Symptoms Spotlight: Osteonecrosis of the Jaw (ONJ) with Abigail Johnston and Melanie Sisk
Live from Stage 4 | Episode # 047| 09/29/2026 | Symptoms Spotlight
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Hosts
Abigail Johnston lives in Orlando, Florida and has been an attorney since 2002. In 2017, while tandem breastfeeding her boys (then 1 and 3), Abigail was diagnosed with de novo Stage IV Metastatic Breast Cancer (MBC) and soon thereafter discovered that she has a genetic mutation that predisposed her to developing cancer at ATM. Since her diagnosis, Abigail has focused her efforts on patient advocacy and supporting those people in the MBC Community through her experience and training, virtually and in person. She currently serves as the Director of Mentorship, Legal Clinics and financial services at Project Life, a founding member of the PIK3CA Pathbreakers, and volunteers with a variety of organizations including the MBC Alliance, FORCE, METAvivor, and many others. Connect with Abigail via her blog at NoHalfMeasures.blog.
Melanie Sisk was a wife, mom of two young boys, and working full-time as a Registered Nurse when she was diagnosed with Stage 1A Breast Cancer at the age of forty-three. She completed her recommended surgery and radiation and was on endocrine therapy. Melanie thought she had put cancer behind her because she did everything right. However, she was diagnosed with Metastatic Breast Cancer at the age of forty-seven. Due to her metastatic treatment protocol and disease, she retired from her nursing career. Melanie has dived into advocacy work with an urgency to do what she can, while she can. She helped to start and moderate a local support group in her area of North Carolina called Piedmont Triad METsters. She is a trained volunteer with Cancer Services, Inc. and a Peer to Peer Support Group Leader and Light Up MBC State Captain for METAvivor. She is a Living Beyond Breast Cancer 2023 Hear My Voice MBC leadership alumna and a mentor with Project Life. She also serves on the MBC Leadership Committee for Surviving Breast Cancer. She is also a part of the new initiative, PIK3CA Pathbreakers.
Summary
Abigail Johnston and Victoria Goldberg discuss osteonecrosis of the jaw (ONJ), a rare but serious side effect of bisphosphonates used to treat bone metastases. Both hosts are ONJ patients who share their personal diagnostic history, surgical treatments, and ongoing management strategies. The episode emphasizes that while ONJ is uncommon, awareness and proactive dental care are essential for anyone taking bone-strengthening medications.
Key Takeaways
ONJ is rare but real – Don't let fear prevent you from taking necessary bisphosphonate medications; be informed instead.
Know the warning signs – Pain, white patches on gums, exposed bone, excessive bleeding, and pus are red flags to seek immediate dental care.
Find a specialist – Ask your dentist if they have experience with ONJ. Look for dental oncologists at cancer centers or NCI-affiliated institutions.
Bring your medical history – Give your dentist educational materials about your cancer treatment and medications; don't assume they know.
Increase dental visits – Go every 3 months instead of 6 months if you're on bisphosphonates for closer monitoring.
Request proper imaging – Ask for 360-degree x-rays, not bite-wing x-rays, which can damage your jaw.
Use medical insurance strategically – Some dental procedures and imaging can be covered under medical (not dental) insurance, saving you money.
Surgery is manageable – Debridement procedures are typically outpatient and well-tolerated; most are covered by medical insurance.
Medication decisions require specialist input – Discuss continuing bisphosphonates with a dental oncologist after ONJ diagnosis; don't automatically stop.
Recent research may change treatment – New trials suggest lower bisphosphonate doses may be equally effective with reduced ONJ risk.
Knowledge reduces anxiety – Understanding what to look for empowers you to catch problems early and take control of your care.
This episode is for general information only and is not medical advice. Please talk with your own care team about your specific situation.
What Is Osteonecrosis of the Jaw (ONJ)?
