I'm Afraid!!!! I need encouragement

[sandyinwisconsin]

I'm 43 years old with a 1 cm tumor in the bony auditory canal. My hearing is about 50% in the AN ear. 

I saw several surgeons in Madison, WI who recommended surgery, but I'm afraid of the facial paralysis.    The oncologist recommended 27 treatments of FSRT for a total of 48 gray. I have to travel 3 hours one way.  (I live in a small area where you don't see AN's too often so I have to travel to Madison.)   

I'm concerned about radiating at 43 years old.  I've been reading a lot of posts, but can anyone relate to me?  My doctor is out of the country until November so I would start treatments then.  He was sure that the low dose radiation would help spare good tissue and my balance nerve.  He thought my hearing would take a hit. 

I know its my decision, but am I being selfish for not doing surgery?  I'm trying to save my mental sanity too so I can finish raising my 12 and 14 year old.  I have a great husband who supports me no matter what I chose. 

I am really having a hard time accepting that something has to be done and I don't make decisions too well.  I'm encouraged by the articles I read about radiation, but is radiation meant for older patients? 

Can anyone who had 27 treatments respond to how they are doing?  I know its kind of rare to have FSRT, and I talked to many folks already who are probably reading this.  Thank you to those I talked to.  Has anyone had facial paralysis/weakness from FSRT? 

I'm just really scared I'm making the wrong choice and I'll end up having surgery after receiving all that radiation.

Thank you, 

Sandyinwisconsin

[Tod]

Sandy, take a deep breath and try to relax. I had 28 sessions of FSR 18 months ago at the age of 51. Admittedly, this was two years after a 32 hour surgery and regrowth, but the bit they had leave behind was was a bit smaller than yours is now.

I was unusual in that I had a bit of difficulty with the radiation in terms of nausea, but everything else was, and is fine.

And keeps getting better.

-Tod

[Echo]

Hi Sandy,

Take a deep breath and try to calm yourself.  Research your options and get more than one opinion regarding surgery and radiation.  I was diagnosed with a 1.8 cm AN and took a full year to reach my decision.  Like you I struggled with making a choice between surgery or radiation.  In my case my symptoms were increasing and my one year MRI showed the AN had grown to 2.4 cm.  At that point I chose Gamma Knife and had my single session treatment this past Sept. 11th. I'm 58 years old.

My understanding is that Gamma is an excellent choice for many older people - especially in their late 50's and beyond.  If you haven't looked into this option, you may want to find a Gamma Center that can provide you with a consult and find out if it is a suitable option for you.  Sorry but I'm not sure what the cut off age may be where they would consider someone to young for Gamma Knife. 

In making my decision I made lists of each treatment and what my personal risk percentages were based on the consults I had.  I listed pros and cons for each and I then considered my personal feelings and how each treatment would effect both me and my family.  Eventually things started to gel and I knew the direction I would head when it came time to make a decision.  It's not an easy process for any of us, but you will get there eventually. 

One last note, I raised the same question as you with one of the specialists I consulted.  You said you "were afraid of making a wrong decision and ending up having surgery after radiation."  The response I received was to focus on what treatment best fits me right now.  Do not focus on a second treatment down the road that may never be required."   Not sure if that helps you or not, but at least you know you're not the only one who has asked those questions.

Best of luck to you,
Cathie. 

[arizonajack]

I have to travel 3 hours one way.

I wouldn't let that be an issue. I once drove 3 hours one way to fight I traffic ticket. It was worth the trip because I beat the ticket then drove 3 hours home smiling all the way.

Anyway, I'm 66 and I took the Gamma Knife treatment, one day in and out, and I also had a small tumor that had eliminated my hearing on that side.

There have been several posts recently by people your age facing the same decision that were responded to by people of the same age that had already had their treatment.

Keep checking this thread and I'm sure you'll get several responses from people your own age.

[proudmomof3]

Sandy,

I am also a 43 year old female with 3 children, ages 5,7,and 11. I was diagnosed 2 years ago with a 1.5cm, same location as yours. I also have hearing loss in my right ear, which is how they discovered the AN to begin with.

I had the choice of surgery or Gamma Knife (radiation). I chose GK. Why? Because I did not want facial paralysis, I have children that depend on me, and it was not a life-threatening situation where I had to have the surgery. Since the tumor was small enough for radiation, I chose radiation. Did I make the right decision? I think so. I know that my life is almost back to normal. I did lose more hearing in my ear, but compared to what I could have gone through with surgery, I think I am pretty fortunate. I was in and out the hospital the same day, my children didn't even know what happened, and basically I recovered quickly and was back to normal activities within a few weeks (I was much slower to recover than the average person for some reason). The main side effect I had was nausea and headaches. I do not know if the headaches are related to the AN or the GK, but I do believe the nausea was...but that has gone away with time.

