This sucks - Osteonecrosis of the jaw

First I want to thank all you brave women out there who are sharing your journey. ~ I’m looking for experience/ideas of what to expect from ONJ. First diagnosed with BC in 2005 stage 2, ER+ HR-2neg, then lumpectomy+chemo (ACT)+radiation+hormone therapy, with two recurrences and double mastectomy along the way. MBC diagnosed 5 years ago. 3.5 years on Ibrance + faslodex, 1.5 years on Xeloda, a few months on Afinator + exemestane, and now 6 successful months on Truqap + faslodex, shrinking liver lesions and CA 15.3 down to 60. I take good care of my teeth but was having pain in my upper left jaw when chewing crunchy food, and could feel one painful tooth in my lower right jaw. My regular dentist took x-rays and found the jawbone was receding from the painful teeth and there was pus in two pockets - yikes! X-rays at a regular check up in April had shown none of that, so the damage had happened within 5 months. Dentist has me on a week of Clindamycin and clorhexidein mouthwash, and recommended a periodontist and I have an appointment in two days. No idea what to expect !! Advice on how to proceed and what to expect would be greatly appreciated.

No, never on bisphonates or Xgeva.. Did a periodontist treat you? What type of exams and treatments? My onc says it could be long-term effects from previous chemo.

Well, it looks like after 6 years of XGEVA, it has finally become a problem for me as well. Last week my dentist referred me on to a periodontist who surprisingly had an appointment open up the same day I called. He said that he is extremely certain it is ONJ but that it has been caught early while the bone hasn't come through the skin and is still covered by my gums. The symptoms where puss in my gums and when he went to digging around and taking some X-rays. My dentist had already put me on a week of antibiotics and the periodontist will continue me on with the antibiotics and also added a mouth wash that I have to use twice a day. I am supposed to see him again in January. He said he will get with my MO and let him know what is going on. I have been getting my XGEVA shots every three months for about a year or so after getting them every month previously. I am trying to figure out what to expect with this latest situation. I am assuming that my MO will likely take me off XGEVA but I have no idea what they will do for the ONJ beyond that. Anyone have any ideas of what I should expect?

@onlywhenitrains - Thanks for your response. Yes, I did read the rest of the thread and found the information helpful. I am glad that my periodontist will be reaching out to my MO to discuss my situation so that they both know what is going on. Besides being on XGEVA for 6 years, I received pretty high dose radiation on my collabone for my recurrence and have scarring from it up in my neck so I wonder if it might have contributed to the ONJ along with the XGEVA.

Another question I have is how does this work with insurance. I had to pay out of pocket to the periodontist and anything that my dental insurance will pay on this will be paid directly to me. Does ONJ fall under medical insurance at some point instead of dental?

@onlywhenitrains - I totally agree with you about questioning why patients have to do all of this coordinating. So far I've avoided ONJ (knock on wood), but I find this generally throughout this whole breast cancer business, and I don't know why it isn't addressed and why more people don't talk about it. Some of us feel awful a lot of the time and aren't up to doing a lot of leg work. Also I've felt sometimes as if some of these medical people think I work for them, given all they can sometimes expect me to do.

Insurance coverage depends on who performs the treatment, what part of the mouth is involved, and whether the procedure is considered medically necessary. Medical insurance will only pay for work done by oral surgeons since dentists and periodontists are not doctors. Dental insurance pays for teeth and gums while medical insurance covers invasive jawbone treatment or serious gum problems due to a systemic infection.

An endodontist sent me to an oral surgeon with a severely infected tooth. Dental insurance covered the extraction, novocaine and dental x-rays but medical insurance paid for the general anesthesia needed. When things didn’t get better I ended up having two facial CTs, a bone biopsy, partial removal of my jawbone and a PICC line for antibiotics paid for by med insurance. The biopsy found osteomyelitis (bone infection) rather than ONJ or cancer. The oral surgeon told me that medical insurance does not cover early stage conservative treatment for ONJ but does pay to have necrotic bone removed by surgery if necessary. Dental insurance contributed a bit to my out of pocket costs for a bridge to replace three teeth (not enough bone left for implants.)

Strangely, it was the oral surgeon who diagnosed my breast cancer. When he gave me the biopsy results I was thrilled it wasn’t bone cancer until he said only people with cancer or HIV get osteomyelitis in the mandible. After a negative HIV test he sent me for a mammogram since I had been called back two and a half years prior. I had two clear mammograms after that (they turned out to be bad reads) but this time I ended up with a malignant biopsy.

The oral surgeon knew how to get things covered, I.e. ordering CTs at a hospital even though they are more expensive and encompass more area than cone beam CTs in his office. Dealing with SEs from cancer treatment shouldn’t be so complicated. I have been on and off bisphosphonates for osteoporosis for years. My endocrinologist runs CTX (blood) and NTX (urine) tests to continuously monitor bone absorption even though DXA scans are still needed for diagnosis and assessing fracture risk. Pulmonary fibrosis and the quick regrowth of my excised thyroid goiter were SEs of radiation scatter. My RO referred me to a pulmo who deals with my lungs. He assigned my PCP responsibility for treating the resulting anemia and my endocrinologist with monitoring my airway since my trachea was severely deviated (recently had RFA of thyroid nodules to open it up.) These things are outside the purview of oncs; I was fortunate to be at a large hospital with all kinds of specialists.

I hope you ladies are successful with the less invasive ONJ treatments. It’s a shame medical insurance won’t cover dental SEs of cancer treatment.

@maggie15 Thank for the detailed overview of your odyssey. I, too, am at a large hospital with access to specialists. Unfortunately for me, the only ones I've needed so far are outside the purview of the medical end of things. My oncologist and my PCP (also in the hospital system) have no access to my dental and eye records. They rely on what I tell them. Does your oncologist review the records from your pulmonologist and your endocrinologist? If so, I'd put this in your "win" column. Sounds like you could use a few wins.

@mc22. I feel like I was under the wrong impression re: ONJ. I thought if I had to have a major dental procedure, it was POSSIBLE that I would develop ONJ. Now I'm thinking that a major procedure would reveal and maybe accelerate ONJ. My sense is that everyone I saw along the way re: my tooth pain - dentist, perio hygienist, periodontist, endodontist, all suspected my pain was due to ONJ. I point blank asked the hygienist after the ONJ was a done deal if she knew before my extraction. She said no. I said, then why were you so sad after my last appointment? She said, "It was because of what I thought you might have to go through." Not sure I buy that.

Since you're not having pain, I would say keep up with your cleanings and gum health. But you should push your oncologist about the "increased uptake," and how necessary it is that you continue Zometa? As I said upthread, I probably didn't need to take Xgeva as long as I did. And I was woefully under-informed about ONJ (in spite of my extensive Dr. Googling). I wish I asked more questions.

As far as which scans can show ONJ. I'm no expert, but everything I've had so far (nuclear bone scans, dental x-rays and a brain MRI) essentially say, there's something funky in her upper right maxilla -we have no idea what. I never saw the results of my cone beam CT. I gotta get on that request for those records.

@onlywhenitrains, thanks for sharing your perspective on this. What you said about a major procedure revealing or accelerating ONJ makes sense. I'll start with my regular dentist, and see if he can figure out what's going on. No one told me that my September scan showed something in my jaw for the first time so that's frustrating.

Did your imaging show an issue in your jaw prior to the tooth pain?

I appreciate you sharing your knowledge about the scans and ONJ. It's very helpful.

@onlywhenitrains, thanks for getting back to me. I've sent a copy of the scan report to the dentist, and I'm waiting to see what he suggests.