Healthy Living by Willow Creek Springs
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Healthy Living by Willow Creek Springs
A fly on the wall: listening in on the call with the radiation oncologist
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The battle against cancer often becomes a high-stakes negotiation between medical science and personal choice. This remarkably candid conversation captures a patient's journey through oropharyngeal cancer treatment, where early success with chemotherapy opens questions about standard protocols.
"The tumor has shrunk to about where it was a year ago," the patient shares, describing remarkable improvement after just two rounds of a chemotherapy regimen he personally researched and proposed to his oncologist. With minimal side effects beyond hair loss, the treatment appears to be working better than expected, leading him to question whether the planned radiation therapy—with its permanent side effects—might be avoidable. "I'm trying to do the most amount of good with the least amount of harm," he explains, articulating a universal patient desire.
His medical team listens respectfully while offering crucial context. The radiation oncologist gently explains that while they support his current path, chemotherapy alone rarely provides long-term control for his type of cancer. Standard care typically includes local treatment—radiation or surgery—for durable results. Data shows that even with promising early responses, approximately one-third of patients who skip recommended radiation experience recurrence within six months. Despite this sobering reality, the doctors maintain a collaborative approach, agreeing to reevaluate after his third chemotherapy cycle and upcoming scans.
This conversation beautifully illustrates modern cancer care's complex balance between medical expertise and patient autonomy. It demonstrates how informed patients can actively participate in treatment decisions while still benefiting from their doctors' experience. Whether you're facing cancer yourself or supporting someone who is, this episode provides valuable insights into navigating treatment options with both courage and wisdom. Have you had to make difficult medical decisions? We'd love to hear your experience in the comments.
Intro for podcast
Here is the link for Sunday's 4 pm Pacific time Zoom meeting
here. Okay, there's a. I know. I know that you've uh been continuing to see dr nobar. Yes, how is the uh first steps of chemo been going? It's been going amazing yeah, okay, good, good um any new uh, any new symptoms, anything that you've been uh feeling recently the tumor has shrunk to about where it was a year ago.
Speaker 2:Right, and it continues to shrink. I've done two rounds of the regimen and I have a third round to go, but it's a whole different ballgame right now. It seems to be really retreating quickly. The side effects have been nominal. You know, obviously I've lost my hair and there's been side effects, but basically I feel like we're heading in a good direction.
Speaker 1:Fantastic Good. And you know, I know there were delays from getting the dental clearance and all that, but I'm glad we're finally on the right track. Are you now remind me, have you seen the dentist recently?
Speaker 2:Well, what happened was the tumor was growing rapidly and it was getting aggressive and I was in a lot of pain, I wasn't sleeping and I needed to move. And I went to one dentist and they told me they had to pull all my teeth out and I said no. Went to another dentist and they said I had to get three teeth treated. And I was going through the process of that but she sent me to another. It just was taking long and I have limited funds and I just was in a place. So I did a bunch of research and I came up with a regimen that we're working on right now, which is a neoadjuvant, first-line treatment with three drugs of chemo. That showed that my type of cancer could be treated this way. And I said I presented that to Dr Navar. She said I said look, I got to do something now and I can't get this clearance the way I need to. And she agreed to it and so it's just been working very well and the way I see it right now, I want to continue on this course and see what it does.
Speaker 2:If it continues to take this thing away, we may not have to go forward with radiation, and here's my concern. You know, obviously this is a serious matter. I'm well aware of probably the world's foremost expert on my cancer, because I have spent the last six months just immersed in it, and the things that I'm doing, in addition to the chemo, are making it work better. I'm confident of and it's working. I know that my goal is to heal myself of this, be cancer-free, with the least amount of harm to my body, as I would hope everybody would want that, and I realize, even with the amount of scans that I have in front of me, I'm going to be affected by radiation.
