Tell me about life post radiation

[jbbrown15]

I am an attorney and was diagnosed last month with a 2.9 cm AN.  I am trying to keep up somewhat with work while I wait to start my radiation therapy at Jeff in Phila. It has been a huge struggle.  My head rarely feels well, I'm always exhausted and I get dizzy spells. Steroids have helped, but I still can't work much.

I'm looking at 25-30 sessions of radiation. I expect some temporary swelling and hope for eventual shrinkage. I do have "mass effect", as the tumor is pressing on my brain stem.

I would like to hear what life has been like after radiation, whether it's good or bad. I do have long term disability insurance, if necessary. 

[Doc]

As far as I'm concerned the best possible thing you can do right now is keep as normal a schedule as you can. Unless your just unable to function effectively, staying engaged in life and your normal routine is so important.

I went through surgery and radiation. You didn't detail your planned course of treatment much, so its hard to guess what you might experience. For what its worth, I worked up until the day before my surgery and was back at my desk 10 days after surgery and a three week hospital stay...I had a near 5 cm in diameter Brain Booger.

I also had radiation (CK) six months after surgery. My treatments were early every morning. I had five two hour treatments on consecutive days. No issues what so ever. I went directly to work at my desk after each session and felt fine. You might have a different experience.

Anyway, if you're able, you should maintain as normal a life style as you can.

Take Care best wishes!
  
Doc

[leapyrtwins]

jb -

not to question your choice of treatment, but are your docs 100% certain that your AN is 2.9 cms?

The threshold for radiation is typically 3 cms and oftentimes MRI measurements aren't always accurate.

When I was diagnosed my AN was 1.5 cms and I had the choice of radiation or surgery.  I chose surgery which took place approximately 6 weeks after my diagnosis.

Post op my doc told me it was a good thing I chose surgery since my AN was actually closer to 3 cms and they would have been unable to do the radiation.

We'll never know if my MRI measurements were "off" or if my AN unexpectedly grew very rapidly - which is unusual.

Jan

[sunfish]

I had CK in March for a 1.4 cm AN.  I had a severe episode of vertigo in January, followed by a couple months of what we call "wonky headed" recovery.  By the time I had CK, my balance/equilibrium were fairly normal.  Other than some rocky side effects from meds, I was back to full-time work on March 29.  Tried to go back earlier, but had blood pressure problems.  Between March 29 and around the end of June, truthfully, I probably was better overall than I had been in the couple months pre-CK. 

Starting in July, I have experienced a long, slow slide back to where I was in February, with pretty much continuous wonky head, and balance problems.  I DO NOT attribute these issues directly to CK.  After all, I had these same symptoms BEFORE CK.  Did vestibular testing, and neuro-otologist says my balance system is only about half functioning on the AN side, and the "good" side is just slow to compensate.  Am staying very, very active despite symptoms. 

Decided that this might be my new life for awhile, and I can't afford to miss work on days when I feel pretty unsteady.  If I fall down at work or something, we'll just deal with the consequences at that time.  With that attitude, I've done better than I might have thought.  I'm a psychologist in a medium security men's prison, and I also teach college courses at night.

I would not necessarily expect to "get worse" after treatment, although I'm proof that this can be a rocky process.  I'm told that staying physically active will help my "good" side compensate, and so that's what I'm focused on.  Good luck and God bless you!

[jbbrown15]

jb -

not to question your choice of treatment, but are your docs 100% certain that your AN is 2.9 cms?

Dr. David Andrews at Jeff uses fractiionated stereotactic radiation and says that my tumor, which is 2.9x2.8x1.8 is "well within" the range that he can treat.  He has studies showing that the fractionated approach has a very high success rate, even with "larger" tumors.

I, too, was surprised that I had teh radiation option.  My decision was bolstered by a consult with the chief of neurosurgery at the Hopstial of the University of Pennsylvania, who recommneded Gamma Knife.  Both doctors said that if the radiation doesn't work, they do not believe that it will complicate eventual microsurgery.

JB

[jbbrown15]

I guess my worry boils down to: will I be better after radiation or will things pretty much stay the same.  I'm hoping that the tumor will shrink and some of my symptoms will ease.  But I worry about those 30% of tumors that don't shrink (with my treatment plan).  I wish I had  a crystal ball, but of course I don't.

I just want to get started and am getting very frustrated at my wait.  I was fitted for my radiation mask on Sept 30 and had an MRI and CT scan for planning purposes.  I'm still waiting for the doctors to complete my plan of radiation.  I know it hasn't been that long, but, quite frankly, I'm feeling sorry for myself. 

Thanks for listening.

JB

[Jim Scott]

JB ~

Hello - and a belated welcome.  First, let me state that your concerns are natural and valid as is your momentary venture into feeling sorry for yourself, which is perfectly normal in this kind of situation.  Your life is going along and suddenly, WHAM!  This AN business, which is tricky to navigate and has some unknown consequences which could be a problem, even life-altering.  Who needs this?  No one.  However, here it is.  We've all been there and most of us felt the same emotions (including an occasional bout of self pity), but it passes, I can assure you.  I can also assure you that venting is always allowed here.  As I like to state: if not here, where?  We get it.  Perhaps we can't offer you strict 'medical' advice and treatment decisions are yours, alone, but we can offer you advice based on our practical experience, our encouragement and our support as you travel this road no one wants to take.

