Radiation Info needed for upcoming conference that I am a presenter

[ppearl214]

Hi all

The ANA is aware of this new "discussion" and told them I would put this here in the hopes of you all providing inputs as I need your help.

I have been asked to do a "talk" at an upcoming radiation conference, audience is radio-treating professionals (I know, I know... I have to do the "Marcia Brady syndrome" and think of the audience sitting in their skivvies while I do this! )

Anyway, I will be presenting myself as an AN patient, who had successful radiation (I had Cyberknife/CK almost 5 years ago) and will be sharing not only my experience as an AN patient, but the inputs of those that I'm involved (here on the forums, support groups, etc) about life as an AN'er who had radiation and some of the successes/concerns/issues that come our way... good and not-so-good. 

I will be presenting a 20 min talk about how we do our research into checking options, esp radiation... side affects we may endure, and most important of all (the ANA is with me on this last topic....).... "follow up care."  Many show confusion as to whom they should do their follow ups.  Many travel for treatments (example:  many travel to Stanford for CK, fly home and have to do follow up locally....) and trying to obtain post-radio care locally (after traveling for treatment) can be confusing as to how the follow up should be done.

So, with the ANA's support, I start this topic here to help collect some of the inputs for those that research/have had/post-treatment for AN radiation options..... any and all inputs appreciated as I'd like to be able to present first-hand accounts of the good, the bad and the not-so-"hip" happenings that we have all run across.  I have heard so much over the 5 years I've been affiliated with this forum (yes, THAT long, folks!) and have a good idea of what to put together from past inputs and would appreciated inputs now from you all.

Thanks gang!
Phyl

[free2be]

Phyl,

I have some ideas, especially since I just did CK long distance and still haven't quit figured out the details of follow up. Let me think on it  and compile some thoughts. I'll get back to you.
Connie

[ppearl214]

Connie,

thank you!  I really appreciate any and all insight, esp. for post-radio care (esp since that is now a more-recent situationfor you.......). 

For those of you interested in helping but you may not feel comfortable posting it here, please know my inbox is open, all inputs will remain confidential (public and in PM inputs appreciated... no names will be mentioned during the presentation) and please accept my appreciation for your contributions. This is to help the radio-treating teams understand what we endure in the beginning, during treatment and most of all, post-treat.

thanks again!
Phyl

[annamaria]

Not that this necessarily adds any insight, but I am planning treatment out of state (Md) and I an now earnestly looking to find a local brain neurologist in-state (NJ) that can help me post-treatment.

It's not easy to set that up.

Challenge 1: find a list of reputable, in-state, up-to-date, not-too-old-not-too-young not-too-academic-not-too-clinician doctors that focus on brain tumors (not other brain disorders)(btw, there are about 140 different brain tumors) (and, god know how many other brain disorders, including traumatic brain injuries, such as car accidents) -- for example in NJ (where I am) there are 3 clusters of brain tumor centers -- NYC has a bunch, but to get to see one you'd travel 2 hrs in 2 hours out as a minimum, noisy, crowded, stressful commute, everytime you need something -- so they are out for me. Maybe that gives you a list of 20.

Challenge 2: Find that subset that are covered by insurance. Maybe that gives you a list of 10.

Challenge 3: Find that subset that want to take you on as a patient without operating on you or radiating you -- namely those that truly want to be impartial advocates. Maybe that gives you a list of 6

Challenge 4: Visit 3 or 4 of them and find that one that you feel you like and/or trust and/or find cares about you and/or is truly knowledgeable. Maybe, hopefully, that gives you a list of 1 or 2.

I've gone thru these four steps and I am now at step 4. I've visited 2 in NJ so far. One I like; one did not like at all. One I'm seeing tomorrow.

(thankfully I do not need insurance referrals to go thru this selection process, otherwise it would be much more difficult)

Annamaria

[PaulW]

Some thoughts.

Continuing advances in the technology leads to confusion for patients whether Brand A is better than Brand B or Brand C.
If Brand A and B are equivilent in results, please recommend those machines and treat us with that.
Do not recommend a 15 year old Brand C, designed for general purpose radiotherapy, that is in your hospital
If you want more AN patients to be treated by RS, please give us the best options so we can speak positively about the experience.

Single Fraction, multifraction, Radiotherapy over 30 fractions.
Dosage differences, isodose line differences.
Maybe all radiosurgeons should get together, look at how every machine works, and provide an overall rating for each machine, depending on the tumor size.
A survey on dosages and Isodose lines, Iso centres (if applicable) for each machine.
What is the concensus on Best Practice by radiosurgeons for the treatment of AN... I would love to know and maybe they would too...
 
