ANA Treatment Options Bias

[PaulW]

Over the last 6 years, I have been an avid supporter of the ANA and I have felt that the information on this website has been exceptional.
Information in my view has been balanced, and encouraged people to seek the choice that suites them
I am concerned however that some changes to the website no longer represent balanced information about Acoustic Neuroma Treatment, and there is now considerable bias towards microsurgery, and the ANA appears to have an opinion of a treatment modality.
Can we please get one of the prominent radiosurgeons on the medical board to review statements on the website?
As well as someone on the medical board that is an advocate for W&W?
If there are differing opinions on the medical board we should have the opportunity to evaluate those differing opinions.

Of particular concern is the area of treatment options
https://www.anausa.org/pretreatment/treatment-options-summary

1. There is a topic of "Typical Advantages of Microsurgery over Radiation"
There is NO Disadvantages of Microsurgery listed
Facial Nerve complications, hearing and balance nerve complications, CSF Leaks, Eye problems, infection risks and death. Why are disadvantages of radiation listed, but disadvantages of microsurgery totally omitted?

Mortality rates in the US for AN's was estimated to be 0.5% in a 2011 study
http://www.ncbi.nlm.nih.gov/pubmed/21856684


2. Under Advantages of Microsurgery over radiation it states
"Size and/or position of the tumor may make radiation inadvisable, due to post-treatment swelling.  Tumors larger than 2.5 to 3 cm in size are not recommended for radiation."

The International Radiosurgery Association recommendation is for tumors less than 3cm
http://www.irsa.org/AN%20Guideline.pdf
I cannot find any concensus statement recommending a 2.5cm limit.
The risks of treating tumors over 3cm are not just caused by tumour swelling. There are increased risks of radiation necrosis, and damage to other nerves and brain changes.


3. "Younger age is generally another determining factor for choosing surgery."
A younger age does help with recovery from microsurgery. However the risks of microsurgery need to be weighed up against the risks of radiosurgery. The risks of radiosurgery are reasonably well understood, based upon over 40 Years of radiosurgery, Radiation treatments for the adenoids, and ringworm on children in the 1950's and 1960's plus radiation studies on Hiroshima and Nagasaki.
This is a pretty strong statement and may sway people to microsurgery without fully considering radiosurgery.
The ANA should present as much information as possible to help people decide and not make statements like this, without quantifying risks of both microsurgery and radiation. The discussion on the risks of microsurgery are completely missing.

4. "Subtotal tumor removal may make surgery the best option, followed by radiation."
Why is this the best option? Please justify this statement. Most subtotal removals do not need radiation.
This is listed under advantages over microsurgery over radiation. Does that mean the best option for tumours less than 2.5cm is radiation after surgery?


5. "Some physicians do not recommend radiosurgery for large tumors if there has been prior radiation treatment in the same area."
Really? How many people have had radiation to the brain and cant have radiation for an AN?
I would doubt that 50 people in the history of radiation worldwide would have had radiosurgery rejected as a result of another radiation treatment that was not from an AN or NF2 related. Is this really worth mentioning?


I also feel that Watch and Wait has also not been represented correctly.


When to Seek Microsurgical or Radiation Treatment
"If there is tumor growth."

Many tumors grow very slowly, and can be observed safely for many years or decades.
This statement makes it sound like any growth requires treatment. I do not believe this to be correct.


"If the tumor grows to 2 cm or more, treatment should be considered."

Many a person has had an AN over 2cm observed and had it remain stable, oscillate in size or even permanently shrink. With careful monitoring, observation can be continued if a person and their health professional chooses. An 80 Year old with a 2cm tumour would be a good candidate.
Here is a recent paper where two people aged 29 and 28 were on W&W and had their tumor shrank from 29mm to 22mm and the other  from 27mm to 20mm. While this maybe unconventional being on W&W for tumors so large and people so young, it does show that W&W has a place in larger tumours.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4882965





"An increase in symptoms may indicate that the tumor is growing. Symptoms include increased hearing loss, tinnitus, increased balance issues and numbness in the face."