Speaker 2:I've already been affected by radiation and I know that this treatment is going to have irreversible consequences, whereas the chemo if I'm able to manage this and reverse it and maybe even maintain some kind of a maintenance with it the long-term side effects are pretty much nil or they can be mitigated, but I'm not going to be hit with the same type of damage that the radiation is going to incur, and so my hope is that we can manage this with the chemo and not need the radiation. Although I'm not. Look, I'm going to do what it takes, and if this thing does not completely disappear, then obviously we'll keep our conversation moving. But initially the surgeon wanted to go and operate and then Dr Ho said, well, that's going to cause a lot of damage and mutilation, and he said maybe we can just do this with radiation and chemo, and so there's obviously many routes to go that might solve this, and I will do whatever it takes to solve this. That's not the concern. But I want to keep myself as intact as possible. That's my concern.
Speaker 1:Completely understand. I'll say that it's great that the tumor has shrunk so much from the chemotherapy and I know that we got a new net of HPV DNA test that's pending still, they just drew to kind of see how that responded. That will also give us more data to show that the tumor has responded to the induction chemotherapy.
Speaker 2:Absolutely.
Speaker 1:I will say that kind of, for the stage and the type of cancer that you had, chemotherapy alone in general is not effective to control the cancer long term. We do have data to show that you know these patients with, like oropharyngeal cancer, they typically need some sort of local therapy, meaning therapy in the area of where the cancer is, in the form of either surgery or radiation, for kind of more durable control. So you know, I completely understand. You know it's the thought that like, okay, you know you don't want to do as, you want to add as little harm to your body as possible.
Speaker 1:The cancer seems to have responded really well to the chemotherapy. However, you know, without some local treatment we would be more concerned that you know this cancer would have a high propensity to come back and you know I'm sure you remember from the conversations originally, like we likely recommend chemotherapy, radiation in combination with more chemotherapy, which is the best way we know how to treat this cancer. So I, you know, like I said, I understand your concerns. However, I would be kind of concerned if we didn't do some local therapy for you after this induction chemotherapy.
Speaker 2:Well, what I would say is let's continue on the course. I'm not rejecting anything you're saying, I'm just saying as we are going. Right now we seem to be on a trajectory that we could determine. If this thing goes away and there isn't any evidence of it, then I would say maybe we can just monitor it and continue that, and I'm even researching a maintenance chemotherapy cocktail that might be a solution as well. Remember, I'm the one who researched this and came up with this answer for Dr Navar, and I have a good team that's helping me do the research on this.
Speaker 2:I'm also working on getting some additional blood work that will demonstrate some more markers beyond just the HPV, and so you know again, I'm aggressively working to solve this as well, and I consider you guys a very valuable part of the team. So let's continue down the road. Let's, let's, let's continue down the road. The, the, the way that I'm looking right now. Um, on the 9th I have my third round and then, um, dr Navar wants to wait about two to three weeks and run another scan and see where we're at, and at that point then we'll we'll make a, we'll make the next move.
Speaker 1:Got it, yeah, and I see that your third cycle is planned for June 9th move Got it, yeah, and I see that your third cycle is planned for June 9th. Correct? Yeah, got it. Okay, does that sound fair? Okay, yeah, that sounds fine. And has she already?
Speaker 2:it seems like she's already ordered those new scans. I just had a meeting with the practitioner and I requested that she approve a low-dose scan, because I know there's multiple different potencies of these scans and I haven't gotten an answer back. But again, I'm trying to conserve my radiation exposure as much as possible because I don't know what's in front of me and all these scans add up, especially these CTt scans, and I just want to minimize as we're going forward because I don't know what's in front of me. Does that make sense?
Speaker 1:don't mind me asking what is? What are the uh kind of other uh labs that you were uh getting and of what was like the um, you know what?
Speaker 2:I just received, a, a, a from a doctor that I'm working with, separate from all this, and hang on a second, I don't know if it has a name on it. He sent me a link and I haven't even had a chance to open it yet. What I can do, let me see if I can locate it here real quick. Okay, so this is an article he sent me from MedPage Today, from Oncology and Hematology. It says New Blood Test for HPV Head and Neck Cancer, tops, existing Test, tissue Biopsy, and it is an investigational blood test for human HPV positive or the cancer that I have, and based on whole genome sequencing investigational tests detected circulating tumor DNA with a sensitivity specificity of 98.7% as opposed as compared to 94.2%. I'm looking for the name of this thing. Anyways, I'm going to continue.
Speaker 1:I will yeah, okay.
