This module on how to choose cancer treatments answers these questions:
1. How do you know if a treatment will work?
2. What are the key questions to ask?
3. How can you get useful answers to difficult questions?
4. What should you do when your doctor can’t help you?
When asking questions online, for example in a cancer group on Facebook, always follow these steps:
1. Give all relevant background info especially your diagnosis and the treatments you’ve had so far, and your location.
2. Remove anything subjective.
3. Read your post out loud before posting then edit it.
4. Make your post easy to read.
– Add line breaks especially on mobile device
– Use lists
– When mentioning a drug always put the generic name too eg. Avastin (bevacizumab)
– Avoid abbreviations, or write the full version too eg. NED (No evidence of disease)
5. Include only one clear question or request.
This is the 7th module of the cancer course that I’m putting together for Making Cancer History, and it’s all about making very difficult treatment decisions.
It’s really important to remember when you’re dealing with cancer, there are only two possible scenarios. Either your cancer is curable. Somewhere in the world, hopefully in your country, hopefully quite close to you, many cancers found at an early stage are treated with curable intent. For some reason Radiologists call this “radical intent”, so if you’re talking to a radiologist and they say” the purpose of this treatment is being done with radical intent”, that means they think that it is potentially curative.
Or, your cancer is not curable yet. Sadly, the vast majority of late stage cancers are not treated with curable intent. Late stage cancers are typically when a cancer has spread to distant places in the body, but not always. Some cancers are stage 4 if they’ve spread to a certain number of lymph nodes. So the spread could be quite local, but if there’s a certain number of lymph nodes, that is staged as a stage 4 cancer.
There are some cancers that are quite often treated with curative intent, even at stage 4. An example of that would be colorectal cancer, if it’s spread to the liver, maybe one lymph node, in some countries the standard care would be to treat that with curative intent – surgery to remove primary tumor in the intestine, then liver resection and lymph dissection. I don’t know why they call it dissection when you’re taking out lymph nodes, but surgeons always call it a lymph node dissection.So even some stage 4 cancers can be treated with curative intent.
But really those are the only two scenarios. You’re in one of those situations – either your cancer is curable currently somewhere, in which case you need to track down that treatment and be able to access it logistically. Sadly that often means financially as well. Fortunately an upcoming module is all about crowdfunding so that will be useful to you.
But if you’re in the second scenario, which most of us are in these sessions, then the cancer is not curable yet, or the cure rate is so small that we don’t even want to be semi-hopeful about it. In that case, what we need to do is still access the best possible treatment, but with a view to more treatment in the future. We need to somehow access the emerging treatments, or be ready to access them. By accessing them I mean, be physically ready – your physical condition has to be good enough.
That is going to influence treatment choice and in the majority of cases, your oncologist isn’t going to agree with that, because there’s a very strong mentality in oncology, that if it’s early stage, try and treat with curative intent. If it’s late stage, then you’re offered palliative care. Palliative care – think of that as pain reduction or reducing other side effects, and also extending life.
But what I found with the newer emerging treatments, is that the line between palliative care and curative intent is blurred with the newer treatments, because the best treatments you can get tend to damage your body less and damage your immune system less. They tend to open up the possibility of more treatment, instead of traditional cancer treatments that reduce the possibility of treatment.
If you do traditional radiotherapy, with many of the forms of radiotherapy, it’s one chance. You can’t do more radiotherapy to the same place in the body. If the area was of a certain size, then you can’t do any more radiotherapy. Because with radiotherapy, the radiotherapist has to consider the local dose, plus your total body dose. That can be exceeded with just one course of radiotherapy.
So if we want to be in a position where we’re able to access emerging treatments in the future, we need to choose treatments that aren’t going to damage our body too much, and that’s difficult. Your oncologist may see things very differently, because they have this mindset of “The cancer spread, the best we can do is try and make the patient comfortable and slow things down a bit”.
