Hi all,
I'll first start with a disclaimer, I think this topic could be quite triggering for some people and the things I mention are common misinformation/conspiracy theories about cancer treatment. I want to just say I don't know enough about cancer, or anything for that matter, to prove or disprove my dads ideas. Some of them seem more outlandish than others, and this is not a post to discuss wether or not he is right or wrong for thinking what he does.
Its just a post to say he does think this stuff, and I need to find a way of making sure him thinking that doesn't result in him rejecting treatment completely and potentially being dangerous. I just wanted to let people know I was aware about the danger of misinformation and to please not think this is a post to discuss things of that nature. I just need to find a way to support him and make sure he does get the help he needs.
Last month, my dad was informally diagnosed with cancer in his tonsil and lymph node. It’s been a strange and frustrating journey so far, he’s had two biopsies, but both came back inconclusive. So while the doctors and oncologist are confident it is cancer, they still need to medically confirm exactly what type and stage it is.
He’s now scheduled for a third biopsy this week, which will be surgical.
Surgery isn’t really on the table as a treatment option - the doctors have explained that to reach the tumor, they would have to split his jaw, and since it also involves part of his tongue, he would likely lose some of it. Understandably, my dad doesn't want to go down that route.
The team have said that radiotherapy is the most likely course of action, possibly followed by some chemotherapy, depending on the results of the third biopsy. They’ve reassured us that the treatment is curative and that he will be okay - which, of course, is a huge relief.
But here’s where things get complicated.
My dad is somewhat of an "outside-the-box thinker" - or to put it more bluntly, a conspiracy theorist when it comes to mainstream medicine.You know those articles you read or TV shows you see about people believing you can cure cancer from diet alone, and that pharmaceutical treatments are just part of a money-making machine and the cure for cancer is out there but they don't want you to have it because it's too big of a money making industry? Yeah, he is one of those.
From the start, what’s scared me more than the diagnosis has been how my dad would react to the treatment plan. One of the first things he said was that he would not have chemotherapy. We were hoping surgery might be an option, but when that door closed, it hit hard. At first, he was somewhat open to radiotherapy, but still strongly against chemo. The oncologist has said we’ll cross that bridge when we have the biopsy results which makes sense.
In the meantime, my dad has been doing his own research. Initially, he said he would approach this from "both angles" - meaning conventional treatment and his own researched treatments like dietary changes (like cutting out sugar because “sugar feeds cancer”). But now he’s gone further down a rabbit hole. He recently read about taking things like horse dewormer (Ivermectin?) and other seemingly random remedies as a way to “cure” cancer. I don’t know where he’s getting this information from, but he firmly believes in it.
Yesterday, he had a dental consultation to check whether he’d need any teeth removed before radiotherapy, and it turns out three teeth need to come out. This news seems to have triggered a bit of a downward spiral. He’s now questioning whether to have radiotherapy at all and is leaning more toward “curing himself” through alternative means.
I’m reaching out because I wonder if anyone else has had experience with a loved one who holds these kinds of beliefs - and how you supported them. I don’t want to shut him down or make him feel judged, because I’m afraid that if I do, he’ll stop talking to me about how he’s feeling or what he’s thinking. But I’m also really scared. I’ve never had anyone close to me go through cancer before, and I just don’t know how to navigate this.
I wondered if anyone else had any experience with family members that had beliefs like this, and how I can help my dad. I don't want to shut him out or down by telling him everything he thinks seems crazy and really dangerous, I don't want to lose his trust and for him to not tell me anything anymore. I have been lucky enough to never experience anyone in my life having had cancer, so this is really a first for me. But I know what my dad is like, he truly believes in all this stuff and at his core deeply distrusts the government and NHS system.
His care team aren’t aware of the extent of his beliefs, only that he’s unsure about chemo. I get the sense he’s embarrassed to share more with them because he knows what kind of response he’ll get. But if he starts rejecting treatment, I feel like I’ll need to speak up… and I’m not sure how.
He has a girlfriend who’s been wonderful and supportive to both him and me but she shares many of his views, which complicates things further. I am the only person close to him that doesn't explicitly agree with his alternative ways of thinking.
If anyone has any advice or has been through something similar, I’d really appreciate hearing from you. I just want to help him without losing his trust.
Welcome to our community, I hope you find it both informative and supportive.
That does sound like a difficult situation to manage though good that your dad is still talking to the oncologist even though with the inconclusive biopsies something many never expect.
Hopefully, provided he talks to the oncology team they will encourage him towards more conventional treatment with perhaps some elements of supportive treatment of his own.
<<hugs>>
Steve