Speaker 2:But it seems, it seems to be legitimate and I'll investigate it and see if I can order it. And it can't hurt. Maybe it can help.
Speaker 1:For sure and then sorry I may have missed it when did they plan on getting those new set of scans? Did they tell you?
Speaker 2:She said it would be about two to three weeks after the last round, so it would be probably close to the 1st of July, right around that time.
Speaker 1:Okay, got it, we'll plan Then. In that case, we'll just set up another follow-up in a month.
Speaker 2:Yeah, all right. Yeah, that's perfect.
Speaker 1:We'll do the scans with you. Okay, If you want to hold on for a moment. I'm just going to let Dr Ho know. Sure, we're ready for him and he's going to join, all right.
Speaker 2:All right perfect.
Speaker 3:Sir, give me a moment.
Speaker 2:Somebody works with Dr Ho. This is the radiation guy.
Speaker 1:Floriana.
Speaker 2:Hey, what's happening? Oh, you know what? I just butt-doubts you. I'm actually on a call with the radiation oncologist waiting for him to join. I'll call you back. All right, bye. Radiation, what are they going to do? Well, they're still wanting to do radiation. Did he notice it? No, I mean this guy that I looked at. He didn't ever see me before. So Dr Ho is going to come by. I told him you're sick. I said I'll just meet him outside. I told him you're sick, I said I'll just meet him outside.
Speaker 2:He wants a bunch of respiratory support and I don't think we have a bunch. But I told him I'd give him what we have. I'll make a new badge. I said I'll make a new badge.
Speaker 3:Does he want to wait?
Speaker 2:He wants to come today. I guess Doug's out, he wants to come by. Doug too, he's out from Florida. We can just go outside, thank you. Thank you, hello. Can you hear me?
Speaker 3:It's very faint, let me fix it. Okay, how are things now?
Speaker 2:Yeah, much better.
Speaker 3:Okay, great, great, yeah. Before. I guess, before we continue, dr Hanenbaugh, can you update me on what you two spoke about. Yeah, so me and Mr Gromline were just speaking, talking about how he fell. Right now, can you update me on what you two spoke about?
Speaker 1:Yeah, so me and Mr Gromine were just talking about how he fell. Right now he says that it feels like it responded very well to the induction chemotherapy. It feels like it's shrunk a considerable amount. He's waiting a new NAV-DX to be drawn on May 19th and he's going to continue this third cycle on June 9th. He told me Dr Navar right, yes, dr Navar is planning for a scan somewhere near end of June or early July. He had some thoughts about possibly. I mean he says he's, you know, obviously going to go on, go forward with any recommendations that we have, you know kind of research that he does. But he feels like he may be able to kind of continue with the chemotherapy, possibly try some other maintenance chemotherapy and may not need radiation in the future.
Speaker 3:Okay, well, it certainly is a personal choice. I think, if you know, if there's a great response from the chemotherapy, I would recommend a. You know what would be a reduced dose of radiation compared to you know, having started with the radiation, what we typically do is any areas of visible tumor we treat to about 70 gray, as any areas that we consider a high-risk whether there used to be tumor there or it's just kind of like the first region of spread we treat treat to about 60 gray and now the range can be anywhere between like 52 and 60 gray. So any of the elective areas we call it meaning there used to be tumor or it's just an area of high risk I would recommend getting at least about 52 to 54 per day. That would be my professional recommendation.
Speaker 2:Okay and, like I was saying, I'm not in any way being decisive about anything right now.
Speaker 2:You know this was a very difficult move that I had to make and I was able to research and come up with this therapy that I'm taking right now and it's been very responsive and I don't know if it's going to continue or not.
Speaker 2:So I mean, really, I'm going to judge everything by the outcome, clearly, and I'm looking at some additional blood work that can establish markers and maybe help guide us. If I was to get this thing to zero and we were able to establish some markers and do regular blood work, we would be able to know if it was to move at all and possibly, and and again, understand I I'm subjecting myself to radiation with these scans as, as we are, and there's a limit to that, and I'm really obviously just trying to do the most amount of good with the least amount of harm and and I'm not, you know, stuck on anything I just want to navigate this the best way possible. So really, the course that we're on is going to, you know, take us to July, we will have run the three cycles of chemo, done a scan and evaluate, and I think that's really our move.
