Ragged Clown

It's just a shadow you're seeing that he's chasing…


How much do you want to know?

I made a new cancer friend on Facebook this week. I happened to mention that I have been doing a lot of research on my tumour type and she said “I would say not to do your own research as it will freak you out.”

I understand that research makes many people anxious, especially if the first thing they go looking for is survival stats. Some people with cancer would rather put themselves in the hands of their medical team and get on with their lives. Other people prefer to know as much as they can about their situation. You should choose the approach that works best for you.

So I’m just thinking it is better to just try to not research everything and trust them.

My friend thinks it is irresponsible to search for information on the internet because I have no medical training and if I just google blindly, the information I find is likely to be misleading and will scare me. I find that the opposite is true. Though it’s easy to fall for confirmation bias and to find articles that agree with what you already believe, it’s also easy to look for information that challenges your beliefs and helps you synthesize an opinion that you can ask your oncologist or surgeon about. I do agree that it’s a bad idea to google blindly though.

But you don’t really know what you are looking for.

When you first start looking for information about cancer, start with the sources intended for cancer newbies. The brain tumour charities have some excellent information for newbies, as do the NHS and sources like Mayo Clinic and Macmillan but, eventually, you’ll want to look for more detail and more evidence.

The newbie guides might tell you that there are several kinds of glioma, for example, and that you need a biopsy to know whether your tumour is a glioblastoma, an astrocytoma, an oligodendroglioma or something else. You can google oligodendroglioma or astrocytoma to find out more about that. Before long, you’ll be looking up terms like diffuse low-grade glioma and finding studies about the various treatments for your kind of tumour. When you have a better understanding, you’ll be able to ask good questions of your medical team and better understand their answers.

What does my insula do again?

At the start of your research, there will be lots of strange terms that can be overwhelming. What is a 1p19q codeletion? Why does it matter whether my tumour’s IDH gene is mutated or wild-type? If you start to get overwhelmed — or if an article is just too confusing — put it to one side and come back to it when you know more. Remember: the purpose of your research is not to find all the answers; it’s to help you ask better questions of your oncologist and to understand the answers that they give you.

Don’t buy the snake Oil

The truth about cancer: It’s expensive!

There is a lot of bad information on the internet and there is plenty of snake oil for sale. There are sites that tell you their special diet will cure your cancer or amazing medicine derived from marijuana oil is better than the approved treatments. These sites never have supporting evidence and their recommendations are never backed up by reputable sources like PubMed. A lot of these sites begin with a rant about how the health industry tries to suppress The Truth About Cancer and they end with a special offer to buy some snake oil. You should skip those. Don’t buy the snake oil.

Some of these sites can sound quite plausible. Here’s an example.

The prevailing theory of cancer in the medical world is that cancer is caused by genetic mutations that cause uncontrolled growth. But there is a competing theory — the metabolic theory of cancer — that cancer is caused by a metabolic malfunction which, in turn, causes genetic changes in cancer cells. As a result of this malfunction, your cancer cells lose the ability to metabolise lipids so switching to a Keto diet will limit the growth of your cancer. A simplified version of this theory that you may have heard is that ‘sugar feeds your cancer’. There was a clinical trial that tried to determine the effect of a Keto diet on glioblastoma but the results were inconclusive.

If you find a treatment or lifestyle change that sounds useful, you should check with your medical team. I asked my neurosurgeon whether the Keto diet would do me any good and he said “You can try the Keto diet if you like, but it won’t do any good.” I am glad I asked. I didn’t want to do the Keto diet anyway.

I trust my oncologist that he knows what is best for me.

I trust my oncologist too — and my neurosurgeon — but I trust them even more when I understand the research behind their recommendations. My neurosurgeon recommended that I have surgery to remove my tumour but there are several papers that say that the benefits of resection are questionable in a diffuse low-grade glioma (dLGG) and the possibility of neurological deficits is high.

The benefits of resection increase with the percentage of the tumour that the surgeon is able to remove. If the surgeon can remove 100% of your tumour, your survival prospects are better but the benefits drop off rapidly with less than 80% resection.

I asked my neurosurgeon…

Me: “How much of my tumour will you be able to remove?”
He: “Between 20% and 50%”.
Me: “That doesn’t seem to be a very good deal.”
He: “It is up to you whether to go ahead.”

I’m glad I did my research.

Four kinds of patient

I read an article yesterday that said patients (and the family members who care for them) will have one of four different attitudes to learning about their condition and their treatment.

1) I don’t want to know anything. Physician, heal me.

Some people find it really stressful to look anything up on the internet. If you just google blindly, you are likely to find some really bleak survival statistics and they will probably scare the shit out of you. The survival statistics mean very little, especially for brain tumours, until you understand more about your situation. Some people prefer to leave all of that to the medical team. That’s fine if it works for you.

If it makes you stressed or anxious to learn about your condition, you might be better off just living your life and letting your medical team take care of you.

2) I want to know everything.

This is me. I don’t think I can know everything but I need to know enough to ask good questions.

Smart Patients has communities for most of the common cancers and many of the rare ones.

I do a lot of research about my situation. I spend a few hours every evening reading PubMed, BMJ, Science Direct and other reputable sites. I bought a copy of Principles of Neural Science and a model of a brain showing the functional areas so I have a better understanding of how my brain works and what is going wrong with it. It doesn’t freak me out at all. It gives me the confidence to deal with what is ahead.

