Feeling conflicted with some second thoughts; CK in 22 days

[free2be]

AN and radiosurgery friends,

It's 22 days until my Stanford appointments (not that I'm counting). In the last two weeks I've had a series of events in my life that seem to be making me have second thoughts, or at least temporary ones. I am seriously wondering if I should try harder to try some natural / nutritional approaches to stop or shrink this thing before I have radiation. I keep thinking that once I get radiated, there's no going back and what ever symptoms or effects I have...I'm stuck with at least temporarily. It's not like a pill I can stop taking because of the side effects. Not everyone believes in natural remedies and I don't know if I am in anyway convinced, but am wondering if it's possible. It's partially because of my little 9-year-old friend who has an inoperable nasty brain tumor that traditional medicine is not offering much hope for; so, they are attempting nutritional and alternative treatments. It just makes me wonder. His tumor is in the same glioma family as what my mother died from; I'm sure that doesn't help along with that minuscule chance of radiation-related malignancy of the same type. It's just all gotten to me in the last two weeks.

My Naturopath, who is also treating little Wylie, has found "some" evidence of a couple of possible alternative treatments. One is Boswellia serrata extract from Frankincense. Another is something in asparagus. I am taking several things now, but not currently with any hope of controlling the tumor.

Am I crazy to even be thinking this way? I'm not sure anymore. I've been so stressed about little Wylie and other things. I don't know if I'm thinking clearly. I guess I'm just scared and would prefer to have some revolutionary thing take care of it, or prayers, and not have to radiate my head. I don't have concerns about the specific choice or place, if I must, I'll do the CK and do it at Stanford. It's just wondering, wishing, praying maybe, that something else might work. I know it's a long shot and I don't know really how dangerous it is to wait...for a while. The ENT here seemed to want me to be moving forward directly; Dr. Chang didn't sound like he was concerned about the proximity of my tumor to the brain stem. So, I don't know.

I already have plane tickets, etc., it's all set up, it's not like it is the best time to have second thoughts and I can't even determine within myself how serious my second thoughts are...but, they're there.

Connie

[PaulW]

There is no reason why alternative medicine cannot compliment your CK Treatment.
The tumour will still be there post CK, any benefits from alternative medicine will occur post CK as well.

[Jim Scott]

Connie ~

Your doubts and fears as you approach your radiation treatment are quite normal.  I'm not a doctor, however, I'm very skeptical about 'alternative' treatments involving foods and supplements as a means of stopping your ANs growth.  How you approach treating your AN is entirely up to you, of course, but the tone of your post seems to indicate a desire to justify not having the CK treatment as scheduled, even though you know you should.  Of course you don't want to have radiation beams shot into your head.  Who does?  Your borderline-desperate hope that this won't be necessary is perfectly understandable.  However, miracles are decidedly rare and the reality is that, no matter what you do, the AN will continue to grow, making treatment more urgent and possibly more difficult the longer you postpone it.  I'm confident that you'll be able to surmount your fear and undergo the CK, as scheduled.  If not, the choice is yours to make and of course, anything is possible but I would hate to see you postpone doing what is right and necessary on some thin reed of hope, only to be disappointed and possibly in worst shape, later.  Try to relax, take some deep breaths and think as rationally as you can, putting all the 'what-if's' aside as you move forward to your scheduled CK at an excellent facility with one of the best CK doctors in the country . 

Jim

[pjb]

We all understand your fears I chose surgery I thought it best to have it removed completely and not to worry about it ever again.. but I just found some residual was left and now I might have to have radiation anyway ?? I have read so many good posts about CK and Dr. Chang and I am sure with everything that is going on plus you committed to a date it is only understandable that you have fears.. But I am sure that everything will be just fine and it is best to have it done now like Jim said it is small and treatable and if you wait it will only get larger and more complications can occur.

My thoughts and prayers are with you.

Best Wishes,

Pat

[leapyrtwins]

Connie -

IMO you should not do anything that you are not sure you want to do.  You don't want to second-guess your decision on something as important as treatment of an acoustic neuroma. 

When I finally made my decision to have surgery I was 100% sure that it was the right decision for me - and I was 100% sure that my doctors were the doctors I wanted treating me. 

I went into surgery with a wonderful sense of peace and calm and I've never looked back. 

You can always reschedule the CK in the future if you want to, but once you have it done you can't change that.

I'm not saying that your decision is a bad decision - just that IMO you need to be 100% confident that it is the right decision for you.

Best,

Jan

[CHD63]

Connie .....

I have to agree with parts of what both Jim and Jan said.  It is most unlikely that supplements will change the course of your AN's growth (or not growing ..... some do not grow for years).

I also feel that you need to be completely confident that this is the right treatment decision.  You may, indeed, be in an emotional turmoil because of Wylie and your mother's history ..... but you need to know in your own heart and mind that what you are doing is right for you ...... whether that is waiting and watching longer or going through with a treatment.