Osteonecrosis of the jaw, or ONJ, is a rare but serious condition where part of the jawbone loses its blood supply, stops healing, and begins to die. It most often shows up as a sore or area of exposed bone in the mouth that simply won't heal, and it can cause pain, swelling, loose teeth, or even drainage from the gum. ONJ is most commonly seen in people who take certain bone-strengthening medications such as bisphosphonates (like Zometa or Fosamax) or denosumab (Prolia or Xgeva), especially after a tooth extraction or other dental procedure. It can also develop in people who have had radiation therapy to the head and neck. The good news is that with early detection, good oral hygiene, and close communication between your dentist and doctor, ONJ can often be managed and its progression slowed or stopped.
Stages of ONJ
Stage 0 — Early Warning Signs No exposed bone is visible yet, but something feels off. Patients may experience jaw pain, tooth loosening, or changes seen on an X-ray like unusual bone density or structure. This stage is easy to miss, which is why regular dental check-ins matter.
Stage 1 — Exposed Bone, No Infection Dead or exposed bone becomes visible in the mouth, or a small opening in the gum probes down to bone. At this stage there is no pain and no sign of active infection. Many patients don't even realize anything is wrong.
Stage 2 — Exposed Bone With Infection The exposed bone is now accompanied by pain, redness, swelling, and signs of active infection, sometimes including pus. This is the stage where most patients seek care, and antibiotic treatment is usually started.
Stage 3 — Advanced Disease This is the most severe stage. The dead bone has spread beyond the tooth-bearing area of the jaw and may involve complications such as a pathologic (spontaneous) fracture, an opening between the mouth and the sinus or nasal cavity, an external fistula (a tract that drains through the skin of the face or neck), or bone loss extending to the lower border of the jaw or the sinus floor. Surgical intervention is often necessary at this stage.
Frequently Asked Questions
Can I still go to the dentist if I am taking bisphosphonates? Yes, and you absolutely should. Routine dental care such as cleanings, exams, and fillings is safe and strongly encouraged. The key is to tell your dentist about every medication you are taking before any procedure begins, so they can plan your care accordingly and take the right precautions.
Do I need to stop taking my bisphosphonate before dental surgery? This is a decision that must be made together by your prescribing physician and your dentist or oral surgeon. For patients on low-dose oral bisphosphonates (such as Fosamax for osteoporosis), the risk of ONJ from routine dental work is very low. For patients on high-dose intravenous bisphosphonates used in cancer treatment, the conversation is more involved. Never stop or change your medication without guidance from your care team.
How common is ONJ in people taking bisphosphonates? ONJ is rare. In patients taking oral bisphosphonates for osteoporosis, the estimated risk is roughly 1 in 10,000 to 1 in 100,000 patients per year. The risk is higher in cancer patients receiving intravenous bisphosphonates, estimated at around 1 to 15 in 100 patients, particularly when combined with other risk factors like dental extractions, steroid use, or chemotherapy.
What dental procedures carry the most risk? Tooth extractions are the most commonly associated trigger for ONJ, followed by dental implant placement and other procedures that involve cutting into or disturbing the jawbone. Non-surgical procedures like cleanings, fillings, and root canals carry a much lower risk.
What can I do to lower my risk? The most important steps are to have a thorough dental exam and complete any necessary dental work before starting bisphosphonate or antiresorptive therapy, maintain excellent daily oral hygiene, attend regular dental check-ups, avoid smoking, and keep your dentist and doctor informed about all medications and treatments you are receiving.
What should I do if I notice exposed bone or a non-healing sore in my mouth? Contact your dentist or oral surgeon right away. Do not wait to see if it resolves on its own. Early intervention gives you the best chance of managing ONJ before it progresses to a more advanced stage.
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Victoria Goldberg 0:09
Could a cure for cancer be closer than you think? Welcome to Life from Stage 4, where MBC takes center stage as we talk to experts, share inspiring stories, break down signs, and shine the spotlight on what matters most. Because when it comes down to it, the spot, for us and by us, is all about us.
Abigail Johnston 0:36
Hi, I'm Abigail Johnston.
Speaker 0:40
Hi, I'm Melanie Sisk.