3) I don’t care whether the treatments will work. Just keep treating me.

I think this attitude can be quite harmful. It’s one thing to accept your doctor’s opinion. It’s quite a different thing to ask for more treatment even when the treatment is unlikely to help. I think this is especially bad for elderly people who ask for, say, chemotherapy when it is more likely to make them sick than to make them better. This is definitely the time to be asking good questions of your medical team.

4) I don’t like your opinion. I want a second. And a third. And a fourth. Will someone please give me the opinion that I want?

I think this is a variation on the previous attitude. If the doc says that your preferred treatment is unlikely to help, it’s a good idea to get a second opinion. Even a third, maybe. But if they all keep telling you the same thing, it’s possible that they know what they are talking about and want what’s best for you. If you keep asking for treatment that won’t help, before you know it you’ll be flying to Mexico to get a miracle cure (NARRATOR: it probably won’t help).

Learning about neurons with my study buddy

Phone a friend

My tumour type is quite rare but I’ve found several people online who have the same kind of tumour as me. They are a little further along in their adventure than I am so it’s useful to compare notes with them. They are all really interested in knowing as much as they can about their situation — and each other’s — so we all benefit from sharing our research. One person in our group gets anxious from researching online but she still likes to hear information from the rest of us. We call each other when we have a big event coming up to provide advice and comfort and we debrief afterwards to check that it went well. The information we share is empowering and comforting.

Which bit does the thinking?

Learning about your health situation can be comforting and empowering but if research stresses you out putting your trust in your medical team is probably a better option.

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6 responses to How much do you want to know?

Graham August 25, 2022

I share your attitude towards knowledge as a Number 2. Without doing my own research I wouldn’t have even been diagnosed by the NHS as my condition was hardly known and wasn’t even being looked for. Using the Internet wisely is important and if some cure looks too good to be true it probably isn’t any good. Using the results of an initial search to refine and go deeper can often bring rewards including exposing the fake solutions.
Ignoring statistics is a challenge – so good to think of oneself as an atypical outlier that will spoil the neat statistics for the future. No harm in imagining “Flying Pigs”
Best wishes

Claire ATX August 25, 2022

Pearl is so wonderful! I think she knows her input is vital.

Great article! Well organized. Clearly presented.

Glad to know you have an informed community. Well done!

Janet August 25, 2022

Great post, thank you. It takes all kinds and finding some friends with different but complementary approaches to being The Patient must be satisfying and helpful. Three of the four types you describe were represented in my small family group during my mother’s cancer experience, and I think your general descriptions are accurate. More specifically, the oncologist/surgeon called my dad Data Guy for his focus on record keeping and making sure the doc had ALL the info about my mother’s symptoms (relevant or not ;-), I was the daughter who asked precise questions that the doc didn’t remember anyone asking before in her 12 yrs of practice (thank you, Smart Patients!), my mother just wanted someone to make it all go away, whatever it took, however painful or uncomfortable. Knowing what Qs to ask is critical imo for best attention from the docs. Maybe I learned this approach from my experiences as a parent, learning how to get the most value out of the appointments with the pediatrician? Being assertive and asking precise questions paid off generally.

Norma Jean Galiher September 18, 2022

I’ve been in a Cx support group w/ all these types & the “just keep treating me even though there’s no chance anything is going to help at this stage” was just heartbreaking to watch play out in one wonderful, vivacious, courageous woman we all had come to love. She would tell us what great pain she was in and how she longed to do all the activities she no longer could, but then say that at her next aptmt. she was going to ask the doc “what are you going to prescribe next?” Over and over again, when it was clear she was very near the end and the doc had obviously started out w/ chemo- most likely to have been efficacious and, when that failed, on to regimen 2, 3 & 4, ea. w/ data making it far less likely to have miraculous results, so that suffering the side effects was for naught. This was a very bright woman, but with so strong a bias in this way that it was an enormous blind spot. One day she phoned me (the first time, asking me to tell her about hospice as the doctor she relied on totally had just “deserted her” and told her to sign up w/ hospice). She frantically called, interviewing several and, apparently, signing up with one, but doing so while experiencing off-the-chart stress levels. Within 4 days died horribly, terrified and hysterical, with strangers coming into her home, giving her no peace whatever. We grieved deeply upon hearing the news, not just that she “was too young” and we’d all come to care so deeply, but that it could have been otherwise.

A 2nd woman in that same Cx support group told us she’d extracted a promise from her doc that when the time came that there was no Tx left that would offer hope of giving her more time of any sort of quality, she would tell her and they would stop so that the time she had left would not be impaired by side effects of useless chemo-. She gave away almost everything, moved into a tiny cottage, got a little trailer and pulled it to several states to visit former internat’l and domestic high elevation mountaineering companions, spent lots of time w/ family & friends (apparently her cottage was full of them), in comfort. Then, when she tired, moved into her daughter’s living rm. where she had the grandchildren around her all the time up until her very quiet, peaceful journey’s end.

I have never forgotten the impact of observing the outcome of the attitude selected by these two unforgettable and admirable women.

    Ragged Clown September 18, 2022

    Two powerful stories, Norma Jean. I choose option number two.

    Janet September 19, 2022

    I am copying and saving your comment, Norma Jean. These are helpful”case studies” that I can imagine sharing with others in the future if you don’t mind. I definitely hope to have the clarity of thought to choose the second path for myself when the time comes. Thank you very much for this.

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