Under 40?

[New girl]

Hi MS444,

I was also 37 when I was diagnosed.  My tumor was a similar size.  All the doctors I saw told me my treatment was up to me: surgery, radiation or watch and wait.   However some did tell me that surgery would be my best bet now due to my young age and if I had a recurrence later in life than radiation would be done.  This was based on them also stating that gamma knife could only be done once.  They also told me some stats on secondary malignancies due to the radiation (cant remember now - maybe I can find it in my notes).  However after reading this forum not all doctors believe this.  It seems if you talk to many doctors you will get many different sometimes conflicting opinions.  Surgery went well for me but as NY Lady states no treatment is perfect so you really need to weigh all options and decided what you think will be best for you.  As you can see from the replies to your post that there is still quite a bit of debate about the different treatment types.  It is not an easy decision to make but thankfully most of these tumors grow slowly so you have time to think about what you feel comfortable with. 

Best wishes,
not so New girl

[Ahollo]

Hi MS444,

I am 36 and was feeling much the same way you were...what was the best treatment for me, and very curious of the outcome of others.

A few weeks back I went ahead and scheduled surgery through the military (hubby is in the AF). That's when I made my first post here. I was scared, doubting myself, and seeking help, and direction even though my message might not have come across that way. I also started contemplating radiation because I was afraid the surgeons here we're not the most skilled. Although they work on wounded warriors, and I am sure they're skilled in other types of brain surgeries, I was still feeling very unsettled. I called as many people as I could. My nurse friends, my grandmother who had radiation for cancer, etc. I was wanting the answer to pop up in front of me, and would cry telling my husband that I just wanted someone else to make this decision for me!

Through my phone calls we learned someone from my husband's hometown worked for Dr. Friedman @USC Keck Medical. She saw him years back for the same tumor. It was immediate relief after we connected. I sent my scans to him, and was able to have a phone consult the day he recieved them. It was a little strange how it aligned, but I've decided to have the surgery there, and I'm scheduled April 7th. We're in Texas, so we'll get to fly out, and hopefully have some beach time on some waters that aren't brown.

It is such a personal decision. I opted for surgery because of my symptoms. I have severe facial tingling, a nasty taste in mouth, and the tinnitus is making me crazy. I also have headaches often on my AN side. My fear with radiation was those symptoms would increase. It scared me too that through radiation the tumor might swell before it shrinks. With my symptoms, I just want it gone.

Everyone is so different, and there are so many different reasons people choose their treatment option. I'm not sure if I really answered your question, but I hope I helped somehow. I tend to ramble!

For me, Dr. Friedman recommended translab surgery. I will lose my hearing in my right ear. I am still scared, but know I'm in good hands, so that makes it a little better.

I'll post more as my surgery gets closer, and in the mean time feel free to message me. Oh yeah, my surgery is scheduled exactly one week before my 37th birthday! Yay! Happy birthday to me!

Good luck in making your decision. It's not an easy one, but your gut will lead you in the way that's best for you. You'll be in my thoughts and prayers!

Ashley

[ms444]

Thank you ALL for your comments - it is helpful to hear others perspectives....

Ashley i can see how your symptoms affected your decision. I wish you the BEST in your upcoming surgery. i am kind of envious that you made a decision and are moving forward! i am hoping that i can just be brave and and make a decision one way or another...i'm tired of thinking about this pesky thing!

[kmr1969]

ms444,

I was 42 when diagnosed and had a larger tumor - 2.8 cm.

I too had a lot of anxiety about traditional surgery and I spoke to several doctors on both sides of the issue - those that do traditional surgery and those that do radiosurgery.

My decision was made when I met with a GK surgeon in Baltimore, who advised me that if I were his brother he would tell me to do the traditional surgery.  My age and otherwise good health factored into his advice.

He, a GK surgeon, was concerned about the long term affect of the radiation.  This could have been because my tumor was on the upper end of what is considered viable for GK and because it was getting close to the brain stem.  Therefore, presumably a larger does of radiation would have been necessary and the margin of error for the treatment area was smaller. He was clearly concerned that although the GK procedure is very precise, that radiation can affect things outside of the designed treatment area and he was worried about the long-term affects to me.

I went ahead with traditional surgery at House and have been doing very well ever since.  Not perfect, but very well.