The approach I’ve taken, which has somehow kept me alive for 6 years instead of the 7-9 months that I originally had, or maybe a year or even 15 months looking back, the approach I’ve taken is to have multiple treatments at the same time.
That means that certain, very extreme treatments I can’t do, or wouldn’t think about doing. For example with colon cancer, there’s an extreme treatment called HIPEC. It’s called high PEC because that’s one of the steps. There are typically 3 steps to this treatment. It is very extreme, and when I was looking into it in 2016, I was very close to taking it. I sat there with a leading gastrointestinal surgeon in Tokyo, trying to decide whether or not I should take it or not. I decided against it because at least in 2016, the way it was done would be limiting options in the future, because it’s a very long surgery (6 -12 hours of surgery) and using some very toxic heated chemotherapy.
If I was in that same position today, maybe my thinking would be different, because the treatment has improved. The treatment protocol has improved at least in many countries, certainly in Japan. So 6 years later, that same treatment has been done quite a bit and a lot more is known about how to select the patients, and how to minimize the morbidities, the complications, minimize the chance of that. My thinking may be different or potentially different, but in 2016, although I thought this treatment is potentially curative for stage 4 colon cancer, I decided against it and I took another path – quite the opposite in fact, like combining many gentle treatments.
Some of the gentle treatments work very well, like sometimes immunotherapy. Some of the gentle treatments probably give you a marginal benefit, but if they’re gentle, you can keep going.
I’ve had a treatment called Regional hypothermia. In Japan, I may be the cancer patient who’s had this more than anyone else. I’ve had something like 230 times, because at least in Japan, it’s a relatively cheap treatment. It’s a 40 minute procedure that you can do every week. It’s very uncomfortable, but no side effects whatsoever. It’s very uncomfortable doing it, they turn off the machine and you’re fine, and it helps chemotherapy and radiotherapy work a bit better. It seems to also have an immunotherapeutic effect, so it can help your immune system see where cancer is. The effect is probably very slim, I mean we’re talking about a few % improvement over not having it.
However I absolutely detest chemotherapy. I did it for five years. It was very unpleasant, so if I can do something that makes the chemotherapy a few %better, then I will. So that would be a key bit of advice.
Obviously I’m not giving medical advice, but a key bit of advice I’d give is to look at what treatments you can have that should be able to enhance the treatments that you are having. Also, when you’re making decisions about which treatments to have, you need to ask if I have this treatment, how does it limit my options in the future? Conversely, would this treatment potentially give me more options in the future? That’s becoming a more usual thing.
Here’s another example – many cancers spread to the liver. The liver is the third biggest organ in the body, after the skin and brain, then liver in that order. The liver has 500 jobs. It has this unique dual blood supply by an artery which is usual, but also by the portal vein. Cancer tends to spread there because of the dual blood supply. For some cancers, liver surgery is recommended if the patient can have it. For reasons that I don’t really understand, doctors like to use the word “indicated” instead of “recommended”. They talk about indications, so you’re reading about a treatment, it talks about indications – that’s basically who should have the treatment, and the opposite is a contraindication. I don’t know why these people can’t use proper language. Contra-indication is a reason you couldn’t have the treatment.
In many cancers, if it’s spread to the liver, liver surgery is an indication. But the liver is one of our vital organs, so liver surgery might not be possible. An option that emerged as a palliative treatment was RFA- radio frequency ablations. That’s putting a special needle into the tumor in the liver, and heating it up with radio waves to ablate the tumor, which just means destroy it. But what’s been found over the past few years, is that because that treatment is gentle, (I haven’t had it but I’m sure it’s incredibly unpleasant when you’re having it. In Japan it’s often done under sedation and local anesthetic, not general anesthetic) but it’s gentle on your body. It doesn’t cause decrease in liver function, so you can restart chemotherapies pretty much straight away if you’re on chemo. Because it doesn’t damage the body much, it actually opens the possibility for liver surgery.
