Table of Supplementary quotes
Patient / PhysicianMotivations for participating in tumour biopsy study
Participating in clinical research
And I was pushing hard to… I asked several times for the doctors to put me in the clinical trials. What do I have to lose? At that point [Dr] agreed to send me to the clinical trials. […] And to come to the fact that sometimes, you know, you have to hope for the miracle to happen. You know, it’s come to that point. [PT-59 – reported mutation]
I’m bound and determined that I’m going to… if I don’t kick the hell out of it, I’m going to give it a good try anyway. […] When they did the follow-up CT scan the found a couple of spots on my liver that weren’t there before. So they kept me on chemo and did another scan. And, the spots were bigger. So they switched the chemo and they did another scan and they said, “Well, that’s it. It’s still growing. Everything we know to give you isn’t working. So we’re done”. And you know, so I asked them what my options were. And they said, “Well you could try a phase 1 trial”. And I said, “Sign me up!” You know, I asked the doctor, I said, “What’s… if I do nothing, what am I looking at?” And s/he said, “Several months, maybe a year and that’ll be it.” I said, “Well that’s not acceptable. Sign me up for the trial.” [PT-87 – no mutations reported] / I think the incentive for [patients] is really to take part in a study that might benefit them personally in the future as well as sort of the altruistic gain of contributing to research, finding out more knowledge that may help others… [DR-30]
So, expectations in patients are often disconnected with reality. And, some of that may be based on the interactions with the caregivers, the physicians that perhaps that they haven’t been given a realistic picture, but I also think that some of it may in fact be a protective mechanism that, you know, you need to have certain set of core beliefs or hope ...to... in order for you to keep on going. And, that’s always a very difficult balance. So, it is a tough thing for many patients in terms of actually maintaining hope, but at the same time a sense of realism. [DR-70]
Participating in research involving genome sequencing
I think…this is probably where the future lies because the genetic genome mapping is really a breakthrough…I mean, it’s just the beginning of the future of treating cancer. And I hope in my lifetime that things come up. [PT-59 – reported mutation]
I was so excited when they proposed, you know, this thing. It was exciting. And they were too, I guess. I had actually heard about this genome personalized thing by (inaudible). The journalist. And, that was... could have been four or five months earlier. And, I read it with very much interest of course. I says, “Oh my god, I can’t believe how...” I know there was no cure for cancer per se, but you say, “Oh my god, look...” I mean, I was so excited about this. [….] So when a few months later I was presented with this I was really excited by it.. [PT-16 – reported mutation] / It’s new ground…I think it really does set the stage for where the field is going…we felt very, very keen to take part just because I think this is the future and we wanted to make sure that we were involved in developing the technology. [DR-51]
The reason I’m very interested in this is that I see this as the way that our... that cancer care will move to eventually...You know, we’re keenly interested in getting in at the cutting edge. [DR-59]
Interpretations and uses of results of genome sequencing
Hope in results of genome sequencing
I was very glad at least to know what kind of mutation I have. So the next step was what exactly is the arsenal we have to at least fight what we know. What we don’t know we don’t know. […] So what’ they’re going to do is it’s a targeted drug. […. Dr] basically used the analogy of subways. So they’ve got to cut it off somewhere so that nucleus doesn’t get the message. And therefore that other chemo drug will attack the DNA and kill it. I think it’s great. [PT-59 – reported mutation]
So [Dr] said it was really good because it’s given me a few more avenues. Very positive biopsy. And [Dr] said that s/he thinks now the Hedgehog will be able to go in there and outsmart those new, multiple lesions in the liver and go in there and kill the cancer stems. [Dr] was really excited about it because s/he just… just by looking at the cancer cells there’s a lot of different avenues that s/he can approach with it. [PT-18 – reported mutation] / I’ve had a good news story. The good news was that…“well, listen, there was a mutation…And, they are running a clinical trial where they suspect that based on that mutation this treatment might work.” [DR-59]
So, I don’t really pin my hat too much on it identifying a genetic change that is, you know, quote, “treatable.” So, if that happens, I’m obviously pleased; but, if it doesn’t happen, I’m not shocked. [DR-65]
Disappointments/ challenges in results of genome sequencing
And, like, [Dr] said to me before I did it, it would open the cupboard door a little wider for me. It didn’t open the cupboard door wider. I was disappointed. I really was because, I mean... Like, people say, “Well, that’s a good thing.” I go, “No, it’s a bad thing.” Like, when they don’t get any results people say, “Well, that’s a good thing.” “Well no,” I said, “in this case it’s a bad thing.” So, s/he actually said to me last week, s/he says, “I don’t know why you’re here. Go home” because... s/he was kidding me again because s/he’s kind of, like, it’s, like, “Ok, now where do we go from here?” So, yeah, so it’s... I think that it didn’t solve any more puzzle than we hoped it would. You know, we kind of... But, I was ok with it. I mean, I wasn’t upset. I mean, I was disappointed. And, I kind of had th... You know, you always sort of have a hope on a certain way. So, it is; it is a disappointment. So, I did hope that they would find the thing that would... that we could say, “Boy, have I got the drug for you.” […] It might be a magic bullet gene that’s solely to me, right? That is mutated, but they don’t know why. You know, it’s not one that they recognized. I mean, there’s obviously some reason… something happened that gave me the cancer. You know, something turned it into cancer, right? And that form of cancer. [PT-24 – no mutations reported]