Many prayers for peace with your decisions.

Clarice

[leapyrtwins]

Oops.  Forgot to address the holistic/alternative approach 

Connie -

there is no alternative treatment for an acoustic neuroma, although many wish for that.  If it were that simple, none of us would have opted for radiation or surgery.  All the natural healing in the world isn't going to a) stop your AN from growing or b) shrink or get rid of it.

With the size of your AN, you can watch and wait - and if you're lucky you can watch and wait for a long time.  There are several on the Forum who have been watching and waiting for years; Mickey comes to mind.

The important thing with watch and wait is to monitor your AN through the occasional MRI - you doctor can recommend the frequency - and to watch for a change in the severity of your symptoms.  If something changes - and it's not for the better - head to your doc ASAP. 

Jan

[Tisha]

I agree with everyone.  Your AN is the size that you do have the alternate of watching and waiting.  But honestly, I don't believe in the holistic approach to stop the growth.  When I was considering all my options, Dr. Chang told me since I already had symptoms, they would just get worse.  Plus, I'm not good at W&Wing either.

But, when the decision was made...I never looked back or doubted what I was doing.  Oh, maybe a little, but not much because of what Dr. Chang said.

I think you have to go into this with the mindset that all my not be perfect after CK, and symptoms may come and go, and some days you might not feel so well.  But you have to be in the place that you won't second-guess yourself if it happens.  I never do.  This is because I fell that things would be so much worse if I hadn't done it.  I would beat myself up if I didn't have it, and my hearing continued to go, or balance got worse because of fears.

But, unfortunately, this is one of those few life decisions that only you can make.  My DH helped me come to that decision...but it had to be one that no matter what...only I could take responsibility for what happened.  Big Hugs. 

[ppearl214]

there is no alternative treatment for an acoustic neuroma, although many wish for that.  If it were that simple, none of us would have opted for radiation or surgery.  All the natural healing in the world isn't going to a) stop your AN from growing or b) shrink or get rid of it.

In line with what Jan has shared, there is no medical proof that alternative treatments help with AN's.  As others have noted, there are some that help folks feel better but for the actual treatment of AN's, unfortunately, there are none proven.

Connie, we always tout around here that no one should second-guess their decision chosen for treatment. You are doing what is best for you and your particular situation for handling the AN.  Funny, I was at a recent ANA Support group meeting.... there was a woman there that had AN surgery almost 15 years ago... and she looked at me, having had CK almost 5 years ago and questioned about how things are done nowadays.  My response back to the group was this..... "I did what was best for me at the time for my situation.  In another 10-20 yrs, my treatment may be deemed 'outdated' and newer/advanced treatments may be available, yet, I cannot look back in hindsight for what I opted for treating my AN."

Nerves/anxiety is VERY normal going into ANY medical treatment.  If you weren't feeling this way, then I would worry even more.  You are doing what you feel is best for you and your AN journey and pls remember that we are ALL here to help you along.  As one that had CK, I will make a bet with you that once you are done.... you will report back that "OMG!  It was a breeze!  Had the treatment slam, dunk and time for the stinker to die".  Care to take that bet?

Hang in there! We're here for you!
Phyl

[mk]

Regarding alternative therapies, you should check out "Tumbleweed's" messages. He is one of the most knowledgeable people in the forum on alternative/hollistic treatments, and he had devised a very thorough and well thought out regime (his first post). But like everyone else has said, there is absolutely no evidence that ANs can be cured following alternative therapies.

On the other hand, there are plenty of stories of W&W, where tumors have remained stable for years. Given the size of your AN, you may be able to wait for a while, if you are uncertain about receiving treatment right away. And a healthy life style certainly will not hurt.

Marianna

[suboo73]

Connie,

As a watch & waiter, i sometimes wonder - should i stay or should i go and have treatment?
Would it be easier to have treatment now, while the AN is small, or should i wait until other/different treatments come along?
I was diagnosed in Oct. 2008, so i have been here about as long as you. 

I decided (finally) that as long as my AN is stable, and no weird, additional symptoms, i will stay in W & W for awhile.
This decision fits me for now.  But if things change, i will reconsider my options. 
If  i had a choice and had to have treatment soon, i would definitely have Stanford, Dr. Chang and CK at the top of my list.

This AN journey - it is not very easy i know.

We are all here for you.
Stay strong.  I know you will do what you need for you.

My thoughts and prayers are with you and your family.

Sincerely,
Sue

[cobbler]

Thanks for this post Connie! Kind of having the same second thoughts as well.

Jim, I know you are not a doctor, but your advice is always helpful! As far as the size of an AN, what do you think is the "crunch" time for removal? Or maybe it does not depend on size, but location??

Thank you to everyone who posts! This site has been a God send for me!
Misty

[ppearl214]

Jim, I know you are not a doctor, but your advice is always helpful! As far as the size of an AN, what do you think is the "crunch" time for removal? Or maybe it does not depend on size, but location??

