"I just want to reiterate that Alex at CTOAM...truly, if there’s anything else out there, over and above what the BC Cancer Agency has to offer, he finds it. And he makes sure that your oncologist is aware of maybe shifting gears a little. In my case, it went from chemotherapy being the only option to delaying that by two whole years. That is priceless." – Margaret
Read the summary below to learn about Margaret’s story with breast cancer. You can also see her case study to learn more about the precision oncology methods that CTOAM used to help her.
In 2006, Margaret was diagnosed with breast cancer. She had surgery shortly after diagnosis, then multiple rounds of chemotherapy and radiation through the BCCA [British Columbia Cancer Agency]. Afterward, she had a reprieve from breast cancer for seven years, during which time she was on hormone replacement therapy for five years.
Then the disease reared its ugly head once again – only this time it was worse. Margaret found she wasn’t tolerating the radiation treatment like she had the first time around. Her BCCA oncologist found a drug for her, but it came with a condition: she gave her a timeline of two years, after which, it would likely stop working.
As the clock ticked by, Margaret lived her life to the fullest, waiting patiently for a sign and continuing to explore options. One day, while out to lunch at a Chinese restaurant with her husband, she opened a fortune cookie that read, "Research shall bring considerable success with great results." Though Margaret doesn’t believe in fortune cookies, there was something about that message that hit close to her heart. Shortly after that, one of her sisters told her about CTOAM.
She called Alex and, after an hour phone call, immediately hired CTOAM to do her genetic testing and personalized researched. Shortly after that, she was put on targeted treatment – five out of six of which were fully funded (sometimes by the drug company and other times through public health care). This allowed her to delay intravenous chemotherapy for two whole years – an outcome that she emphasizes as priceless.
Margaret reflects, if she were to have any advice for someone newly diagnosed with cancer, it would be: "Hire somebody, like Alex, that can help you get this [genetic testing, personalized research, and advocacy] done. Because, you know, time’s not really a luxury when you’re diagnosed with cancer. And all you want to do – or, all I wanted to do – was to be able to say to my family that I’ve done the best I could. And, with CTOAM, I know I have."
Read this long-form interview with breast cancer patient, Margaret, to hear her full story about living with breast cancer, thriving despite challenges, and finding CTOAM.
What was your life like prior to your diagnosis?
My life, really, hasn’t changed that much, as far as activities go – I certainly have added things, and I actually think that’s a positive. Once you’re given the diagnoses, it’s important for someone like myself to be able to continue living my life like I have been. Certainly, you question regrets that you may have, make amends to certain people – but, overall, my life didn’t change a whole lot, except I did join a dragon boat team! That was new to me!
How did you find out you had breast cancer?
So, initially, I was diagnosed back in 2006. I’d been working for many years in an office and, unfortunately, two of the ladies over the years had been diagnosed with breast cancer, so it became important to me to have regular mammograms. And the standard for mammograms at that time, I think, was every two years. (I don’t know if that’s changed.) I was forty at the time and I thought, if I am proactive, then God forbid if I got the diagnosis, it would be early.
A year and a half after I’d had my mammogram, I actually felt the lump.
What went through your mind?
Well, you’re fearful, absolutely. Then you doubt it. You know, you go through every emotion that there is. I kept thinking, I’m healthy – I don’t have any symptoms, other than this lump. I had heard, right or wrong, that 80 percent of the lumps found are not cancerous, so you hang on to that. So before it was actually confirmed, I had mixed emotions.
In the end, a biopsy was done. But once I had the mammogram, I could tell on the technician’s face that something wasn’t right. She would come into the room and then go back and take another shot. You’re heart is slowly sinking. When she came back again for what could have been the third time, she said, “we’re going to give you an ultrasound.” So now I knew there was something going on.
She walked me across the hall and I had an ultrasound. I could tell from the look on her face, once it was over. She said that my doctor (my GP) would be getting a hold of me within a week, which is probably their standard comment with regards to the results. I left there pretty much thinking it was not going to be good news.