So I can honestly say 2 years later, I have no re-growth, I can be a mom to my kids, and I really don't even worry about this pesky little thing in my head. The thing that has affected me the most is the loss of hearing, which would have happened with either surgery or GK.

Good luck with your decision. Don't doubt yourself. You are young and you have to do what is right for you and your family.

Keep us posted!

Cheryl

[Jim Scott]

Hi, Sandy ~

I underwent 26 FSR sessions for a total of 27 Gy on a 'debulked' (from 4.5 to 2.5 cm) AN.  The sessions were uneventful and I suffered no side effects, driving myself the 62-mile round trip 5 days per week (weekends off).  That was 7 years ago.  Subsequent MRI scans in the years following indicated the beginnings of tumor necrosis and even a hint of shrinkage.  Today, I'm doing great and my AN experience is rapidly receding in the rear-view mirror of my life.

I was 63 at the time of the FSR and neither my neurosurgeon or the radiation oncologist that treated my case suggested any risk in receiving the radiation.  Frankly, I suspect that the risks of radiation treatment are often based on hypothetical (what if?) situations that do not apply in most cases. 

However, the reality remains that you have only two options: surgery or radiation.  If surgery frightens you to the point where you refuse to have it then radiation is your only remaining choice.  Frankly, FSR is probably the easiest and safest form of AN radiation treatment .  To be honest, Sandy, any form of AN treatment carries some risk that simply cannot be totally avoided.  You know the risks of surgery, even though I hasten to add that many AN patients undergo surgery with little or no complications.  I was one of them.  Likewise, many AN patients undergo some form of radiation, including FSR, with no complications.  I was also one of them.  At some point you have to look at your options and make a choice, based on your research, not your fears.  I trust that with your husband's support and whatever help we can offer, you'll be able to do that.  Please keep us updated.  Thanks.

Jim 

[ASG]

Hi Sandy,

I think how you are feeling right now is completely normal and I can totally relate.  You said you are worried about getting radiation so young, so I'm assuming you are worried about the risk of malignancy?  I can see why that would be a scary thought.  It sounds like you're also thinking a lot about the idea of radiation not working and facial paralysis from surgery.  Those are scary thoughts too!  Its no wonder at all that you have been feeling afraid, and feeling like you don't want to make the wrong choice.  When I was making my treatment decision, I had all those same scary thoughts, and the same feeling of choice-paralysis, and I thought I would never get out of it.  I'm here to encourage you that yes, you will overcome the fear, you will make a choice that feels right to you, and you will be able to move on with your life (even if it doesn't feel that way now).

As a point of comparison, I'm younger than you (31), and have an even larger tumor than you (2.9cm), and I chose radiation over surgery.  My wife and I have an 18 month old.  Just like you, when I consulted with surgical specialists, they recommended surgery, and when I consulted with radiation specialists, they recommended radiation.   I think one of the secret symptoms of AN is "catastrophic thoughts about your health/future that you can't get rid of".  These are thoughts about things that in reality, are probably not going to happen, or even if they did happen we'd deal with it, but these thoughts still make our lives miserable and are obstacles to making a decision that feels OK.  Of course the treatment decision is a big one, and supposed to be challenging, but it was still helpful for me to change how I thought about my situation to overcome these irrational thoughts. 

Regarding the idea that radiation might not work, and a future surgery could be more difficult-  I was told by Dr. Chang (Stanford) and Dr. Lunsford (UPMC) that radiation had a 95% chance of success.  Even the surgeons said 90%.  Dr. Chang and Dr. Lunsford also told me that for those who need subsequent surgery, the surgery is not necessarily more difficult (Dr. Lunsford said its more difficult in 2% of cases).  Lets be conservative and say 90% chance of success and 10% chance that subsequent surgery would be more difficult.  The multiplicative probability that choosing radiation would not work AND lead to a more difficult surgery is (.10*.10 = .01) 1%.  When I thought about it that way, I was able to accept the risk without an irrational fear thought.

Regarding malignancy- even the surgical specialists said it was rare.  How rare?  When I went on pubmed I got the impression that if this happens to you, you get your own journal article written about you.  Dr. Chang and Dr. Lunsford said the risk of malignancy was about 1 in 10,000.  At my appt, the medical physicist at UPMC told me he thought the risk was 1 in 100,000, and that furthermore, in the few cases of this happening it may have been that the tumors were going to become malignant anyway, as opposed to a causal link with radiation treatment.  Meanwhile surgery has its own, again very rare, risks.  Thinking about it this way allowed me to consider this risk in my treatment decision without spiraling out of control. 