Speaker 3:Yeah, yeah, I, you know that's our strategy as well, to do the most amount of good while minimizing the amount of harm.
Speaker 2:Yeah.
Speaker 3:Certainly the NAVDX, the blood test, has been a phenomenal tool and I think it's, you know it's excellent in catching cancer recurrences before they're like visible on exam or on scan.
Speaker 3:Their limitation, as we found, is that even in the presence of a negative blood test, we found that, within like six months or so, about one in three patients who otherwise should have gotten radiation end up having a recurrence, and oftentimes it's like a recurrence, where you end up having a recurrence, and oftentimes it's like a recurrence where we end up having to go back to the 70 gray as opposed to getting away with a lower dose Now would that be?
Speaker 2:are those cases where there was a maintenance chemo in place?
Speaker 3:No, no, because for non-metastatic oral pharyngeal cancer, we've moved away from doing a chemotherapy-only based strategy, so we really don't have any studies to see someone. In your specific scenario, I'm extrapolating data from patients who've gotten surgery first and have had enough high-risk factors to warrant recommending radiation therapy, and they opted to get observation as opposed to doing radiation. So it's a different scenario, I agree with that as opposed to doing radiation. So it's a different scenario, I agree with that Instead of getting chemotherapy, as you had.
Speaker 2:They had surgery Right and understand I've got a pretty good research team that's going through looking for, you know, the evidence that would show us just as I was able to come up with this cocktail that is working. Not saying that I got the answer or even will have it, I'm just saying that I'm going to work to hopefully find one. And you know, again, I'm working with you guys in the best possible way. I want to be well and have no cancer in me and live a long life, so that's my goal here, exactly, yeah.
Speaker 3:As long as you understand that we are deviating from what we consider standard of care, I'm happy to you know, support you in this current approach that you wish to continue.
Speaker 2:Well and again, it may very well be that the best answer is what you suggest.
Speaker 3:So I'm not necessarily deviating from anything, I'm just saying we're all that you know, your strategy ends up working and it continues to work, I I certainly would be happy like I wouldn't be upset at all perfect, perfect, well, good, I, I, I really um, you guys are a phenomenal team.
Speaker 2:I'm really enjoying well, if there's an enjoyment here at all, it's the fact that you guys all seem to be on the same page and we're working together, and I appreciate that a lot.
Speaker 3:You're very welcome. You're very welcome. Okay, so let's schedule another video call like this, maybe after your next set of scans.
Speaker 2:Okay, that sounds perfect. Do you have a date for those scans? I know she is working on getting that ordered right now, so I don't have the date yet, but we just had a meeting about a week and a half ago and I just met with a practitioner a couple days ago and I should have an answer within the week or so. Okay, perfect, perfect, and we'll be on the lookout.
Speaker 3:It's going to be very easy and straightforward for us to schedule a video follow-up, like we are today. Perfect, you're welcome to call if you know a date you'd like to meet again, or we'll just kind of be on the lookout and call you Sounds like a plan.
Speaker 2:And how did everything turn out with the dentist? I know you were I'm still. What happened was this thing had gotten so critical I needed to do something and I was going from one dentist to another and they went from wanting to pull all my teeth out to wanting to pull three teeth out, and it was just chaos. And I have a limited budget to operate with. I don't have dental insurance, so I was trying to navigate this. I was able to get this chemo treatment. We got the port installed, moved forward on that and I've just been dealing with the chemo. So I have still to go back and get that resolved, which I will do, but while I'm doing the chemo, they really don't want to do any dental work.
Speaker 3:Okay, reasonable yeah any other ways we can support you at this time no, no, you guys are awesome so we'll probably see each other again, maybe probably around six weeks. That's my rough estimate, but whether it's four weeks or eight weeks, we'll make sure to see you, like a week after your scan sounds good, I'll be here all right all right, thank you very much.
Speaker 2:All right, take care. All right. Well, this has been a subscriber edition of the Healthy Living Podcast and this was a peek in on a conversation with a radiation oncologist. Hope you enjoyed it. Talk soon.