When I got home, I actually called my girlfriend who’d been dealing with cancer ten years earlier (a different type of cancer). As I was sharing with her why I had this sinking feeling, a call came in on the other line and I immediately took it. It was my GP. I didn’t have to say anything other than, "I recognized your voice," and I knew then that it was likely breast cancer. So even though I hadn’t had a biopsy at that point, she was clear to me in saying that they believed that’s what it was.
Margaret was scheduled for surgery.
When I went to see the surgeon, he showed me the mammogram and the white spots on it. In my mind I thought, well, they’re little; it’s early and he said it was small. He did an actual biopsy test in his office and then immediately said, "I believe it is breast cancer, and we have to have it confirmed by having it actually tested. I will be doing surgery."
At that time, it was standard to remove three lymph nodes to see if the disease had spread. [My surgeon] called me and said he was sorry to tell me that it had spread in all three of those lymph glands. And that, because of this, they were going to do further surgery and take out another eight lymph glands. I had a total of eleven removed.
I remember his phone call. It was at night – he phoned me at home as soon as got the results, and said, "unfortunately, it has spread even further, and seven of the eleven lymph nodes have been affected."
I was standing up when he told me that information and it was like an electrical shock went through my body. I’ve never experienced that in my whole life. I had to sit down.
I had gone from – in, seriously, probably ten days – from looking at little tiny white spots on the mammogram, thinking – or, hearing – that it was a small tumour – to, not only had it spread, but into seven of my eleven lymph nodes. And I was told, at that time, that I would be getting chemotherapy and radiation.
Yeah, your heart...it’s sickening, actually. Prior to me getting that phone call, I’d been in the denial stage (again).
How were you feeling physically at that time?
Again, I felt totally normal. There were no signs or symptoms. Which boggled my mind, because my father – probably twenty years prior to that – before he received the diagnosis [of his cancer], he was sick. He looked sick. Were we surprised when we actually got the news? Not at all. [He eventually passed away from cancer.]
I was a picture of health. So, it just didn’t compute. It really did not compute.
What happened after you’d received the news that it was bad, and that you’d need to start chemo and radiation?
November 1st  was when I got the official breast cancer diagnosis. I’m the type of person who just wants to look ahead – I don’t want to look back. And certainly I’ve gone through different thought processes since then. But my initial thought was, I’m with the BC Cancer Agency: I’m in good hands, they’ll make sure I’m looked after. So I don’t need to worry about that, I just want to look ahead.
The timeline? It was lightning fast at first [the initial surgeries]. But then I didn’t see my oncologist until January. Because it’s Christmas, you know, and all these different things. It was excruciating, the wait. That’s from November 1st, so it took two months.
It’s brutal, I tell you. The waiting...if it’s not as bad as hearing the diagnosis, it’s right up there. Anyhow, it was horrible – just horrible.
The two months that Margaret waited was just to have an initial appointment with her oncologist. Then it would still be some time before beginning treatment.
Margaret then did six months of chemotherapy. She also went back to work on the advice of a neighbour who’d also had cancer. Margaret then started radiation and stopped work again. In between all this, she was travelling, renovating a second house with her husband, and generally embracing life. She went on HRT for the standard five years, and for a total of seven years (including her time on HRT), things were clicking along pretty nicely.
Unfortunately, Margaret’s cancer came back. It was more difficult the second time around, both emotionally and physically. Rather than tolerating the radiation well as she had the first time, Margaret experienced a severe reaction to it. BCCA changed her medication, which her oncologist mentioned would likely stop helping in just two years. – after which intravenous chemotherapy would likely be Margaret’s only option.
So I get this information, that it will likely come back in two years. I am beyond crushed. My husband and I drive to get Chinese food, in Victoria, for lunch. We’re very quiet, we’re both trying to wrap our heads around it. At the end of our meal, you always get a fortune cookie. I open my fortune cookie and it says, “research shall bring considerable success with great results.” And I – trust me, I don’t believe in fortune cookies – I just stared at this fortune cookie, which I still have today, and I kept thinking, is this a sign from somebody to say it’s going to be okay? That there’s going to be some research that I will benefit from? And I held onto that hope. So that’s when the seed was first planted for me.