So if you’re told you need liver surgery but you have an unresectable liver, you’re being rejected for liver surgery, then looking for that option of RFA may be a really good path to take. Because if you have too many tumors in the liver for it to be resected, or the tumors are pushing against the big blood vessels, or the tumors are very spread out, it’s not realistic to cut them out, RFA may be an option. You may be able to have RFA for some of the larger tumors, or the tumor that’s pushing up against the hepatic artery. That’s a situation where having a treatment opens up options for other treatments.
For some reason, oncologists and specialists really don’t want to talk about this much. It’s particularly bad in Japan, because doctors here don’t want to disappoint patients. so they don’t want to say “ if you have this treatment and it goes well, you can have this other treatment.” They’re very wary of that, and sadly there’s a cultural thing within oncology as well, that specialists are very skeptical about each other’s treatments.
I’m skeptical about all the treatments, because I’ve actually really looked into them, and lots of them – their evidence is very flimsy. But they’re very skeptical about each other’s treatments. This is why it’s really hard to get a RFA specialist to talk with you, or particularly talk with a surgeon about the possibility of doing RFA, leading to liver surgery.
Another example could be lung tumors in both lungs. It’s not really possible to do lung surgery, but now with these gentler radiotherapies like the particle-based ones – there’s the carbon ion or proton beam therapy, or these neutron capture therapy – these very gentle radiotherapies or things like CyberKnife, Tomotherapy and Blu-ray. It may be possible to treat the tumors in one lung where they are spread out, and then do wedge resections, to remove part of the lung tissue in the other one.
All these possibilities that oncologists for some reason don’t like to talk about, cultural or otherwise, they have their reasons, and unfortunately patients – we have to search out these options.
When you’re told you are eligible for treatment or something like that, then finding all the ways around that stumbling block are really important. If you’re told you’re not eligible for immunotherapy, then a very sensible question would be, “What trials are happening now using this immunotherapy for patients who are not eligible for it?”
An example I’ve given in previous modules is there’s a whole type of immunotherapy called checkpoint inhibitors, or they talk about blockade inhibiting or PD1 or PDL1-based treatments. It seems that the results for these treatments are good only in patients that have a thing called “microsatellite instability”. They have a high level of mutation in their cancers. But since ~ 2018, there’s been some trials for patients who shouldn’t get a good response for the checkpoint inhibitors, but they’ve combined them with other drugs. In a small but significant % of the patients, they have got a good response.
So it may be that you’re told a certain drug wouldn’t work for you, and yet there may be trials going on that would make it, or potentially make it work for you. A question would be “Could we do a one-patient case study at this hospital?” You’re going to get a much higher chance of a “yes” if you’re at a teaching hospital, because teaching hospitals do far more research and far more case studies.
I’m not sure how it works in most countries, but at least in Japan this process can be a bit slow, because your oncologist or whoever the specialist is, would usually have to talk to the Ethics Committee, and say “we have this patient who will usually be rejected for this treatment, but some trials are going on in other countries which the patient can’t access, but could we do it as a one-person case study here?”
If you have a very rare cancer, I’d say that’s a path you should be strongly pursuing all the time. Sadly and stupidly, not enough research is done with rare cancers. If more research was done into very rare cancers, it’s very likely the information would be relevant to a huge number of patients, because there are similarities between different cancers. Certain cancers behave in certain ways, and actually looking at the exceptional unusual cases, will probably give better information.
If you are in a situation where you’ve got one of those rare cancers, then looking for a path where you can access treatment, for example a drug that has just been approved in another country – you can sometimes still access that drug directly from the pharmaceutical company. This is often called “compassionate drug provision” or compassionate care, this kind of thing.
If you see a trial – there are trial databases that you can just go online – in the UK, Cancer Research UK has a trial database; there’s an NHS trial database as well, but also you could look at health.gov which is the US massive health portal. Their trial database lists trials all over the world. So you may see a trial happening in another country and you think, well there’s no practical way for you to get there and get involved, but could you access that drug directly from the drug company? So look up the drug company that’s doing it, and you try and make a compassionate case of why you need to be provided this drug. You say “I’m here living in Newfoundland, and in Canada, we don’t have any trials. Can you talk to my local hospital and provide this on compassionate grounds?” Maybe give some compelling reasons for why they should.