Just to be clear I have no medical training and this is not a blanket endorsement of radiation.  I just want to encourage you to do as much research as you can and "think about your thinking" to overcome catastrophic thoughts.  I think surgery is great too.  I hope someone will post their experience of how they chose surgery so you can get that side.

Finally, after my diagnosis I started practicing mindfulness meditation to control my stress level.  It was probably the best thing I did and had a positive impact on making a decision.  At the bottom I've pasted links to some books that helped me if interested.  You can also message me if you have any questions.  I hope you are feeling a bit better this morning (I was always more likely to stress out with fear at night).  This stress is temporary and have faith that feelings of acceptance and hope are waiting for you around the corner.

Adam

"Meditation for Beginners" by Jack Kornfield http://www.amazon.com/Meditation-Beginners-Jack-Kornfield/dp/1591799422/ref=sr_1_2?ie=UTF8&qid=1380290382&sr=8-2&keywords=beginning+meditation
"Full Catastrophe Living" by Jon Kabat-Zinn (describes meditation program for people with illness at UMass Hospital) http://www.amazon.com/Full-Catastrophe-Living-Wisdom-Illness/dp/0385303122/ref=sr_1_2?ie=UTF8&qid=1380290421&sr=8-2&keywords=full+catastrophe+living

[Gloria Nailor]

Hi Sandy, we all remember how scary this was in the beginning and how hard it is to make a decision.  These tumors grow slowly, so there is time to think and make your decision, no need to rush.  I also remember how I just wanted this thing out of my head and wanted to get on with my life. I recently had Gamma Knife for a tumor that is regrowing. I had researched FSR and GK and found that both have the chance of similar side effects.  I personally didn't feel that FSR was as accurate a type of radiation for these types of rumors, GK is extremely accurate.  It's also quicker, my treatment was 40 minutes, although I was at the hospital for 6 hours that day, lots of preparation time for the actual treatment, to make sure it is precise. GK has been around since the 60's too. My tumor was too large to initially have GK, so I experienced surgery also, which was way harder and longer to recover from.  You can always do radiation now and monitor it for regrowth and choose surgery if needed in the future. You will know what feels right based on your research. Good luck, I hope you find peace with your decision, Be well!

[arizonajack]

The possibility of future malignancy has been mentioned but you should know that it's extremely rare.

The following study of 5000 AN patients found only 1 incidence of malignancy compared with a prediction of 2.47 cases in 5000 based on national incidence figures.

https://www.ncbi.nlm.nih.gov/pubmed/17228253

For comparison purposes I searched the internet and learned that the odds of being killed in a car accident are 1 in 5000. I won't, of course, guarantee the accuracy of that statement but it does illustrate that people still go out and drive their cars.

I also found that the odds of dying of heart disease in one's lifetime is 1 in 6.

[ASG]

The following study of 5000 AN patients found only 1 incidence of malignancy compared with a prediction of 2.47 cases in 5000 based on national incidence figures.

Thanks for linking this article, Jack!  I just finished reading the study and wanted to share a few observations:
- The study wasn't actually 5000 AN patients but a mixed bag. Participants included about 2,600 AVMs, 800 ANs, 400 meningioma, and the rest "other" tumor types.
- None of the AN participants had a malignancy transfer.  The single person who developed malignancy had a cavernoma. 
- The AN patients received a marginal dose of 13Gy, while all other groups had marginal doses between 23 and 28Gy.  Last week Dr. Lunsford administered a marginal dose of 11.5Gy.  This converges with other data suggesting ANs typically receive lower radiation than other tumors/malformations.
- In the discussion the authors note that at the time of publication there were two documented cases of AN patients who had malignancy transfer following radiation.  However, they also cite other studies of AN patients who had a malignancy transfer after multiple resection surgeries who never received radiation.  Thus whether radiation causes malignancy in ANs, even rarely, is inconclusive.
- The final sentence of the article:  "In comparison with these risks, we suspect that any risk of radiosurgery causing malignancy, which is too small to have been detected by this study, is insignificant in making balanced management decisions."

I'm assuming my boss completely approves that I'm spending most of my time at work doing in depth AN research.

[PaulW]

Some Comments on Malignancy, Gamma Knife and Radiotherapy..

Many of us are a little scared of the thoughts of malignancy.

I think we need to put the risk into perspective.
First of all many of us would have had a had CT-Scan or two and thought absolutely nothing of it.
The risk of getting Cancer from your CT-Scan is relatively high, possibly as high as 1:400,
The risk isn't even declared.

https://www.ncbi.nlm.nih.gov/pubmed/20008690

An Excerpt From Scientific American

"A handful of studies published in the past decade have rekindled concerns. Researchers at the National Cancer Institute estimate that 29,000 future cancer cases could be attributed to the 72 million CT scans performed in the country in 2007. That increase is equivalent to about 2 percent of the total 1.7 million cancers diagnosed nationwide every year. A 2009 study of medical centers in the San Francisco Bay Area also calculated an elevated risk: one extra case of cancer for every 400 to 2,000 routine chest CT exams."