Some possible survey questions.
Example (to be done for all tumour sizes and each machine type)
For IAC AN's

Hearing Preservation
Facial Nerve preservation
Damage to surrounding tissue/nerves/blood vessels/brain stem
Avoidance of critical structures brainstem, cochlear, optic nerve
Patient discomfort/side effects
Overall total radiation dosage to patient. (increase cancer risk), which machines give maximum radiation to the tumor, and the least to elsewhere)
Real World Machine accuracy. (not mecahnical accuracy)

We probably only want to be treated by the top few machines, with a radiation dose that provides 95%+ cure rate, with the least side effects, and the lowest total radiation dose to the rest of our head and other critical structures.

Should the ANA do a survey of Radiosurgeons for their preferred options?


Watch and Wait versus Microsurgery versus Radiotherapy/surgery.
What is the best management practice for AN? Too much conflicting information here.
All three methods have their place, and I would argue that each method is the best depending on your AN, your age,  and your symptoms.

Most medical literature focusses on treating the tumour, hearing preservation, facial nerve function etc.
I think there needs to be further studies on the ongoing psychological effects of an AN.
While around 70% of AN's can remain untreated in peoples heads, the symptoms of AN can be very wearing.
Are we psychologically better off, having small symptomatic AN's treated with Radiosurgery early? especially for patients younger than say 60?
While we look at the physical risks of early intervention for AN, I believe further work needs to be done on the long term untreated psychological effects of AN.
Early radiosurgical treatment of small symptomatic AN's may provide significant long term psychological benefits to the recipient, which may outweigh the physical downside.

I had my AN treated with Cyberknife 8 weeks after I noticed hearing loss, and 3 weeks after diagnoses.
Went back to part time work immediately, and fulltime work within two weeks.
Mentally I feel great. I have had my AN experience, I am now pretty much over it. If the dizzyness stops I am pretty much back to my old self.

Any symptom I have, now is caused by my tumour changing as it dies (well thats how I see it)
While untreated every symptom I would have was caused by the tumour growing.
One is a positive experience the other is a negative.

While early intervention of a small symptomatic AN would seem rash and unnecessary by many medical professionals.
For my mental health the decision was 100% the right one. I am out the otherside pretty much unscathed by the whole experience, with hearing mostly in tact.  (GR 1, 100% speech discrimination)

Reporting
How institutions report on AN's make it very difficult to compare real results.
I think the ANA in conjunction with medical professionals should construct a standard reporting format, which will ultimately assist in identifying the best methods for treatment of an AN.
Despite tens of thousands of people diagnosed with AN's worldwide every year, there is a lack of consolidated knowledge to assist in identifying the best methods.
Standardising the reporting of AN's and possibly a worldwide reporting database would assist in this cause.
Standardising reporting on AN radiosurgery, and knowledge sharing could lead to increased uptake of this method of treatment.


Anyway thats my two bits worth...

[nanramone]

I live in Indiana, so flying to Pittsburgh to have outpatient GK was not inconvenient.

Back here in Indiana, my records are with my regular GP, the ENT who found the AN in the first place, the neurologist who runs the dizziness clinic where I went for vestibular therapy, and most lately, I found a radiation oncologist (one block from my house!) who has experience with GK and Novalis in treating ANs. My first 6 month MRI report will go to this radiation oncologist, along with being sent to Pittsburgh. This new doctor here was more than happy to see me without treating me, and will communicate with Pittsburgh on my behalf.

I think this process has gone especially smoothly, in my case.

Nancy

[ppearl214]

You all RAWK!!!! Thank you!  VERY insightful, VERY helpful and right on the money for the info I seek. Please know that I am looking to help be a "voice" of AN'ers to these radio-treatment teams truly understand what it means to walk in our shoes, esp. post-treat.

Truly.......... with deep appreciation... thank you!

Phyl

[Cheryl R]

Annamaria.  Have you looked also at a neurotologist for post treatment care?      That is what my surgeon is and is located in the otolarynology dept with his skull base surgery.     This type of dr should also have the knowledge for post radiation treatment.    You may have done this already but only saw mention of a neurologist.     Several of the AN surgeons are this speciality.
    God luck in finding the best dr for you.                            Cheryl R

[6pick]

I think PaulW is right on the money with standardization. It's what would help us make decisions about treatment. As is said over and over again on this forum, this is a personal decision and we are the only ones who can ultimately decide on W&W, microsurgery, or radiosurgery and if the latter, which type.

