Laurie

Laurie
Age at interview
56

Laurie works as a professor of computer science at a university. She is married and has one grown child.

Laurie received her diagnosis in 2014. Her physician had noticed something unusual, not a lump, in her breast during an annual exam. She referred Laurie for an ultrasound. It turned out that Laurie first needed to do a mammogram which was then followed with further testing (the ultrasound and biopsy). Laurie was told that she had breast cancer and a treatment plan was proposed which included breast conserving surgery, chemotherapy, radiation and hormone therapy. From this point onwards, Laurie adopted a rather unique approach to her care – which she refers to as a ‘patient researcher’. She worked hard to develop a full understanding of her diagnosis and used this knowledge to discuss her treatment plan with the medical team, proposing changes according to research evidence and her personal preferences. The first decision she had to make was whether or not she wanted breast conserving surgery. She searched the scientific literature regarding options and came across an innovative technique called a ‘Goldilocks mastectomy’. With this approach, healthy remaining skin flaps are used to create smaller breasts during a single surgery (in her blog you can find more information about this procedure: http://flatchestedwarriors.weebly.com/). Laurie prepared a power point presentation for her next appointment with the surgeon. She successfully convinced him to follow this procedure for the first time in his life! Then, Laurie and her oncologist decided that she would not undergo chemotherapy. This decision was also made based on the scientific information she had gathered. She also questioned the radiation plan and continued to gather scientific proof to optimize her treatment which she sent by e-mail to the radiation oncologist before her next appointment. He sent her back some more information and reserved more time for her appointment so that they could go over all of the information. Again, she went with a power point presentation to this appointment – one that she had found on the internet from another researcher. Together they decided to compromise and radiate only the upper part of her chest, a smaller area than originally suggested, and they also agreed to reduce the period of radiation from five weeks to three weeks but with a longer radiation time. These were not the only things that Laurie challenged and successfully adapted or  changed over the course of her treatment: she  questioned things such as why she wasn’t supposed to  swim during radiation (she brought the team new markers), why you can’t receive an image of the radiated parts of your body (she requested and received them), why you need to wear a hospital gown for a mammogram (she was able to keep a ‘t shirt on instead ) and why it is so difficult to get copies of your own test results. Laurie thinks it is really important that patients are included as partners in treatment decisions. She is convinced that patients from all kinds of different backgrounds, possibly with the help of a navigation nurse, can learn and participate more in treatment decisions together with the health care team.

Time since diagnosis
0 -1 year
Phase of treatment
Remission

Videoclips

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And currently in Quebec if you have no nodes positive they will allow you to get the Oncotype DX* test which tests your genetic components in your tumour. Then based on your Oncotype results, you can see whether it’s beneficial or not to do the chemotherapy. But as soon as you have a node positive, you’re not automatically entitled to that, but I found a doctor who was willing to order it for me anyway. And then when I got the results back, it turns out that my Oncotype score was 18 which is right at the boundary of low risk and intermediate risk. So being an optimist, I would say it’s the top of low risk. And actually there were two lines and they intersected at exactly my score so one line was Tamoxifen + chemotherapy; the other line was just Tamoxifen and I was bang on the intersection. 


So being a scientist that told me the best information that I have is that there’s no obvious benefit for chemotherapy, so I won’t do it. Which is not necessarily what the oncologists think. But they accepted this, so in fact I made a second PowerPoint presentation for the oncologist. With my graphs and the other parts from my pathology report explaining why I thought the chemotherapy was not necessary. And he didn’t completely agree, but he didn’t completely disagree either. So we didn’t do chemotherapy, and we just started Tamoxifen straightaway which in my case, since I have an ER positive tumour, it’s a very beneficial thing to do.

* Oncotype DX: Diagnostic test that analyzes how gene groups could have an effect on the cancer’s reaction to treatment.

 

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I’m taking tamoxifen. Actually a lot of people stop taking tamoxifen because of the side-effects. And this, I don’t understand, because everyone’s perfectly happy to do chemo, like they’re told do chemo and they say, “Okay, I’ll do chemo,” and they’re sick like dogs for 6 months but they’ll do that but then people take tamoxifen, they get a few side-effects, and they stop taking it. Whereas actually the effect of the tamoxifen is equally important so why is that?

Interviewer: Maybe it’s also the time, like you have to take it for 5 years?

I know, but the amount of distress in that 5 years can’t be equivalent to the amount of distress of doing chemo. So I know I have to take it because that’s one of the most beneficial things.

 

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About just over a year ago when I went for my annual exam with my GP (General Practitioner) and she did the breast exam. First, she felt right here on this breast and then she went “Hmm”, and then she felt on this side and she went “Hmm”, and then she came back to this side. And whenever they go back and feel again that’s a bad sign. She said “I don’t know. I think I feel something here.” Like it was right here.  “I don’t know for sure, like you can’t really feel a lump, but it just feels not quite right. So I think you should go and have an ultrasound.”