Margaret’s sister sent her an email suggesting she contact CTOAM, which her sister had heard about through a friend of a friend.
In other words, her suggestion was going to back to the fortune cookie’s theme of research and success. So I immediately went to [the CTOAM] website. I knew my clock had run out
I read everything on the website. It was all in keeping with my philosophy: science-based, peer reviewed, the latest that’s out there. It pointed out that the BC Cancer Agency and all those doctors work the best they can with the tools and the funding they’ve been given.
And [that made sense to me because] I’d kept thinking, “there has to be something waiting in the wings at some point before they get the funding.” That makes sense to me; I totally get that. So my husband and I, we filled out the application right then – I wasn’t delaying – and faxed it to Alex. He called me back immediately.
I swear I talked to him for over an hour. I had a lot of questions, and he took the time to go over exactly what it was that he was offering. And that was studies to match the drugs to the mutations that were driving my cancer. So I hired him! At the end of the conversation, I hired him.
He immediately, in lightning speed, arranged to have my DNA testing done in order to identify what was driving my cancer.
Within days of hiring Alex, he got me an appointment with Dr. Klimo. As a matter of fact, it was so quick that I couldn’t even make the first appointment! My head’s spinning – it’s like, we go from months of delays [in standard care] to I actually don’t have time!
So, I saw Dr. Klimo within eight days of talking to Alex [and it would have been sooner had I been able to make the first appointment].
At the same time, her BCCA oncologist was suggesting intravenous chemotherapy.
Indeed, it is now the two year mark and, as predicted, our clock has run out. The cancer clinic tells me, "your oncologist is on holidays right now, so he’ll be in touch when he returns. But his file reflects that, once this medication becomes no longer effective, intravenous chemotherapy is what he’s recommending."
Now, intravenous chemotherapy is really the end of the line. So, this is the second time now [for chemo], and every time you hear it again, you think you can’t get any lower, but you do.
So I weeped. You’re just...it’s not a sob – at least, for me, it wasn’t – it was just an exhausted weeping on the ferry ride over to see Dr. Klimo. I now figured, it’s over.
Margaret meets with Dr. Klimo and discusses her situation. A few days later, Alex and Dr. Klimo have come up with a treatment plan for Margaret that does not involve chemotherapy.
They had a medication that they felt would help me and would postpone the chemotherapy. And, they’d already gotten approval for the funding! This drug is $8000 a month. So I’m like, wow. I’m just ecstatic.
Margaret shared CTOAM’s recommended treatment plan with her BCCA oncologist.
What he said to me was that the research that Alex had arranged is very reliable and probably more accurate. He said that the drug recommendation is reasonable and that, if it were him, he’d get on it sooner rather than later.
He told her that he hadn’t recommended that drug option himself because he hadn’t had the information from the genetic testing and analysis.
The standard practice at BCCA was not to do a detailed analysis of what is driving your cancer. And that when he heard those results, it was easy for him to say, "yes, that drug is the right way to go." And so, I suspect, that if I’d brought the lab work directly to him [and not Klimo], he likely would have supported it from the get-go.
From there, I just carried on with Alex and Dr. Klimo. Another thing that Alex had suggested, besides the genetic testing, was a PET/CT scan.
At that time, [a PET/CT scan] was not funded through the BC Cancer Agency. When I’d broached the idea of scheduling a PET/CT with my BCCA oncologist in Victoria, he said [it wasn’t possible – that it couldn’t determine the hotspots from arthritic inflammation from cancer and, therefore, wasn’t funded]. However, shortly after that, BCCA did start to fund PET/CTs, and they’ve actually funded two of mine since. So, it’s validated, yet again, Alex’s recommendations.
I’m always learning as we go. I’m far more confident and knowledgeable today than I was two years ago when I first hired CTOAM. You learn all the time.
And you mentioned CTOAM was able to get your drugs funded?
Five out of the six drugs recommended by CTOAM were funded. The first drug [which was funded] worked for about eight months. But cancer is a horrible disease! It figures out the treatment and [then learns how to grow in spite of it], so then the drug that used to be effective is no longer effective.