Hi Misty

I am not Jim (I'm shorter than he is....) nor am I a doctor (and did not stay at a Holiday Inn Express last night...), but from what I hear (with my good ear) is this..... it all of the above and thensome.  Location of tumor (ie: is it pressing against the brainstem, etc)..... the size of the growth and rate of growth (ie: is it a slow grower or faster... mine was faster)...... are you symptomatic and are the symptoms enhancing........ just some of the issues that I've learned along the way that some docs note for making the decision re: which AN treatment to do.  Not sure if this helps.

Phyl

[Jim Scott]

Misty ~

My fellow moderator (and fellow non-physician), the intrepid Phyl, beat me to responding to your question regarding the size parameters for an acoustic neuroma that might make it unsuitable for irradiation.  I don't mind a bit because her information was sound, just like we've all come to expect from Phyl.

As in real estate sales, location is always a crucial part of the matrix that determines the best treatment for an acoustic neuroma.  So is the tumor's growth rate and, if you'll forgive the aphorism: 'size matters', with 3 cm being the usual limit for considering radiation, although that number is not absolute.  Generally, if and when your symptoms begin to have a deleterious effect on your quality of life, the AN must be addressed.  To state the obvious (I do that a lot) the sooner, the better.  However, ultimately that decision rests with you, alone.  As always, we'll support that decision, because we know it's difficult and we respect both your intelligence and instincts. 

Jim
 

[free2be]

Okay…I guess it is time that I chimed back in here. First of all, thank you for your responses and attempts to help. This has been difficult for me because of all the research I have done for our little 9-year-old friend with his nasty advancing quickly brain stem glioma (infiltrating astrocytoma).

There are numerous mainstream medical journal articles indicating that the herb Boswellia (active ingredient Boswellic Acid) shows some ability to stop and even shrink the growth of brain tumors, but most specifically gliomas, meningiomas, and even leukemia. There are ongoing clinical trials using Boswellia on Glioma tumors, an upcoming one at Cleveland Clinic, etc. So my attempt to apply this to my own tumor type is not unfounded. However, without more medical expertise to understand the growth factors, protein types, etc. relevant to ANs, and the growth inhibitor properties of Boswellic Acid, I have not been able to find a specific link that gives me enough confidence at this point to trust that the Boswellia will work for my AN. (Having been a medical writer and editor at CDC, etc., I have enough ability to read through these things and get something out of them, enough to keep looking, but not the expertise for these complex proteins and inhibitor elements, which in this case is frustrating for me). I still believe that it is very possible that it could work. However, since I have been advised to get my AN treated (because of its continued growth (1) and its location (2), nearing the brain stem, I have pretty much decided I need to move forward with CK. I was very close to canceling temporarily to give the Boswellia a chance.

IF I had started taking Boswellia a year ago, then perhaps, just maybe, I could be avoiding CK now. Maybe not, maybe. I won’t ever know. I was watch and wait for over 1½ years. I did not mind that a bit. If it was okay, I was okay with it. If I knew then what I know now, I would have started taking it then, before it got larger and close to the brain stem. Perhaps someone else will be able to try this before their tumor grows too large and will find it beneficial. I hope so. I believe that there are natural properties, natural treatments, on this earth that will someday be discovered to work on our ANs. I believe that what they are finding about Boswellia in the treatment of Gliomas can work and will someday be incorporated into some expensive drug by a major pharmaceutical company so that they can make millions treating gliomas with this herb.   

Boswellia has other medicinal properties including being a very effective anti-inflammatory agent; so, I will continue to take it for that reason. It may help the post-radiation inflammation. It is being used for arthritis and other inflammatory issues as well as other conditions.  I have accumulated probably 100s of links to these medical articles and other sites, if anyone wants more information. This link is from Sloan-Kettering Cancer Center: http://www.mskcc.org/mskcc/html/69149.cfm

So, that is where I am! I am comfortable with Dr. Chang and Stanford. I am okay with the process of CK as much as I can be about getting my head nuked. The procedure itself doesn’t concern me; it’s the after effects and the small statistical chance of malignant changes in the future. I’m probably more sensitive to this right now and because of my mother’s brain cancer. Dr. Chang did put that statistic into perspective well by noting my chances of breast or colon cancer in my lifetime. Much higher! (I have some other updated statistics, AN incidence rate, directly from Dr. Chang, which I will share in another post).

So, I will continue the Boswellia to help with inflammation and perhaps ward off any negative cellular changes. I am doing a very healthy diet and have been for several months in preparation for treatment. Exercise is the one thing that I am lacking and with my Addison’s disease and fatigue and the stress I’ve been dealing with, it has been difficult to get that going. I’ve been swimming a little. At this point, I will be going to the West coast in about 10 days to see Dr. Chang and start CK at Stanford on the 29th.   

Best,
Connie