I have a very common type of cancer unfortunately, colon cancer. But if I had a rare cancer, that would be actually the path I would be looking at most of the time. It’s very overwhelming dealing with any of this stuff. But trying to choose treatments that are not standard, recommended by oncologists and stuff, that’s a thousand times worse.
I found it helps to be ultra organized about it. For example, make a folder where you keep all the information about different treatments. Be really familiar with the standard treatment. There are various terms for standard treatment. The one that we see most is “SOC” – standard of care. (How do they come up with that, why isn’t it “standard care”), or best practice or standard therapy.
It’s really important to really understand the standard of care, and where it came from for your cancer and your cancer stage. Not least because you may want to discuss, or possibly argue with specialists about why they should help you access different care. If you know about your standard of care for your treatment for your cancer stage, it makes it easier to create a compelling case of why you should be referred to a certain specialist or that kind of thing.
Also, you want to find out about all the emerging treatments. This is surprisingly easy because now with Google, we can find all these very hyped press releases from pharmaceutical companies. But it’s good, for example, to look at the ASCO website (the American Society for Clinical Oncology). They have a huge conference every year. Oncologists and specialists go from around the world and people report on trials there. Usually when we hear about a trial in the mainstream media, it’s because the results have just been announced at ASCO.
Thinking about it, those trials will have generally started 3 years ago, possibly 5 years ago. So at least we want to know about the ones that are coming to an end, and look at the treatment possibilities there.
Another idea and another question to ask your oncologist is, “What trials were started 4-5 years ago for this, or what were you impressed by or excited about a few years ago?”, because those are the drugs that are just about to become available.
I often see in online groups, people will share a news article about an animal study, and they’ll be asking “What do you think of this – here’s a yogurt drink that seems to help mice overcome cancer”. The problem is of course, animal studies are years and years away from human use. When we look at early stage trials in humans, then we might get a medicine 5 years later. So now in 2022, we really want to be looking at 2016, 2017, 2018 – what was the hype around, because some of those things would just be about to come to market, but we can potentially access them early. As I said, contact the drug companies and say “I read about this trial, it was happening in 2018, what happened, have the results been released, are they going to be released soon, is the drug coming to market?”
This is an insane amount of work, but the payoff is potentially living quite a bit longer.
Also, it’s really important to have another folder with all your medical records in. It’s really vital, every time you have the blood test, ask for print outs. Ask for printouts of the reports from surgery, from scans – get your scans on CD, because if you hear of a potential treatment somewhere else, you want to know if it’s for you or not, very quickly. So having all that medical data is really important.
There’s been a lot of interest in the last few years, about different ways to both monitor cancer with blood tests, and also look for new treatments. This is often called a liquid biopsy. Liquid Biopsy is a very clumsy general term. People can often mean full genetic testing, eg genome testing. But sometimes liquid biopsies are more focused on measuring circulating tumor cells or free DNA. These things are all pretty inaccurate. Actually the full genome testing is semi-accurate, but it’s often only part of the picture, because especially with late stage cancer, different bits or different parts have different mutations, and tumor cells will be breaking off or escaping from different parts of the tumor. So you might not catch the whole genome.
But the idea to do this kind of testing, is that you may find mutations that match to certain either treatments available, possibly for another cancer. The go-to example that I always give, is that a certain % of colorectal cancer patients are HER2 mutants. We’ll have the HER2 mutation, which means they may benefit from certain targeted treatments for breast cancer.
Knowing the mutations can help you make good treatment decisions, because potentially if you’re being offered a standard of care which doesn’t have a happy ending, but if you’re able to find several alternatives, it may shape your thinking.