And that’s what Alex does so well: he’s always on top of what’s coming down the pipeline. [As soon as one drug stops working, he has another waiting in the wings to try.] In the last two years, there’s been six different drugs, or combinations of drugs. Five of them were funded.
And where are you at now?
Currently, the drug that I was on became ineffective and I’m now on intravenous chemotherapy. I’m into my fourth month of a six month round. [Margaret has recently been advised that chemo will carry on after six cycles.]
I can say that I had two whole years of delaying chemotherapy, entirely because of CTOAM. And two years down the road, more options are coming down the pike. But four months ago, [when the other drug had stopped working], whatever new drug options there were turned out to be too expensive and not funded. So, we’re back to the drawing board. Alex is currently searching for more funding options and finding out other drug possibilities for me.
[Alex has suggested a few shots of immunotherapy and Dr. Klimo has approved.]
Alex and Dr. Klimo are working on finding other options [including immunotherapy, possibly]. [Recently, another new drug has been identified that Alex is looking into]
So, I don’t know what the future holds. You never do. But I know that [CTOAM is] working on it to find options for me. And you know there’s always hope – that’s just what you hang on to. Maybe there’s another drug out there that’s going to presented at a conference supporting whatever it has to offer, you know? There’s always hope.
If you could go back to when you were first diagnosed, is there any advice that you’d give yourself or anything that you’d choose to do differently?
In the fall of 2015, there [was an article] validating what CTOAM does. [Partners in Discovery, put out by the BC Cancer Foundation, did a cover story on individualized cancer cures.] The article validated everything Alex is doing. In the article, the patient they feature is one of the very few patients who was allowed to participate in the POG program (Personalized Onco-Genomics). There’s a very small portion [of cancer patients who are allowed access to the POG program, and the personalized oncology services that go with that].
[I mention this because], if I were a newly diagnosed person, even today, I likely would not fall into the category of patients [who are allowed in that special program that grants access to genetic testing and personalized research]. And it’s the genetic testing and analysis that made my BC oncologist change his treatment recommendation.
So, what would I tell someone today?
Hire somebody that can help you get this [genetic testing, analysis, and personalized research] done. Because, you know, time’s not really a luxury when you’re diagnosed with cancer. And all you want to do – or, all I wanted to do, was – be able to say to my family [tears up] that I’ve done the best I could…I’ve done the best I could. And, with CTOAM, I know I have.
And CTOAM makes it happen for you.
The BC Cancer Agency is going in that direction – that article [from almost four years ago now] is all about [precision oncology]. But not everybody has the benefit of their POG program at this point in time. So, as a cancer patient, I’ve chosen to hire my own personal research expert working for me and dealing directly with my oncologist.
And if I were a doctor, what better than having someone doing all this legwork for you – bringing you the latest information and supporting it with evidence – and having a back-and-forth dialogue about how to give your patient the most effective [and least invasive] treatment possible? Again, it changed my original oncologist’s view of what he would have done.
So, even though I felt a little apprehensive about hiring CTOAM at first – mainly because it was outside the BC Cancer Agency umbrella – as time goes on, Alex’s approaches have been validated not once, not twice, but three times! And so, today? Total confidence! Wouldn’t doubt at all that I made the right decision.
Is there anything that having cancer has taught you?
I read, at some point during this journey, where someone said that being given a diagnosis of cancer is like being given a present, wrapped in barbed wire. And, you know, doesn’t that say it all...
[tears up] Yeah, you know, that’s exactly what it is. The barbed wire is obvious. The present part is how your family and your friends rally around you – even people who you didn’t think cared as much as they did, rally around you.
I’ve always enjoyed life and embraced life, but I tell you...there are things, like, tyee fishing – I wouldn’t have done that before. I make a point of doing things that I know I wouldn’t have done [prior to the diagnosis]. I’d just put it off for whatever reason. Whereas, now, I just do them. I made amends to some people that would’ve gone…you even forget what it’s all about, that’s how crazy it is. I made amends.