Good luck to you,

Ken

[Alix May]

I'm 36, and as of now, we are likely doing translab. I have family history of cancer on both sides (two grandparents died from cancer, my mom is recovering from endometrial cancer, and my aunt had ovarian cancer), so the added risk factor of radiation is probably not a good match for me. I like that translab has more long-term data, and that it has a good chance of preserving my facial nerve. The vertigo/balance issues are disabling for me, so I'm eager to get this thing out of my head and let my brain start coping with the damaged vestibular system.

[PaulW]

Here is a paper showing the risk of malignant transformation at 20 years....
It's 15.6 per 100000.
http://www.ncbi.nlm.nih.gov/pubmed/25434949

If we follow the scientifically accepted radiation risk model the odds double for the next 20 years and double again for the 20 years after that.... These numbers come from the lifetime studies of the Japan atomic bomb victims, radiation workers and environmental exposure.

If 15.6 per 100,000 is accurate for 20 years the risk at 50 years is 93.6 per 100,000
Or 0.09% I believe around 50% died from the malignancy..
So if your risk of dying from cancer was 33% your risk of dying from cancer 50 years after radiosurgery has increased to 33.047%.
How worried should we be about malignant transformation?

The risk of dying from Acoustic Neuroma Surgery is 0.5%. versus 0.047% for radiation in 50 years time. Over 6% of people undergoing surgery require long term rehabilitation.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3199160/

[ANGuy]

Here is a paper showing the risk of malignant transformation at 20 years....
It's 15.6 per 100000.
http://www.ncbi.nlm.nih.gov/pubmed/25434949

If we follow the scientifically accepted radiation risk model the odds double for the next 20 years and double again for the 20 years after that.... These numbers come from the lifetime studies of the Japan atomic bomb victims, radiation workers and environmental exposure.

If 15.6 per 100,000 is accurate for 20 years the risk at 50 years is 93.6 per 100,000
Or 0.09% I believe around 50% died from the malignancy..
So if your risk of dying from cancer was 33% your risk of dying from cancer 50 years after radiosurgery has increased to 33.047%.
How worried should we be about malignant transformation?

The risk of dying from Acoustic Neuroma Surgery is 0.5%. versus 0.047% for radiation in 50 years time. Over 6% of people undergoing surgery require long term rehabilitation.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3199160/

Thank you for posting that.  I don't follow the subtle statistical matters in the study because it's a bit over my head.  But, the study and your post show that there is a risk of malignancy with conventional surgery and with WW as well.  Which approach is more risky, and for who, and for how long, I can't figure out and one study probably isn't enough to say for sure anyway.  But, the issue you and the study introduce into the conversation is that there is risk with all of this stuff.

As for the risk being small, the logical part of me says "Yes, my chances of that happening are so small I should worry more about a tree limb falling on me or a drunk driver crossing the centerline."  But, I kind of stopped thinking that way when I found out I was the 1 in 100,000 winner in the AN lottery.

I would definitely like to learn more about this as I age and make my way towards the likely inevitability of needing some kind of treatment.  I'm hoping my tumor will hold off until there is an ideal intersection of firm knowledge of the risks of radiation treatment, improvements in the radiation treatment, and me being old enough that I wouldn't ave to worry about any of this anyway.

One thing that did strike me about the case in the study was that it transformed into a malignancy only a few years after the treatment if I read it correctly.

[PaulW]

That particular patient had failed surgery, failed radiation, then failed radiation again, when it became malignant.
There is a link between unrelated malignancy and treatment failure.....

It's known that some people are more prone to malignancy than others. People with NF2 for instance have a much higher chance of malignant transformation.

It's still unknown whether the malignant transformations are largely occurring in people susceptible to this sort of thing or not. But the research is pointing that way.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3379795/

The odds for malignant transformation increase with the total amount of radiation received.. The odds of small tumours is less than big tumours. More accurate machines also deliver less radiation. The higher dosages associated with fractionated radiotherapy are also thought to cause a higher amount of malignant transformations. Typically 50 Gy for radiotherapy versus 12-13Gy for Radiosurgery

[ANGuy]

Thank you for providing more information:thumbsup:

[PaulW]

Acoustic neuromas are actually not that rare... Occurrence is 1.4 per 100000 per year that is detected. From autopsy studies the occurrence is 2.1 per 100000 per year.. So many still go undetected.