[Dr] said that they did the study and, “Unfortunately,” s/he said, “they can’t find a match.” I feel very, very (pause) how do you call it? I’m very disappointed because I’m looking forward to what they might… that they would be able to find something for me. But, s/he said, “Unfortunately they can’t find a match.” [PT-30 – no mutation] / I think the patients are certainly hopeful that going through this procedure was going to lead them somewhere else and lead them into a different therapy. And, when that doesn’t happen, then there’s a great deal of disappointment. So, that may not be a misunderstanding. That may just be just what it is. […] And, the major challenge that I have at my site compared to perhaps the centres that have, you know, phase one clinical trials at their disposal is the fact that there is no treatment attached to this. That, you know, if a particular mutation is found, then the patient has to... we have to seek out a treatment that may make sense based on that mutation. And, that treatment may be a clinical trial that’s far away. That treatment might be a drug too expensive for them to afford. And, I know from speaking to some of my colleagues, they have been reluctant to consent patients to this trial for this very reason. [DR-59]
So, the problem with this study is that there is no clearly defined (pause) benefit for the patient, particularly if you don’t have a lot of phase one trials with, you know, sort of targeted specifically at well defined pathway abnormalities, molecular pathway abnormalities. So, because there is no defined benefits for... even for most of these mutations, if you find them, we don’t necessarily have something that we can do with that information. It does leave the patients with little benefit for having had a biopsy. On the other hand, I think all of us understand that this increasingly has to be done so that we can identify patient populations who do have druggable targets and, you know, hopefully over time will enhance the interest of pharmaceutical companies in working with our population. [DR-16]
Anticipating inherited risk information
As cancer patients
Adding to cancer burden:
Well, I guess it depends on what stage. If I was attending these trials through my first experience with cancer, then yeah, I wouldn’t mind to know because at that time I thought I was cured. And, you know, if learning about other stuff meaning better prevention or, you know, changing lifestyle more or not changing lifestyle, or you know, to look out for certain symptoms so it could be detected earlier, year, I would like to know. But if I was attending this trial now to find out, no… because it’s like bad news on top of bad news kind of thing. [PT-12 – no mutations reported]
I think that I’d feel… my first instinct would be, ok, what now? You know, it would be like another kick in the teeth. Because the doctor said to me, my family doctor said “You do realize that you have more prone to heart disease now.” And, I said, “Well, wouldn’t that just be, like, the finishing touch.” You know, I said, “Kick me when I’m down.” […] You know, isn’t that nice? If one doesn’t kill me, I’m going to die from the other. [PT-24 – no mutations reported]
Not an added burden:
Well, you’re talking to a sick person, so it’s, like, cancer trumps everything. And so nothing else can scare me. [PT-26 – no mutations reported]
Well, I’m living with this, so what the hell’s the difference? What’s one more? [PT-27 – reported mutation] / And [for some patients] they’re just grappling with what they can do for their own disease. And then, they’re just not at the stage where they can actually understand that getting a genetic profile may have implications on their disease, but it also may have implications on their loved ones’ disease. And, so, they can’t handle it, but it’s really important. [DR-70]
I mean, when you’re talking that kind of testing, you’ve got a terminal cancer patient; something that you find in a germ line muta... in a germ line mutation is not going to have any impact on their health or care. It’s for their families. And, I would say a fair number of patients are patients who have kids certainly or siblings that, you know, siblings understand that that could be important information. [DR-64]
As family information
Well, I think it’d be important to know… like, for instance if Huntington’s was it. I can’t speak for my kids, if they would be tested that would be up to them. [Interviewer: How would you feel about telling them that kind of information?] Well, it’d be terribly hard. But I think both my sons are similar to me where they’d want to know. [PT-26 – no mutations reported]
I think if it’s something that could be prevented… it’s going to… it’s good to know, right for my children. I would like to know to help them out I guess. I wouldn’t be freaked by knowing that there’s a certain risk. […] I know like to know everything. [PT-85 – no mutations reported] / We’re talking about small, incremental risks which for the individual patient probably in some ways is going to be more outweighed by lifestyle choices rather than some small, inherited predisposition that doesn’t really change things much in terms of their risks. ... thinking about personalized cancer medicine, the heritable risk piece is probably not going to be as big a deal as we think it is. [DR-30]
…when we’re looking at germ line DNA that is definitely something that requires further counselling … I think that that is a piece that we need to be prepared for... Currently, if we’re to do any germ line genetic analysis for standard of care – like BRCA mutation testing, Lynch syndrome testing – that’s all conducted after a fairly rigorous counselling through cancer genetics. And, if we’re going to be taking this to a larger scale with more patients…maybe we are looking at the cancer genome, but we may stumble on a germ line mutation in the process, there has to be some availability of genetic counselling for the patient and family about the ramifications. [DR-59]