Abigail Johnston 0:42
And we're here today to talk about symptom management. This series is called Symptom Spotlights, and we will regularly be bringing information to you on various symptoms caused by cancer or the treatments for cancer and how different patients are managing them. We learn so much from each other. What a great example of how we are stronger together.
Speaker 1:03
And we are so excited to bring this hard-won peer wisdom directly to patients. And please let us know if there is a symptom you would like us to talk about. And now let's get to it. Abigail, what symptom are we shining the spotlight on today?
Abigail Johnston 1:22
Welcome to our Symptom Spotlight, where we are going to be shining the spotlight on a relatively rare complication or side effect of bisphosphonates, which many people with bone mets take. Some examples that you might recognize would be Zometa or Xgeva. And so osteonecrosis of the jaw is a known side effect of all the bisphosphonates. Sometimes you see it as medically induced osteonecrosis of the jaw, M-I-O-N-J. Sometimes it's bisphosphonate-induced osteonecrosis of the jaw, B-I-O-N-J. And from talking with a lot of people who are newly diagnosed, this is one of the side effects that a lot of people really worry about and worry about even starting a bisphosphonate because they are so concerned about this side effect. So we wanted to talk about it. And we are joined today by Victoria Goldberg, who's our executive producer. Oh, please. Please, please, please. Hey, you know what? Gotta give you props because you're the one who's steering the ship here. We share a diagnosis of this phosphonate-induced osteonecrosis of the jaw. So I'd love to hear how that's been going for you. And I know you've had a surgery. So if you could tell us about that.
Victoria Goldberg 2:45
I'm so happy to be here. And it's an important topic to talk about. Yes, it's rare. And yes, there is a good chance you won't get it. But it's something worth worrying about, I think, right? It doesn't hurt to make sure that your dental care is taken care of before you start this treatment. And it's very important to be on top of it. And even more important, and of course, I understand it's not for everyone, but it would be really important to find a knowledgeable dentist.
Abigail Johnston 3:20
Absolutely.
Victoria Goldberg 3:21
Because even in New York City, and this is where I am, you would think that uh here we would have so many specialists. But it turns out in New York City there are two known for their specialty in osteonecrosis of the jaw. Probably dentists at MSK are very knowledgeable about it, and maybe at other NCI affiliated cancer centers too. But in New York City, unaffiliated, too. Being in New York City, I thought I had first-class dental care. And it turns out that arrogance is not always a good sign of a good dentist. I saw a dentist and I told him when I first saw him that I have metastatic breast cancer. I've been on bisphosphonase for five years at that time, and I'm really worried about it. And he completely dismissed it. He said, Oh, yeah, no, no problem at all. Nothing. It's all right, I know all about it. So COVID came, and I didn't have any dental care for a year or so. And when I went to see him, I mentioned something about my lower jaw, and he said, Oh, you have a bad infection there. Fine, we'll take care of it. But your tooth has to go. The bottom tooth has to go. So they extracted the tooth. And when I came back, I said, I feel like I have a little bit of the bone sticking out of the space between the teeth. And he said, Oh, it's nothing. Don't worry about it. It's nothing. Okay, it was nothing. I got a bridge, and then a few months later, that bridge started to bleed terribly. I had blood pouring out of me. And I don't know if I want to go into so much detail, but I think it's relevant. And unlike most people, which is, I guess, a good and a bad thing, unlike most people, I didn't have any pain. Most people have horrible pain, and that's a signal that something is going wrong. But in my case, I didn't have any pain. So my first sign was all this blood pouring out. So I went back to this obnoxious, arrogant, expensive dentist, and he said, Oh, I can't do anything about it. I'm gonna send you to a surgeon. So he sent me to his surgeon, and his surgeon was smart enough to say, No, this is osteonecrosis of the jaw. This is not something I can deal with. So he sent me to one of the two doctors in your Dr. Fleischer in NYU Dental. I think it's important to know his name. He's wonderful. I like him. And he said, You have fairly spread infection in your jaw, and they'll have to debride it. So it's a surgical procedure. They go in and they scrape off all the layers of infection. And he has something different that he does. Oxygen chambers are used for infections and serious burns. And he does that too. He uses hyperbaric chambers before he does the surgery to take care of the infection. And I can't tell you whether it helps. I think it does. Osteonecrosis of the jaw is actually staged. Like cancer, this disease is also staged. So one and two is nothing, it's troublesome, but not something to worry about too much. But stage three, that's what I had, is a serious, serious problem. And that requires surgical intervention. And I had it done under general anesthesia at NYU. It was an outpatient procedure. It was not that bad, honestly. But it is a surgery. And after that, with osteonecrosis of the jaw, once it happens, there is absolutely nothing you can do, really. They don't want to do any implanting in that area. So you're stuck with dangers, which is not a lot of fun. Although, I have to say, I don't know if Abigail, you know it, a friend of ours who has osteonecrosis of the jaw, her doctors deemed possible to do an implant in the area, and that was successful. So some dentists evaluate it and decide that maybe it is not that bad, and maybe you can do something about it. But for the most part, unfortunately, you're stuck. You're stuck with what you have. I'm stuck with a partial denture. But you've had experience with ONJ. What was your experience like?
