I hope some of you will read the lengthy post that I put up not too long ago about radiation damage to the nerves and muscles of the swallowing mechanism, the need for IMRT competent facilities to target around these areas like they do the salivary glands to spare them etc. It is well known that progressive deterioration of the controlling nerves and muscle groups in the swallowing function from radiation, make dysphasia something that creates quality of life issues down the road from treatment, and this has nothing to do with PEGs. Everyone wants to talk about how they got by without a PEG and attributes their ability to swallow, not aspirate, etc. to not having a PEG. It much more dependent on how much radiation that area of anatomy got than anything else. RO's are just now figuring this all out. There is a news story on this on the OCF web site as well. The gist of this is that the sad truth in the US is that there are far too many treatment facilities that don't even have IMRT capabilities though it has been the standard of care for a decade. There are far too many RO's that are just not up to speed on what can be spared and still get cancer control. The problem is that when IMRT came out, RO's now had to know anatomy as well as a surgeon, and that requires a complete relearn of things. There is a bell curve of who has gotten up to speed and who has not across the country. Even at the best institutions.

Strictures from radiation fibrosis is also highly variable depending on the area radiated, and the duration and intensity of that radiation.

Anecdotally from speaking with hundreds of cancer survivors and patients every year for more than a decade I would think the 30% number is very high.

OK I just go off the phone with Ang at MDACC (my RO) and well respected. He also feels that 30% in very high and not their experience there. He also said that he was unaware of any current peer reviewed published data that really looked at this in a manner that he would be comfortable putting a number on. He also said that data would have high bias in it as facilities do not follow up well with patients after 5 years when the radiation damage to the nerves etc. is still continuing. The questionnaires that I get every year from MDACC basically are only asking me if I am still alive, and if I have had a recurrence. Given that and the mobility of the population, plus the number of people that travel to distant institutions that do not stay with those docs as their follow up doctors for monitoring, that data collection would be highly difficult and likely very inaccurate.