Donna,

I am trilled you surfaced after 15 years! And nearly 10 years of silence here on OCF. I bet you get the record for lowest number of posts in 10 years. LOL

Your feeling about ORN is similar to how I view it and it just seems so little is available to assist those to do as much as they can to prevent or minimize it. Maybe there nothing we can do about the actual ORN but certainly a lot can be done in dental care to avoid aggravating the situation.

Your point about a top rate team to treat the ORN is a good one. What do you recommend to all of us in building a team that cares for our oral cavity to hopefully prevent ORN from showing up in the first place?

This is something just not very clear to me and I have tried to make progress in exactly what specialists and qualities and experience they have to best care for my dental and oral needs.

The advice given to the general public about ensuring their dentist does thorough oral cancer screening is simple compared to what is best for a OC survivor who wants to have the best care post tx, watching for signs of ORN and doing everything to prevent it in the first place.

I'm about 16 months post and still struggle a lot with what even some of these folks do such as a "Maxiofacial Doctor". Just what the heck is this speciality? I know to have a good general dentist to watch for the basic stuff but I want to have others who can support everything odd and unusual that we chemo and radiated OC survivors might experience.

I don't lose sleep over it but ORN is right at the top of the list, even higher than recurrence as I believe there are things one can do now whereas recurrence is in God's hands.

Don, ORN has never been on any of my lists. I don't know that there is a lot you can do other than things like PerioSciences products that have been shown to repair early stage ORN and read up on studies. There are so many things that can pop up, you will never be ahead of the curve when you're number is up.

At 16 months, I would look for a "Dental Oncologist". They study cancer related and especially radiation issues. I found the first one by asking the Cancer Center where I was treated. The second one I found through OCF and my wife, simultaneously.

First, I would put together a list of things you want to do. Before the "Bucket List" came out, I used to call the list "The Top 10 Things You Want to do Before You Die". I encourage people to compile that list after diagnosis. Then you just keep on tackling the list till it's done.

Now get out there and do some living to keep your mind from wandering.

I have read that less than 20% of oral cancer patients with radiation to the oral cavity will develop ORN. This figure was in a general article about head and neck cancer with no indication of scientific study to back the figure.

In my own experience I have tried to identify factors that contributed to my ORN in addition to the direct shot of XRT through the mandible. 1.I did not have any blocks or masking for my multiple fillings and several crowns during my 60 Gy. 2.I used bisphosphonates (Fosamax) to treat osteoporosis for about 10 years, and it is known that bisphosphonates can contribute to osteonecrosis. Osteoporosis was diagnosed in my early 50's. My SCC was diagnosed when I was 57. In retrospect, given my SCC dx, there are changes I would have made: 1.I would not have taken bisphosphonates. My PCP and my MO both encouraged continued use after my SCC dx. I made the decision to discontinue Fosamax about 6 years ago. By the way, I have reduced the osteoporosis dx to osteopenia through diet, exercise, natural supplements of calcium/D. 2.I would have thoroughly researched the radiation plan and have addressed blocks, etc. for radiation scatter. 3.After radiation I would have located a dentist familiar with oral cancer and ORN and questioned each panoramic X-ray re signs of ORN.

donfoo and others who have addressed the lack of medical resources for patients with long term radiation effects: My cynical take is "Follow the money." I talk with my current medical team about the lack of professionals in this "field" and encourage other patients to do the same. Unfortunately, I don't anticipate much change. Education for patients is crucial, and we can do that through our participation in SPOHNC, the Oral Cancer Foundation, other patient-active organizations.

Zenda, thanks for the 20% figure. I wish I knew where that came from. To me it seems a little high. Im just thinking of the members here and in my (uneducated) opinion it seems like maybe 10% get ORN. Im also not one to worry about numbers, anyone who has or gets ORN has their hands full. Doing HBO is no picnic but its necessary.

Wishing you all the very best with everything!!!! You are correct with how important education is! Thanks for everything you do to help fellow OC patients!

Be well my friend

15 years ago with conventional radiotherapy it was about 15%. These days with IMRT it's a rare event, more so in oral cancers, with rates from 0-5%, a little higher with Brachtherapy, and Chemoradiation.

Sorry to hear about this news. My biggest fear is ORN

msweet55, try hard to not worry about what can be. There are almost endless possibilities but you will know when you get there. Would you be afraid to go out in the rain after getting your best clothes on if there was 0-5% chance of rain or would you strut out there without worry?

I used to be afraid of every little thing that was "different" and my otolaryngologist told me there was a million possibilities and he would be the first to tell me what was really going on. It changed everything for me.

Hi I have an appointment with the Oral surgeon tomorrow and was in pain the last couple of days, happened to look on the bottom left side and see exposed bone. Is this ORN, I am in pain and can't eat. I had trouble and notice a sharp point but now this looks worse. Is this what ORN does? I have only been six month out of surgery with three pulled teeth. Anyone have any insight that this is what ORN looks like. I guess I will find out tomorrow. Thanks, Michele

ORN is when the jawbone dies. It can break apart and actually shatter in places. Shards can protrude from the gums and can be extremely painful. If untreated, the jawbone will only get worse and more painful. You are doing the right thing by getting checked out right away. Im hoping you do not have ORN! But if it is you are on the right path to getting it taken care of.

Keep us posted. Best wishes!!!


Here is info from the main OCF pages to learn more about ORN.... ORN info

Thank you, Christine so its seems that it is exposed bone to the jaw and that what I think I see. Could you explain what debridgement is? thanks Michele