Abigail Johnston 7:58
Yeah, so right around the time that COVID happened, I thought I had my first cavity because I still have never had a cavity. I can't believe it. I can't believe it. So people who have had dental work, like what's the thing where they drill down into the jaw? It's called a root canal. Root canal. Well, you don't have to know this stuff because you haven't even had a cavity. Oh my goodness. Right. But so people who have had extensive dental work have had root canals where the integrity of the jawbone has been breached, right? They tend to have a little bit of a higher risk of developing osteonecrosis. So I was evaluated as like zero risk because I had never had any dental work done. I had braces, but years and years ago. So I was at my dentist who had been in practice for 35, 40 years at that point, went in thinking I had a cavity for the first time because I did have pain. And it was not, it was osteonecrosis. And he said to me, the last time I saw this was in dental school in a picture in a textbook. And so called in various other members of the office with my permission to look at it because he said, Look, you're not going to see this very often. And so I made the rounds of the various different doctors. I saw an endodontist, you know, just trying to figure out what the heck I was supposed to do, and ended up with an osteonecrosis specialist down in Miami who oversaw what ended up happening. So the tooth that was the most affected ended up having to be removed. I had a similar debridment surgery, also an outpatient, very well tolerated. So the great thing about what they did for me was not only did they debreed out the hole, which was there when you know the tooth came out, they also used something akin to a cautery and deadened all of the nerves. Oh, yes, absolutely. Yes. And so that really helped because the osteonecrosis in my jaw is progressive. And so I lost tooth number 19, which was all the back molar, and then number 18, which is the next one, is fully exposed. So the roots are completely exposed inside my mouth. But because they took care of all the nerves, it's okay, right? I can do what I need to do. But really, one side of my jaw, my mouth is numb. So it's been manageable for me. Yes, there was quite a bit of pain in the beginning, especially as the bone was dying around that tooth. Yeah, it became mobile. And that was no fun. But with the surgery, it's been very manageable. And so when we moved, you know, obviously I had been with that particular dentist for the time that we were down in Miami. He did a great job of discovering it, sending me to the right person. But when we moved, I had the opportunity to look for a new dentist. And that was a big question of mine was have you experienced patients with osteonecrosis? Have you managed patients with osteonecrosis? And we have a community here in Florida called the Villages, which is somewhat notorious. Notorious. Everybody has heard of it. Yes. It has a lot of retired people there. He had had a practice in the villages, and a lot of his hygienists had worked with people in the villages. And the reason I'm mentioning that is because in the geriatric population, a lot of people are on bisphosphonates, not necessarily for cancer, but more for bone degeneration and those kinds of things. And so because they had practiced, he and a bunch of his hygienists had practiced in the villages, they had a lot of experience with people with osteonecrosis. And so that would be one thing to ask for is if you have an established dental practice, to ask them just how much have you seen? How much have you experienced? Because one of the things that I do is I go in instead of every six months, I go in every three months. Three months, me too, so that they can keep a close eye on the things. That tooth, number 18, there's the jawbone has completely receded all the way around it. And so it's literally hanging on inside my mouth by the soft tissue. And they have helped me maintain that tooth so that because as soon as it comes out or needs to be pulled, I will need another surgery to debris the hole that's left behind. So it's a constant recalibration. But one of the things that came out of ASCO was the reduced trial, where they were looking at how long people should be getting prolia in this particular trial phase three.