On Radiosurgery.
Some people are naturally susceptible to radiation and it is theorised more likely to have a malignant transformation.
People with NF2 have a genetic defect that makes them more susceptible to tumours.
No surprise then that many of the noted malignant transformations are associated with NF-2
https://www.ncbi.nlm.nih.gov/pubmed/17460521

It could very well be that Radiosurgery is very safe for 98% of the population, but far more risky to people that have a predisposition to cancer, and lack tumour suppression mechanisms.

Other factors as ASG has noted is the dosage of the treatment.
AN's receive a relatively low dose, which reduces the risk...
Different tumour types may also indicate that you have a predisposition for cancer.

There is an interesting paper here demonstrating a link between AN treatment failure and an Unrelated Malignancy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3379795/

A paper indicating FSRT increases the risk of Malignancy.... Why get 48Gy when you can get 12-13Gy
https://www.ncbi.nlm.nih.gov/pubmed/15179297

"Many publications emphaze the risks after larger-field, fractionated radiotherapy with low non-cell-killing dose delivered to central nervous system. Furthermore, therapeutic radiation doses for benign tumors associated with a long life (parasellar tumors, meningioma) were implicated in carcinogenesis. Incidence of radiation-associated tumors is linked to different factors such as age and individual genetic susceptibility."

Another factor is Tumour volume.
It takes about 100 times the radiation to zap a 3.0cm tumour versus a 10mm tumour.
By volume a 3cm tumour is nearly 100 times larger. Presumably receiving 100 times the radiation increases your risk 100 fold.

Even if you do have a malignant transformation of an AN, I believe about 75% had the cancer removed successfully.

You also need to balance that out with the risks of surgery.
Mortality rates in the US are averaging 0.5% and 6% requiring rehabilitation.
Choosing an experienced Doc reduces your risks by 70%. probably more for the best teams.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3199160/

[6pick]

Well, I just have to add my 2¢.
I'm 3 years out from Cyber Knife at Stanford. I was 62 years old at the time. I was offered any of the three options, i.e.: watch & wait, surgery, radiation.
For me, watch & wait was simply not an option worth considering. I wanted to address that sucker one way or another.
I seriously considered surgery. I felt healthy and strong. But I read many of the post-surgery posts on this forum and frankly, didn't like what I read.
I really wasn't a radiation fan, either. I remember hearing stories about radiation in the 70s. You could have died of the tumor or you could have died of the radiation - your choice. But that was a long time ago. Certainly, the technology has improved. Most of the previous posts in this thread can attest to that.
I spent a week in Menlo Park (Stanford).
Day 1 consisted of an MRI and a CAT scan to precisely determine the location, size, and shape of my little alien.
Day 2 was a day off for me and a planning/programming day for the doctors and computer technicians. I received the treatments on days three, four, and five. The treatments consisted of one 45 minute session each day. The treatment was, as someone put it on another thread, a not-event. I think I experienced a little wonky-headedness for about a week or two afterwards but that was about it.
As of this date, I feel great and no wonkiness. My balance is off, but it would be anyway because the alien compromised my vestibular nerve, not the radiation. I am SSD left side but we've killed the bastard and that's that.
Oh, and we drive 4 1/2 hours to Stanford from Redding, California.

We all understand your fear and empathize with you.
You will find peace when you make your decision but do as much research as you need to make that decision.
Good luck, and bless your heart.

[PaulW]

I had Cyberknife as well. Just over 3 years ago
Only one single 35 minute session.

I live in Australia and because Australia didn't have Gamma Knife or Cyberknife in August 2010 I travelled 37 hours from Adelaide to Munich via Melbourne Singapore, and London. Had my pre treatment visit 20 hours after arriving.
Got zapped 24 hours later and then flew home the next day.
Cyberknife itself was very easy, I almost fell asleep, in my efforts to relax and keep still.


Today I have hearing that is better than pre treatment, and remains within the normal range.
Problems I had with balance, ear fullness, dizziness, wonky head are also all gone.

I know this can be a very anxious time.. There is a light at the end of the tunnel, and if things go well life can continue as it was B.A. (Before Alien)

[mesafinn]

Paul W convinced me not to have another CT scan!

[gordy]

sandy i replied to your question, not sure if you got it or not, i don't navigate this site to well. i had gamma knife in 2007 i was 42. i used dr. wackym at fredert but he is no longer there. i now have dr, friedland  he also assisted on my gamma knife. my tumor was 1.5 at the time. if you have any questions that i can answer let me know.

gordy