!

[LakeErie]

Treatment many times results in no consequences, But often enough, complications from microsurgery or radiation are the result, and some complications can be permanent. Complications are more common with larger tumors, so the watch and wait process scans periodically to prevent the tumor from reaching a large size. My tumor, both times, was so large that I had no choice to wait. If given the choice I would have waited to determine the growth pattern if any before committing to treatment.
In treating large tumors, subtotal removals are becoming more common to preserve neurologic function, so you may never get it "out of your head " completely. And the less invasive radiation treatments merely rearrange the tumor cell DNA to stop growth, so there is some probability that some or all of the tumor remains in place even over time. The tumors are known to be slow growing so you have time to consider what to do and maybe with a little more time you will adjust to your new knowledge of the tumor and be less anxious about its presence. I hope so. Good luck

[notaclone13]

Hi Janerioux,
I am also new to this forum, diagnosed in January.  This forum is a virtual font of knowledge and sharing regarding coping with and getting treatment for ANs. I have found it very supportive and enjoy the camaraderie of the many enlightened, friendly folks who post on this forum.  I am confident you will find the support you need.  As a medical researcher, I too find it frustrating to be in a situation where the best solution is to do nothing.  We would all like to have this unwanted neuronal hitchhiker out of heads ASAP.  So welcome to the forum and feel free to inquire, share and if needed to vent.  We all understand what you are going through and you are among friends here.

[ANSydney]

I've been on watch and wait for 1.5 years now and the tumor is "stable". For me, observation makes the most sense. Measure and only consider treating if there is significant growth.

I'll report back every 6 months on my progress.

[janerioux]

Thank you for your all your replies.  I was getting used to the idea and learning so much and Monday I received a call that my AN may be a meningioma, treatment being the same.  Feels like a roller coaster.  I am taking advice from the ANA and seeking a second opinion and continuing to educate myself. 

[rodneyd]

Hi Jane,

I was diagnosed with a 9 mm AN in October, 2013.  My initial reaction was to have that rascal surgically removed.  But I started having second thoughts and decided Cyberknife was the treatment option for me.  But I still have some hearing in my AN ear, and there was a real possibility that that hearing would be lost due to the radiation treatment, so I decided to stay on W & W to see what the growth rate would be for a small AN such as mine.

In June, 2015, there was an article in the AN newsletter about research conducted by the Mass Eye and Ear Hospital showing that taking one baby aspirin per day can help retard the growth of the AN.  This research had been reviewed by the ANA Physicians panel and was recommended by them as being safe and hopefully helpful.  I figured one baby aspirin per day also has other befenicial health benefits so why not begin taking one. 

My AN grew slightly until my last MRI in July, 2017, when it was discovered that the tumor shrank by 31%.  Needless to say, I was ecstatic about the results.  Was it due to the baby aspirin regimen?  Who knows.  But I felt it was better to take the aspirin than to do nothing at all. 

Anyway, I will be very interested in seeing the results of my next MRI in July, 2018.

I just saw a research article that suggested a drug called mifepristone, a drug used to chemically induce abortions, is 80% effective in retarding AN cell growth in a labrotory setting.  Mass Eye and Ear is about ready to start clinical trials on this drug, which has already received FDA approval for the aboution process.  Hopefully, these trials will prove the drug effective and then it might be prescribed for AN patients (who are not pregnant!).  It would be great to someday take a pill and retard or reduce the size of the AN.

Rod