An increase in symptoms does not necessarily mean tumor growth, in fact increased hearing loss is par for the course and happens independently of tumor growth. As a result of this statement people may seek treatment after increased hearing loss when watch and wait may still be appropriate or worry unnecessarily

 
Thank you

[operarose]

Thank you, Paul for your post. It is very informative and helpful as I Watch and Wait. My doctor also said that a deterioration in hearing is NOT necessarily evidence the tumor is growing, but could be a result of secretions from the tumor itself affecting the cochlea.

[ANGuy]

PaulW,

I think you are wise to point out these issues of bias.  Those same biases, and others, are present in these forums as well, but at least there is the caveat that the members aren't medical professionals (though some sure seem to think they are).

Sometimes this place sounds a lot like the bleeting sheep "Four legs good, two legs baaaad"...

[Director]

Paul,

ANA always strives to avoid bias and to provide the best information about AN available. I am sorry that you perceive a bias towards surgery; it is certainly not the case that ANA is promoting surgery over other options. In addition, none of the information you quoted is new to the website. I would have welcomed a conversation or email contact from you directly.
If you are interested in having a discussion, you can call me at 770-205-8211 or email me at director@anausa.org.
 
In the meantime, I would like to remind all ANA Discussion Forum visitors that ANA does not attempt to direct AN patients towards any particular treatment or physician.
Allison Feldman, CEO, ANA

[PaulW]

One of the reasons decision making is difficult with AN's is because there really is no right answer for many of us.
There are pros and cons to Watch and Wait, Microsurgery and Radiation.
For this reason, we really need to make a decision that is informed and is right for us.
I have seen many people regret their treatment decision.

Regretting Watch and Wait because their tumor grew, and they lost their hearing, or blaming facial nerve problems for a more difficult operation as a result of tumor growth

Regretting Radiation because of balance problems, increased symptoms, and sometimes a more difficult surgery
Or the ongoing stress of what might be.

Regretting Surgery due to crippling headaches or facial paralysis.

Every treatment option can be good or bad and we toss the coin in the air to see what we will get.
Depending on your personal situation, you may lean towards one option or the other.
There is no right or wrong answer. If the bad does happen, if we are fully aware of the risks from the start, and we chose that option, we are more accepting of the outcome. Its why it is so important for us to make our own decision.

[Blw]

It might be a good idea to do a medline search and post some review articles regarding surgery vs radiation. I read many of those before making a decision. The scientific literature will be the best source of unbiased information since the articles will be peer reviewed, and there will be pro and con for every treatment.

[Blw]

Yes, I'll post themas pdf files if I can figure out how.

[Director]

HI Cityview- I will reach out to Dr. Link and ask!
Allison

[caryawilson]

BLW - would you mind posting the links to the medline searches? 

I know when I was doing research it was hard to draw conclusions due to statistical issues with the data such as a small sample set, too long of a sample duration, failure of the patient to follow-up years later, etc.  In the end, I applied my own "bias" to the studies.

It would be a HUGE service to the site if you have found peer reviewed studies that can help de-mystify the various approaches.  Thanks.

[PaulW]

There used to be a collection of research papers on the website.
I think it was in the member section

[lilith]

Thank you Paul for helping us to think about it.

[Blw]

I have a bunch of pdf files. If someone can send me an email address I will mail them, or tell me how to post and I can post them. They are reviews of large clinical studies.

[PaulW]

I know when I was doing my research university libraries had free access.
While I didn't have access, my friend did get me the full papers that I wanted.

A good site for finding full papers is here

www.freefullpdf.com

Also try
www.scribd.comThis one isn't free but I have managed to find some copies of papers that were uploaded.. Papers are cheap..

Interestingly  scribd was started by the son of John Adler the invented of Cyberknife

[Blw]

Pubmed is the place to go for every research article published. Not all are accessible, but many are.
http://www.ncbi.nlm.nih.gov/pubmed/

[Blw]

I actually found my good reviews, particularly for gamma knife. One thing I recall from reading them, for very small tumors, you have a great chance of retaining hearing if you get them early.