Victoria Goldberg 12:52
It is cancer.
Abigail Johnston 12:54
And they discovered basically that we may be over-treating. Five years might have been over-treating. Hey, I got Zometa on a monthly basis for five years. So I get it. And I think that when you have a lot of bone mets, which is my situation, the default is more, is better. But the trial did show four loading doses, and then they went to quarterly, right? That that they were just as good. The incidences of osteonecrosis or any other serious side effect was about the same. What they called skeletal events, these pathological fractures that we will often get because of the cancer, that those skeletal events were about the same. So there wasn't a more protective factor of getting it more often. So it's a good window, maybe, into just knowing how do we make decisions on taking a medication that has caused a serious side effect, but that we might still need it.
Victoria Goldberg 13:57
Right, exactly.
Abigail Johnston 13:58
Because I think most doctors and most of the doctors that I have, as soon as you have osteonecrosis of the jaw, they take you off of the bisphosphonate. They take you off of the medication that caused it. I have chosen to still get some Zometa at various points based on what the cancer is doing. But that has been overseen by a dental oncologist. So not just a dentist that has expertise, but somebody who's actually a dental oncologist has overseen those decisions. And from talking with other people who have osteonecrosis, finding specialists may be one of the biggest challenges.
Victoria Goldberg 14:37
No, I'm telling you, this was this was such an eye-opener for me, you would think. And probably it was exactly the same. My first dentist had never seen, had never seen a patient with ONJ. Right. Yeah.
Abigail Johnston 14:52
Which to their credit, it it is still a rare side effect.
Victoria Goldberg 14:55
Fine. And I don't disagree with that. I think it's perfectly reasonable to assume that your dentist wouldn't know about it. But it's also important to admit to it. If you don't know what you don't know, don't tell that you do know.
Abigail Johnston 15:12
Yes. Yes. And well, and I really appreciated the endodontist that I saw was like, yeah, the last time I saw anything about this was literally in dental school. And he's like, I'm not the right practitioner for you. And I appreciated that a lot.
Victoria Goldberg 15:26
I did too, very much so. The surgeon that I saw first who said, No, I can't treat this. And I'm so appreciative and so grateful that he directed me to see somebody. I didn't even know that there were ONJ specialists. Honestly, I had no idea. Because I'm so Pollyanna-like. When I heard that there may be some issues with the jaw when I first started on bisphosphanates, I said it's not going to happen to me. It's very rare. If it's rare, it's not going to happen to me. Of course, it will happen to me. Because unlike you, I didn't have just one cavity or zero cavities. I had a mouthful of root canals and cavities.
Abigail Johnston 16:06
Well, and people's mouths tend to be more acidic or more alkaline. The people who have more acidic environments tend to get more cavities. So my husband is that way. I get more tartar because my mouth tends to be more alkaline.
Victoria Goldberg 16:22
I get both. Or letting me know that I should be a lot more careful about my dental care. And this is something that we can impart on people here. I think that's the most important thing. Don't be afraid, don't worry. It is an issue, but it's still a very rare issue. Do not stop your treatments or decide not to have your treatments. It's right very, very important. But make sure that you have good dental care.
Abigail Johnston 17:07
Yes. Yes. So early symptoms, early signs potentially of osteonecrosis of the jaw. Pain is one of them. If you see white where it's supposed to be pink, it's supposed to be your gum. And there's white where your gum is supposed to be. That is another sign. So as the jaw bone itself is dying, the gum on top of it dies first because there isn't the same blood flow. And so you will see that's what I had. I had white where my gum should be. My bone was exposed. Of course, why did I think that was a cavity? Because I've never had a cavity. Right. But that's another thing to look for. Infection is another thing.