In my case, I’ve turned down treatments that are good robust treatments. Just because they’re good in a strange definition of the word, where it may help you a bit but it’s the best we’ve got, so sorry but here you go. I’ve turned down some of those treatments and pursued others.
Another key question to always ask is, “If I don’t have this treatment now, can I have it later? What are the consequences of that?” You do not often get a great answer when you talk to surgeons about this, because surgeons want to do the surgery now. If you are fit for surgery, then they want to do the surgery now, because potentially it could be more tricky for them to do later on. That makes sense, but from a patient’s point of view, sometimes we can try another treatment, or sometimes it is worth the risk of trying another treatment, and then doing surgery if it doesn’t work.
A very good example of that would be radiotherapy for a lung tumor. If you have a single lung tumor, you may be recommended lung surgery. When I had a single lung tumor in my right lung a few years ago, I was told by the surgeon he could remove it by doing what’s called a “wedge resection”. That’s just taking a chunk of the lung out, so you take out the tumor and a little bit around it for safety. He was saying it would be a 3 cm incision via keyhole surgery. I asked the success rate and he said essentially 100%. In my case it was a very straightforward surgery.
But I’m averse to surgery. I’ve had some big surgeries. Surgery is not fun. So I said, “well if I have radiotherapy on this tumor and it doesn’t work, could he still do the surgery?” and he mumbled and then admitted he could. I said “I’m thinking of having Tomotherapy”, which is a very gentle,precise way of doing radiotherapy. It’s scanner guided, so done with a CT scan for very accurate targeting, and it’s multi-beam so it doesn’t damage healthy tissue too much. He basically had to say “Yes you could do that, and it wouldn’t really be any complication if then the tumor didn’t wasn’t destroyed fully by the radiotherapy”. So I went to speak to the radiotherapist again. The radiotherapist said “For this size tumor ~7mm at that time, you could do Tomotherapy with a success rate of ~80%”.
Now 80% versus almost 100 % – I chose the 80%, because I knew if the radiotherapy didn’t work, I could then go for the wedge resection, and generally I like to avoid surgery because surgery suppresses your immune system a lot.
That’s probably why sometimes after surgery, there’s a resurgence in cancer. Many patients assume it’s because the cancer got spread around. My understanding is that was a big issue in the early days of oncological surgery, but in most countries now, surgeons are very good at not spreading around cancer. It does potentially happen, but they’re really quite good at it. So it’s more a case of having the surgery that causes the immune suppression, which allows the cancer to rebound if there’s microscopic cancer left, or if there were tumors that couldn’t be removed for whatever reasons.
In my experience, I’ve gotten better quality answers from the specialist when I ask them very directly, “What would you do in my situation, what would you do if your child was in my situation or a close family member?” I don’t know why this is. It shouldn’t work, but it seems to, and it’s kind of related to this other question that you should always ask, which is “What else should I be looking at?”
I have found that oncologists tend to talk a lot about chemotherapy, because that’s what they’re most familiar with. They’ll talk superficially about other people’s specialties. When you talk to other specialists, they will tend to talk about their specialty. But simply saying “What else should I be looking at, what other questions should I be asking, what are the types of specialists should I be meeting? – doing that seems to get more useful information.
I’ll give an example. I had some para-aortic lymph nodes that showed up as cancer on a PET scan. These are deep in the abdomen at the back. I was talking to a surgeon who was saying “The surgery is too difficult”. I asked a friend who was a doctor, and he said “You should talk to a kidney surgeon, because kidney surgeons, when they’re dealing with cancer and around the kidneys ,often they are removing para-aortic lymph nodes as well.”
The surgery, although it’d still be challenging, was a potential path. In the end, I avoided surgery for that as well, with a combination of chemotherapy, radiotherapy and immunotherapy.
But still it was another treatment path that was potentially open to me, just from talking to a different type of specialist.
