David
Might Trotti have been referring to the percent of patient who have Dysphagia (swallowing disorder) due primarily to radiation/chemoradiation?

Trotti has participate in RTOG chemo-radiation and Dysphagia studies - one in 2008 and it is a significant issue aggravated by chemo-radiation (CRT).

PEG tube dependence can make Dysphagia worse, but in most studies despite Dysphagia, over 80% of patient manage to get off their PEG within a year and over 90% by two years.

Unfortunately some may have to always have a PEG due to other issues but not due to PEG dependence.

A large percentage of us will have dysphagia to varying degrees regardless of whether we had a PEG or not and for many of us this can get worse well after the PEG has been removed.

Anyway, I can't come up with any data supporting a 30% life time dependence rate for PEG users and my RO mailed me back that it is no where near that level. She say Trotti is referring to dysphagia and told me I could email him through the Moffitt.org site.

Study References:
http://www.headneckcancer.net/mt-static/publication_pdfs/Oto-HNS-2006.pdf

http://www.headandneckcancer.org/meetings/documents/AHNS09FinalProgweb.pdf (section printed below:
P077 (COSM poster #200)
RATES OF PEG TUBE DEPENDENCE AND ESOPHAGEAL
STRICTURE FORMATION FOLLOWING DEFINITIVE CONCURRENT
CHEMOTHERAPY AND INTENSITY MODULATED RADIATION
THERAPY FOR SQUAMOUS CELL CARCINOMA OF THE HEAD AND
NECK - Susan A. McCloskey, MD, Wainwright Jaggernauth, MD, Nestor
R. Rigual, MD, Wesley L. Hicks, MD, Saurin R. Popat, MD, Thom R.
Loree, MD, Mohamed K. Khan, MD, Mary E. Platek, James M. Smaldino,
Anurag K. Singh, MD; Roswell Park Cancer Institute
Background: The incidence and duration of swallowing dysfunction
associated with definitive concurrent chemotherapy and intensity
modulated radiation therapy (IMRT) for management of locally advanced
squamous cell carcinoma of the head and neck (SCCHN) have not
been fully described. Methods: This retrospective review identified 78
consecutive patients treated with definitive concurrent chemotherapy
and intensity modulated radiation therapy (IMRT) for SCCHN at our
institution. Crude rates of percutaneous endoscopic gastrostomy (PEG)
tube dependence and esophageal stricture formation are reported.
Results: Median age of the cohort was 62 (37-81). Median follow-up
was 20 months. Tumor sites included: oropharynx (54%), larynx (36%),
oral cavity (5%), and hypopharynx (5%). 74 of 78 (95%) patients had a
PEG tube placed prior to or during CRT. At the time of this analysis, PEG
tubes had been removed in 63% of patients after a median of 167 days
(range 65 to 666 days). Among 25 patients who had their PEG tubes in
place at last follow-up, median time of PEG dependence was 417 days
(range 109-952 days). At 3, 6, 12, 18, and 24 months respectively, 96%,
61%, 31%, 19%, and 6% of evaluable patients with adequate followup
remained PEG tube dependent. Seventeen of 78 (22%) patients
developed esophageal stricture formation requiring dilatation at a median
of 6 months (range 3-24 months). Conclusions: Esophageal strictures
formed in nearly a quarter of all patients. At one year, nearly one third of
patients remained PEG tube dependent. Given the significant impact of
swallowing dysfunction on quality of life, all efforts should be undertaken
to understand this relationship and minimize this effect. Novel
radioprotector studies are being planned at our institution.

Thanks Don for the interesting info. I was wondering about the number who had to have their esophagas stretched as there have been a couple recent questions. Now I know aprox. 25%.

Well I'm going to e mail Dr T and see if he will expand on his 30%.

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.

I wish I only had dysphagia instead of aphagia. Brian is spot on about the importance of the RO planning the IMRT to avoid the swallowing muscles/area as much as possible. While my throat was too sore to eat solids, I had no real swallowing problems despite 40 IMRT. Soon afterwards I was back to eating regularly. My RO said it was a combo of no PEG so I was always adjusting my swallowing to the changes (like the old story of Hercules lifting a calf until it became a bull) plus careful radiation planning
Even when the cancer came back and I had to have a second dose of concentrated radiation via CyberKnife, my RO miminized the radiation exposure. Of course the radiation didn't help or cure the physical damage caused by the surgery but even the little bit of "spray" made recovery from the surgery impossible for me.

I want to be clear that the PEG put in the second time did NOT cause my inability to swallow now. It's a complex combination of reduced base of tongue retraction with reduced contact to the posterior pharyngeal wall and incomplete cricophyaryngeal muscles relaxation. This results in pooling in the pyriform sinuses and vallecula of the bulk of what I try to swallow which means aspiration and pneumonia if I do not use the PEG tube exclusively. I had high hopes for swallowing therapy and VitalStim electrical treatment but the MBS all show no improvements.
Charm

Here is my e mail to Dr Trotti and his response below:

I e mailed....

On the Oral Cancer Foundation website we were discussing PEG vs no PEG for the 1000th time, we call it the PEG WARS but anyway I said that the last time I discussed the PEG issue with my Dr Trotti he told me that his experience was that 30% of his or Moffitt's OC PEG users became PEG dependent.

Did I misquote you?

Please briefly explain.

David

And he replied......

I will reply to your OCF post, but your interp is a bit off. It is 30 at 1 year, 15 at 2y and 8 at 3 years in 2D RT era (pre 2005)---IMRT has been standard for last 3-5 yrs. The rates are lower for IMRT but data is just now coming in ....more later.

Andy

Hell, at one year from beginning treatment I was still on morphine and PEG. So that does not surprise me. I didn't want a PEG and resisted it until my weight drop triggered MDACC mandatory installation. That was about the 6th week into things. IMRT in the right RO's hands, is definately making this a lesser issue, IF THAT RO IS UP TO SPEED ON WHAT THE LATEST INFORMATION IS ON HOW TO SPARE THE SWALLOWING MECHANISM ANATOMICAL STRUCTURES.

Glad to read what all of you are saying because I'm in that "I don't want a peg" place--my treatments won't start for several weeks. I'm going to start without a peg but am hoping I will be able to let go when the drs recommend one. I want to stay as strong as I can.

Hey Susan! My sister is in he same mode. Also starting Rads within the next few weeks. I would rather her start with it and only use it when needed but I will tell her until I am blue in the face. Lol! She has her mind set. The only thing that is making me comfortable with her decision is she is going to an RO that speacializes in head and neck cancer. Her surgeon wouldn't have it any other way. I hope that she could make it through with out any pauses in her treatment from dehydration. To be con't.......

Hi. I'm new to this so lease bear with me. My mother-in-law is currently finishing her treatments. She has one Chemo tx and 6 rad tx's left. She has a peg tube and is disgusted with it. It has been replaced once already due to infection and she leaks around the tube when she drinks water. Could she be drinking too fast? She just wants the tube out. She feels that she can swallow fine and wants to try to eat soft foods and such but is afraid because of the leakage around the tube. Any advice? I told her to check with her doctor when she sees him on Tuesday.