The only thing I would add (having been involved in the study of mathematics to some degree and tend to lean in that direction in the understanding and communication of certain things), please standardize the measurements of these alien invaders.

[ppearl214]

thanks all! well done!

6pick, as you may know, trying to "standardize" is very difficult to accomplish since everyone's "unique" situation may warrant different approaches. Now, there is a "somewhat" standard for radio noting approx 3cm as a cut off point for doing radio treatments, although I have heard of some that did have radio with AN's over 3cm. Rare to treat as such but has occurred.

To me, the key is communications by the treatment teams on the front end (and this includes surgery as well) re: follow up care.  I was lucky that my team informed me on the front end (during my treatment planning session) whom I should follow up, post-radio.  Many teams (yes, incl surgical) are not truly advising this on the front end, esp for those that may travel for treatment. I know of many that have traveled to have radio done (and yes, surgery too), but upon returning home, should there be issues, folks have scrambled, trying to make the right choices as to whom they should follow up. To me, treatment teams need to take into consideration their patients home locales, do they have access to proper emergency and follow up care based on where they live and in some cases where they don't, be able to provide necessary info (again, on the front end) to help these patients know where they should go for emergent/follow up care.

Just my 2 cents and would love to hear from those that may have run into this... even if negative.  If not comfortable noting here in this thread, my inbox (PM) is always open.

thanks again!
Phyl

[sunfish]

I sent this as a PM to Phyl on the CK site, then decided to post publicly here.   I chose to have my CK locally, with a less experienced team overall, because I thought followup would be better.  My team made it fairly clear that I should follow up with neurosurgeon.  His office staff are terrible - I have sought help there in June, and they admitted they lost my record/doctor's orders, which delayed referrals and testing when I started having issues.  I sought help there in late August for ongoing balance issues.  They said they would call with MRI date and followup visit.  I never heard from them again.  I'm an intelligent person, so I said to myself, "OK, if these folks aren't going to be all that helpful, let's be proactive and find someone who will."  I had my primary care doc refer me for a much belated second opinion at another facility.  I will now only have the original CK team do the followup MRIs.  It will be interesting to see if/when they every contact me about that . . . neuro-otologist at "other" hospital says to call original CK team in December or January if I haven't heard anything.  My concern is for people who are less sophisticated/savy consumers of health care, and how in the world they would ever navigate this system!

[ppearl214]

Sunfish

Got the email and truly appreciate what you (and all the others) have shared here.  This is most helpful to me as I'm drafting the outline for the conference and know that I am intending to help be a face/voice to the professionsals that treat us, to help them understand what it is to walk in our shoes.

thanks again all!
Phyl

[Shan1014]

Hi,
Not sure if you are still looking for info. or not ... or even if this is the type of response you were looking for, but I thought I would add in.

I am 6 weeks post-FSR with the Novalis Tx.  I had my treatment at Phoenix Good Sam. Hospital with Dr. Kresl. 
Although I initially liked Dr. Kresl .... the overall system has been frustrating. I know it is a big hospital but the communication system places you so far away from the doctor .... I have gone straight to my ENT for questions. 

The second issue is that both my doctor and his support staff have really seemed to make me feel like I have "made-up" symptoms or that I shouldn't be feeling that way.  Basically, they have made me feel like there shouldn't be any side-effects with this.  I have a fairly large tumor that of course is swollen.... I'm not sure how they expect that!

I know these are hard to include in your talk but I in my situation.... the compassion has been missing.  The doctor wouldn't give me more then a week off when he signed my "return to work" forms which cost me the ability to get any short term disability.  So I have been working outside in hot weather (AZ), trying to motivate 13 year olds to exercise (P.E.) when I feel awful.  Anyway.... until yesterday.... there hasn't been a day yet that I should have been at work.  I just felt like I deserved a little trust in what I could do and couldn't do. It has been disappointing. 
Thank you,
Shannon

[ppearl214]

Shannon,

this is exactly the type of info I seek..... thank you. I'm sorry to hear of what you have endured and certainly hope things improve soon!  Hang in there and try not to push yourself too hard if you don't feel good.

Phyl

[Sefra22]

Hi Phyl,
I traveled for Maine to RI to have my GK with Dr. Noren. There is no place in Maine that offers CK or GK. Because I had to travel I chose GK because I could have it done in one day.
I was sending my follow ups to Dr. Noren until last year, when I was looking into a BAHA. The doctor who did my BAHA surgery is a neurotologist, so I asked him to
look at my MRI's, and now he follows my progress.

Good Luck,
Lisa