As my 'signature' states, I had a large (4.5 cm) AN that was surgically debulked (reduced to 2.5 cm, blood supply cut off) then underwent 26 FSR treatments (total 27 gy) calculated to kill the remaining tumor's DNA.  Long story short: it all went well, with almost no deficits - and a great recovery.  In my case, the surgery ended my symptoms (the debulking spared the facial nerves).  I had no issues during the 5-week-long FSR process (unless you count tedium) and my last MRI showed tumor shrinkage and definite necrosis.  My experience is not an anomaly but I wanted to share it with you as you prepare for radiation, which, I trust, will do it's intended job and kill your AN.  We'll be following your progress and of course, we all wish you great success with the radiation treatments.

Jim

[patt]

JB ---

      I was diagnosed with a 2.7cm Acoustic Neuroma last March.  After much research, I decided to be treated with FSR.   I am very happy with that decision.  I had 30 treatments and completed them in July.  I had a check-up just yesterday and a great report.   My tumor has decreased in size and my hearing test proved that the radiation didn't harm my hearing.   I was very concerned about my hearing in my Right ear, because I have loss of hearing in the Left ear from childhood.
      The only side effects that I had from the treatments were --- some days I got very tired, loss of some hair, but that didn't bother me, because I have a lot of hair.  I did have a full feeling in my head at times, but NOT a headache.   I have to say that I was a very lucky person to be treated with FSR and had a wonderful medical staff that got me thru the whole thing.   I had great support from my family and friends, which helped a great deal also.
        I wish you well and will be back to follow your journey.

       Take care --
              Patt from Minnesota

[leapyrtwins]

JB -

glad your confirmed radiation is an option for you.  Just wanted to make sure you'd done your homework   

Good luck with the FSR,

Jan

[mk]

I guess my worry boils down to: will I be better after radiation or will things pretty much stay the same.  I'm hoping that the tumor will shrink and some of my symptoms will ease.  But I worry about those 30% of tumors that don't shrink (with my treatment plan).  I wish I had  a crystal ball, but of course I don't.

Hello JB.

I also had a 2.9 cm AN, treated with GK two and a half years ago.
I won't go into the radiation vs. surgery discussion, as I am sure you have read plenty already, but I will just give you my personal perspective based on what I have read and what I have experienced.

Surgery addresses the problem of compression of the brain stem and other structures (like 4th ventricle) and may generally alleviate symptoms such as numbness that are attributed to cranial nerve compression. On the other hand, it can create other problems, like facial nerve weakness, headaches etc.

Radiosurgery at best, will keep things the same. What I mean is that the less symptoms you have going in, the more the chances that you won't have many problems post-treatment. There is a big chance that you might experience some transient problems, due to swelling. However, you cannot expect already existing symptoms to ease, at least not in the short term. Especially balance, wonky head etc. I have been told that even if the tumor shrinks, it may cause symptoms (like pulling back on nerves), while it is doing so.

One of the reasons why I went with radiosurgery, is that I was almost symptom free (except from the facial numbness), and I wanted to keep it this way for as long as possible. I still have the same symptoms as I had prior to treatment, with nothing much having changed (other than diminished hearing). I have a very busy life, and I haven't had to take any time off. However I probably would not have followed the same path if I had debilitating problems such as vertigo, headaches etc.

What I am trying to say here is that if you are looking for immediate relief, unfortunately it is not given that radiosurgery will provide it. It may, if the tumor shrinks, but this would be in the (very long) term.

We understand that the wait can be too long and frustrating. Feel free to ask any other questions.

Marianna

[Tumbleweed]

Hi, JB:

The odds are that, in the long term, your symptoms will not improve. They may get worse in the short-term (roughly within the first 6 to 12 months following treatment) due to the tumor reacting to the radiation and swelling in response, but those side effects are almost always transient and disappear over time.

I didn't have the type of FSR you have opted for but had CyberKnife (CK) instead, so that's all I can relate from my personal experience. First let me say that I am 100% convinced that radiation was the right treatment for me and I feel incredibly blessed that it was an option for me because it gave me my life back. But it was a really rough ride getting to where I am today. I had an unusually strong reaction to the radiation treatments and was profoundly exhausted and about 15 to 20% more dizzy (subjectively) immediately after my treatments ended. The exhaustion took two months to moderate, the dizziness 6 months. I felt like I was damaged for life during that period, but nothing was farther from the truth. In fact, after six months my balance began to improve dramatically and my energy level began to soar. I also experienced some unusual benefits from the treatments. First, my tinnitus immediately became dramatically reduced in level (you should not expect this to happen, as I know of nobody else who has experienced this odd and welcome result). Second, my balance has actually improved around 75% over the past couple years since I was treated; statistically speaking, only about 25% of patients who receive CK at Stanford experience an improvement in their balance over time. Also, although I lost around 10-15 dB of hearing in my midrange and lower-high frequencies since getting CK, I experienced around the same amount of improvement in my bass frequencies over the same time period (this improvement was also an unusual result that very few patients ever see).

As for what you are likely to experience: you may or may not be fatigued for a few weeks after your treatments. Over time, your hearing may (or may not) decrease on the treated side. Your balance is not likely to improve; but if it gets worse, your balance function will very likely return over time to where it was at right before you were treated.

Your doctor can tell you whether or not he thinks your facial nerve might be affected by the treatments. But for your size tumor, I would venture an educated guess that your facial nerve function will be better preserved by getting FSR treatments than with having your tumor surgically removed.

The most important thing is to get the darn thing treated before it becomes any bigger and does more damage. And trust that should you have a bumpy recovery, you will feel better over time.

Best wishes,
TW