Victoria Goldberg 17:48
Excessive bleeding is a sign of infection. If you see POS, then run.
Abigail Johnston 17:56
Don't walk to your nearest dentist. Yes. Yes. And one other thing I would throw in many of us have dental insurance that doesn't cover much of anything, which is a frustrating thing, right? So things like the 360 x-rays, where they don't put the bite wings in your mouth because unfortunately those bite wings can actually cause further damage to your jaw. So those 360 X-rays where your head is inside of it and it goes around your head, that if you're like me, dental insurance only covers that once every couple of years. However, you can get that covered under your medical insurance. And so what I have done, because my dental oncologist is able to order some things differently, that has saved me a ton of money getting the same information that my dentist would be getting in his office, but because it's under my medical insurance, it's covered differently. And so if you're thinking about, because I know that dental work can sometimes be expensive and people avoid it sometimes because it's expensive, that there may be some ways to get screening, diagnosis, even treatment covered under your medical insurance versus your dental insurance, something to think about.
Victoria Goldberg 19:07
And if you ever need the surgical procedure, and I hope you never will need it, I think that one is covered by your medical insurance. At least mine was.
Abigail Johnston 19:17
Mine was as well, yes. And I don't know if that's because it was a medical doctor, a surgeon that was actually doing the surgery versus dentists do surgery all the time, too. But good questions to ask.
Victoria Goldberg 19:30
Absolutely. And just I guess to reiterate, when you go to see your dentist next time, if you hadn't done this already, ask them if they know what ONJ is and if they are comfortable in treating. I think we all tell our dentists, our medical histories, but they may not know. So it's a good idea to always ask.
Abigail Johnston 19:58
100%. And what I typically do too is as I change lines of treatment, I bring in the same paperwork that they give you during chemoeducation. I will bring that because I never assume that they're gonna know anything about oncology drugs, and they don't usually. But giving them that information, because there are some things that are different lines of treatment cause not just ONJ, but dry mouth. And that's a huge issue when it comes to the health of your mouth and your teeth and all of that. So making sure that you're keeping your everybody updated on things.
Victoria Goldberg 20:30
That's that's very important. And actually, this is completely off topic, but I wanted to mention something. I think as a result of many years of chemotherapy for me, I developed an autoimmune condition called chogrin's. And showgrin's is exactly what Abigail just said: dry mouth. So this is something that that's important for us not to have. Uh, special toothpaste, special rinses. And I just heard that there is a first drug to treat children's out there.
Abigail Johnston 21:06
Exciting. Exciting. Yes, absolutely. So I guess the moral of this story is don't be so afraid of a potentially rare side effect like osteonecrosis when your doctor is recommending a medication. Getting informed about each particular medication, getting informed about what may predispose you to developing any type of any particular side effect. Doing that research ahead of time can be really helpful. And if you are not comfortable doing that research, asking your doctor or maybe even asking your pharmacist about what to look for or what you might be predisposed to so that you can take whatever steps you need to take so that you can be aware of what to look for. And that's all we can do as patients is provide our providers with as much information as possible about what we're experiencing. But taking that step further to know what to look for reduces anxiety, right? I know what I'm doing for.
Victoria Goldberg 22:06
Absolutely. Right. So this is our big takeaway. Don't be afraid. It happens. But if it does happen, you can deal with it. Exactly.
Speaker 22:19
We hope you have enjoyed this conversation as much as we did and learned a little along the way.
Abigail Johnston 22:26
Please don't take any of what we've shared today as medical advice. If you have a question about a product or if an intervention is safe for you, we encourage you to engage with your team. You will find links to each of the products and the interventions we talked about today in the show notes.
Speaker 22:41
We want to hear from you. Did you enjoy today's spotlight? Is there another product that you have had success with? Is there another symptom you would like to hear us talk about? Engage with us, and you may find yourself receiving samples.
Abigail Johnston 22:58
This episode was produced by me, Abigail Johnston, and my dear friend Melanie Sisk. Until next time, be well and keep thriving.