You do look at your life and analyze, you know, okay, you’re coming to the end – like we all will at some point, but now it’s smacking you right in the face – what would you do differently? And So I changed a few things. I’m quicker to tell people I love them. You know, you always did, but you didn’t verbalize as much it, right? I’ll give people extra hugs that I probably wouldn’t have done before.
You’re doing the thriving part.
Yeah, and I actually do want people to look at me and go, “she’s living her life.” And God forbid they are diagnosed, they can see [through my example] that you can carry on and thrive, really. I want to be a positive example.
I hope that if even one person embraces this, it will be easier going forward.
I just want to reiterate that Alex at CTOAM – truly, if there’s anything else out there, over and above what the BC Cancer Agency has to offer, he finds it. And he makes sure that your oncologist is aware of maybe shifting gears a little. As in, in my case, it went from chemotherapy being the only option to delaying that by two whole years. That is priceless. Two years of not having chemotherapy...pretty nice.
Thanks so much to Margaret for sharing her experience.
Expert Advice From Cancer Care Research and Advocacy Specialist, Alex Rolland
You may be wondering, what’s so great about postponing chemo for two years? CTOAM’s oncogenomics expert, with member of our Medical Services Team, weighs in:
Doctors often offer dying patients palliative low dose chemo. Margaret, for example, had been offered palliative xeloda by her public oncologist when we first met her. However, it turns out that this would have been useless for her cancer.
When cancers are at an advanced stage, there is typically a lot of variation in the molecular features of the individual tumour cells. This means that any one drug will only suppress a small population of cells. Typically, these drugs [i.e. palliative low dose chemo] are given to reduce some of the side effects of tumour growth, such as inflammation and blood clots. Additionally, the oncologist usually chooses a drug that the patient initially responded too, with the hopes that it may provide some comfort: in most cases, the drugs are given for a placebo effect and to help the patient feel they are still being treated and cared for.
They are usually drugs [like xeloda] with minimal side effects that may slightly slow the speed of tumour growth – however, more often than not, it’s ineffective (due to the reasons above).
So, the first point is that we were able to postpone the inevitable (i.e. palliative chemo) with Margaret for a couple of years.
Secondly, there are two important related issues. [Read Margaret’s case study to learn about the targeted and immune therapies that CTOAM recommended and helped her access.]
For example, ER positive breast cancers do not respond to PD-1 immunotherapy using pembrolizumab – which has a low Overall Response (OR) rate of approximately 8% or less. However, if you add the chemo agent, Paclitaxel, the patient has a much higher OR rate (34% vs 13%) compared to standard chemo alone.
We’re currently using this strategy with Margaret. To explain how this works in more detail:
Specifically, tumours avoid detection from the immune system via the CTLA4, IDO, and PD-1 pathways. Currently, the PD-1 pathway is of great interest because there have been remarkable responses from drugs that inhibit this pathway.
PD-1 (or, programmed death one) is a protein that cells use to protect themselves, since it disables certain arms of the immune system, such as T-cells. Normal cells express PD-1 in order to tell the T-Cells that they are part of the normal body system. Tumour cells upregulate PD-1 and create a bubble of it around them – so when a T-cells comes to investigate it, they’re tricked into thinking the tumour is part of the body’s normal functioning. PD-1 inhibitors, such as Pembrolizumab, interfere with the PD-1 signalling pathway, allowing the tumours to be recognized by the immune system.
Studies show that the higher the level of PD-1, the better the response is with these drugs [PD-1 inhibitors]. The issue is that tumours only need to use this process transiently in order to permanently disable the immune response. In other words, a specific tumour will only use the PD-1 bubble once – and, at different times – in disease progression.
However, we now know that certain chemo drugs increase PD-1 signalling immediately after they leave the body. Therefore, combining them with PD-1 inhibitors can result in a much better response rate to these drugs, because it tricks the tumours into producing a high amount of PD-1. Of course, there are other processes involved; this is a simplistic, theoretical explanation.
Margaret is now on both immunotherapy and chemo for these reasons.
If you’ve received a cancer diagnosis, please email or call us today to learn how to access the most advanced tests and treatments for your form of cancer. Register for a Precision Second Opinion to discover how we can help you to reduce stress and dramatically increase treatment success.
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