If you’re in a situation where the options being provided to you are really limited or unattractive (the options being provided by the oncologist), there are other places to turn to. I’ve said before, you could talk to drug companies directly. You can contact Research Institutions directly. They’re generally not set up to deal with patients, and you’ll generally be told that they don’t take patients directly. But if you keep pushing and finding ways through, you can get some success that way.
Drug companies – you’d think they wouldn’t be certain to deal with patients at all, but many of them will have a Patient Liaison office, or they may work with certain research institutions or certain research hospitals which they may refer you to.
You can talk to other patients as well and that is a big opportunity, particularly with the web. There are also plenty of challenges as well, because sometimes the patient’s understanding of their situation is not particularly accurate. Sometimes the situation can be really complicated. You may understand your situation really well, you may post in an online group about your situation and say “Have you heard any treatments that would work for me?” You get a flurry of replies by people saying, “I’m in exactly the same situation and I’ve been recommended this treatment”. But their understanding of their situation may not be particularly correct. So you do want to be careful of that.
When I’m posting online asking medical stuff, I have some steps I go through. One thing is I make sure that I give enough background information, so that people can give useful answers. Often I see people posting on online groups, where they just haven’t given enough information. So they get a bunch of replies, but they’re mainly questions or completely inappropriate suggestions, and that wastes a lot of your time. Trying to think if someone didn’t know anything about my situation and I read this thing that I’m just about to post on Facebook or a cancer support forum, if a stranger was reading this, would they understand my situation enough to give a useful answer?
Particularly you need to say what treatments you’ve had, and particularly you need to say your physical location. I’m in a lot of online groups where you’ll have patients that are based in the UK, for example, asking questions and not mentioning that they’re in the UK. They’re getting replies like “you should go and see such and such a doctor at Cleveland Clinic or Memorial Sloan Kettering, these kinds of places in the US, which are potentially very challenging for UK patients to get there physically and financially, particularly if you’re in a bad way from cancer.
Also when I’m going to ask a question in an online forum, I look over what I’ve written and I try and remove anything subjective. As I’m sure you can guess, I’m often kind of irritated, cynical and skeptical when dealing with medical situations. I have a tendency to write irrelevant things about being given data slowly or this kind of thing, that are not really relevant to the question at all. You want to cut out any of that, because someone reading your question, they’re generally going to scan through it. You want it to be detailed but be concise, so removing any extraneous information.
I always find it’s really helpful to read your post out loud before posting it. That often will let you spot something which is ambiguous, so it might be misunderstood, or you’ve put in something emotive and irrelevant. If you’re posting online, it’s really important to make your thing physically easy to read, which means putting in line breaks, particularly if you’re posting from a phone.
When we post online from a phone, you tend to get a solid block of text, which just looks hard for people to read, even if you’re posting online on Facebook. For most online forms, when you hit “enter”, it posts straight away. But if you hold down shift and hit enter, then it will do a line break for you. Use lots and lots of line breaks, and lots of numbered lists, to make it all very clear.
The last thing I’d say about posting online is that it is good to have just one clear question or request. Something like, if you’re in a similar situation to me, please tell me 5 treatments you’re looking into. Or, if you’re seeing your specialist in the next few weeks, please ask if they accept patients from abroad. Something that’s really simple and clear, and then you’re much more likely to get a useful answer. It’s a terrible waste of time to be posting on all these online groups, getting these replies, reading through and seeing that people have misunderstood what you wrote about, asking a lot of questions to clarify. Or your post has been emotive and people are writing stuff about being positive.
So it’s important to make use of the online forms, because it’s incredible that we can access patients all around the world, who have gone through treatments that we might be facing, or at least have looked into lots of treatments you might be facing.
Do be very wary though of course of people trying to sell you stuff, because there’s no reason to trust anything someone says if they have a financial incentive to push you towards a certain treatment. You’ll get quite good at spotting that quite quickly.
Hopefully that has been of use. For future sessions, when you’re making a treatment decision, a really big thing to look at is clinical trials, and that is the topic of module 8, so I hope you will find that useful as well.