2.1 per 100000 per year... With an 80 year lifespan... 168 per 100000 people over a life time... That's one in 600

 In my circle of friends and acquaintances I know 6 people.. with an AN excluding people I have met through support groups.. 1 friend.  1 co worker. 3 direct relatives of friends. 1 x work customer.

[ANGuy]

Acoustic neuromas are actually not that rare... Occurrence is 1.4 per 100000 per year that is detected. From autopsy studies the occurrence is 2.1 per 100000 per year.. So many still go undetected.

2.1 per 100000 per year... With an 80 year lifespan... 168 per 100000 people over a life time... That's one in 600

 In my circle of friends and acquaintances I know 6 people.. with an AN excluding people I have met through support groups.. 1 friend.  1 co worker. 3 direct relatives of friends. 1 x work customer.

That, and the fact that there are so many rare things to get, that we are bound to get something sooner or later.  In our case, it just happens to be AN.  If I didn't get an AN, I would have gotten something else and thought that that was a longshot.  Hopefully we won't hit this type of lottery too often as getting an AN doesn't mean we can't get some other rare thing.

It kind of reminds me of the scene in "Garp" where Robin Williams wants to buy a house after a plane crashed into it.  It's "pre-disastered" he exclaimed. 

[evestew1]

I was 40 when diagnosed with 3 cm AN -- most of the docs (except the radiation oncologist) thought that my tumor was too large for radiation to be safely administered.  The radiation oncologist, however,  thought that I would be a candidate for radiation but also told me that radiation 1) would not shrink my tumor (and therefore not alleviate my symptoms); 2) would make surgery more difficult in the future if it was ever needed; and 3) outcome data for the radiation doses he was suggesting have only been tracked for 10 years.  Based on that information, I decided radiation was not for me.  I was otherwise in great health and my risk for surgery complications was low.  I had translab surgery in Feb and fortunately have had a very good recovery except that I have facial paralysis (and of course SSD).  I feel I made the right treatment decision for me but I had a lot of uncertainty right up until the day before my surgery.  Only you and your medical team can determine what is best for you -- it is a hard process, so hang in there!

[michellef08]

Hi ms444,
I was 27 when I was diagnosed with my tumor, and had it removed! I am now (almost) 2 years post-op. Because of my young age, every specialist I saw recommended surgery, but then it's a matter of which approach you are comfortable with, and what doctors have the most experience.

Have you sent your MRI to House in LA? They do free phone consultations, https://www.houseclinic.com/consultation/acousticneuroma
It is where I had my tumor removed with Dr. Schwartz and Dr. Friedman (who has since moved to USC). They were beyond amazing! They removed my entire tumor (small in size - 1 cm), saved my hearing, and I had no facial or balance issues whatsoever!

My advice is see as many specialists as you can, and do as much research as you can until you come to a decision that feels right for you. The good thing about this tumor is that is grows slowly, so you have time to research your options. Let me know if you have other questions, I am happy to share my story!

[MMusella]

I am 40, I did alot of research as well, my outcome was great because of my team,rehabilitation, and attitude! !!! (So important ).. I had a 3.5 cm..tumor removed a 13 hour surgery and everything went exactly what I was told.. I believed in everyone and most importantly I believed in myself! !! I have no headaches  at all and my energy is sky rocketed!! (My one doctor did tell me that I won't realize how yucky iv been feeling till its out)..&he was so right!!! I can't speak for anyone else but it wasn't bad, and of I had it to do it again I would...I was back to normal life in 8 weeks..driving after 4 weeks. .so do your research, go in with the right questions and go with your gut instinct. ..knowledge is power..one thing I have learned is you are your own advocate! !

[Pharm925]

I was 25 years old at diagnosis and 27 years old when I had surgery. I am probably one of the youngest on here at diagnosis...and it was right after I had just had my thyroid removed due to thyroid cancer. I've been through a lot at a young age. I hope I'm good for at least another 50 years!! Lol. I had the AN removed via middle fossa a year ago and now doing very well. Just found out my last MRI was clean! I think this method was best for my age since I'm younger and ability to recover faster. If you have questions about my experience, let me know!