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I think most of the healthcare are good people—I mean obviously they’re into healthcare and they’re doing their job because they care about helping people, right and they’re doing their best in the current system to do that. But I think it’s time to rethink the system a little bit and to give some of the power back to the patient and don’t underestimate what the patient can do and understand. So people will someone say, “Okay Laurie, I see that you’re getting the information and you made good use of it, and you understand it but most of my patients wouldn’t.” I don’t believe that actually. I think that there’s quite a bit of information that could be given to the patient, especially if it’s personalized to their situation that would be very beneficial to them. And even if they didn’t understand it on the spot during the appointment, being able to take it home, show it to their family members, and think about it for a while. I think just having their own personal information, pictures of their tumour, pictures of their radiation, their latest blood test results, a graph showing their weight, because they’re really concerned if you have cancer if your weight’s going down.

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So the normal course of events would be that then I’d go for 6 months of chemotherapy and because I had one node positive they wanted to also do radiation, both on the breast area and on the supraclavicular area here. But I didn’t like the sound of that either and we’re really starting to get into the era of personalized medicine where they can look more at the genetic makeup of your tumour to decide whether chemotherapy is beneficial or not. And currently in Quebec, if you have no nodes positive, they will allow you to get the Oncotype DX* test which tests your genetic components in your tumour and then based on your Oncotype results you can see whether it’s beneficial or not to do the chemotherapy. But as soon as you have a node positive you’re not automatically entitled to that but I found a doctor who was willing to order it for me anyway. And then when I got the results back, it turns out that my Oncotype score was 18, which is right at the boundary of low risk and intermediate risk, so being an optimist I would say it’s at the top of low risk . And actually there were twolines and they intersected at exactly my score so one line was Tamoxifen + chemotherapy; the other line was just Tamoxifen and I was bang on the intersection.

* Oncotype DX: Diagnostic test that analyzes how gene groups could have an effect on the cancer’s reaction to treatment.

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And then I thought well that’s not great because where I live in (city in QC) the swimming pool is more or less in my back yard and in the summer I always go for a swim before going to sleep because then I sleep better because I’m cooled off. And even more so if they stick you on Tamoxifen, which makes you have hot flashes and they’re radiating you so you’re hot, so swimming feels even better. So I thought hmm how am I going to swim when they told me not to swim? So then I looked into it a bit more and I actually found on the web, not scientific articles, but experience from other breast cancer people who had written to some of the discussion forums on one of the official breast cancer things. And several of them said, “Yeah, yeah I swam fine and I just made sure that I put a sort of a thick lotion, sort of a more oily one, that would protect the skin while I swam and then afterwards I made sure I rinsed it really well and then put my normal stuff back on and it was fine.” And I thought, “Okay that sounds reasonable so let’s try that,” and then I was worried, “Okay but what about this washing off of the marks business, because they’re not going to be happy.” And then I thought, “Well you know those tri-athletes they start with swimming and they have numbers written on them and the numbers are still there at the end of their triathlon. So maybe I should find out what kind of markers they use.” So I looked up on the Internet and sure enough there are special sports markers that are for this, so I ordered some and I took them to the radiation therapist and said, “Let’s use these markers instead of your markers and we’ll see if they don’t wash off,” and they worked pretty well. 

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And then we had to decide about the radiation. They said that I should have radiation both in the breast area and up here but I wasn’t very keen about this and I wasn’t very keen about going for 5 weeks every day. So I started to do some research about the need or not need for radiation in the case of mastectomy, because a lot of the current research is on breast conserving surgery, where they always do radiation. And I wrote to some doctors in the United States and I wrote to the surgeon who invented my procedure, and none of them seemed to think that I should have radiation and my surgeon didn’t think I needed radiation. So then I sent the papers and my summary to the radiation oncologist saying, “We have an appointment coming up but this is what I think and I thought maybe you should see me, about my surgery and stuff before.” And he wrote back to me, he said, “Yeah,that makes sense but there are these two recent studies,” and he gave me the names of the studies, “That would indicate that doing radiation even for mastectomy patients is worthwhile so why don’t you look into these and then we’ll chat when we meet.”  

So I found yet a third PowerPoint presentation, not mine this time but one made by a radiation oncologist in the United Kingdom that actually walked through these two studies and came up with her summary of what the situation was and actually her summary would also say I shouldn’t have radiation. But we talked for over an hour and we went through every study and we looked at whether it applied to my situation or not and finally I said, “Well could we come to a compromise and only do the upper part and just leave the, what I call the baby bears because it’s the Goldilocks mastectomy, alone?” Because no one knew what radiation would do to these guys, and really, if you have radiation on the nodes,  if there’s anything that’s reached these nodes the idea is to zap it. And he said, “Well since you’ve already gone on this strange path so far why not we can, we can do something different for you for the radiation.” And then I said, “Well I’ve heard that sometimes you can do this in 3 weeks instead of 5 weeks, where they give you slightly more radiation per treatment.” He said, “Yeah, yeah we could do it in 3 weeks.” So that’s what we ended up doing, 3 weeks just on here and you can sort of see, it’s still a little bit red but not too much more red than this side. So it’s basically from here up to here and so far so good. I mean it’s been about almost a year now since my surgery and nothing’s come back so far. 

 

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Actually I went back and I looked at my Facebook page. All the pictures I’d put up of me doing stuff and in no picture did my breasts figure as an important part of what I was doing. So I thought well, why not just remove the breasts because that seems like the safest thing to do. Then if there’s anything evil in the left breast it’s gone and there won’t be as much follow-up and worry about what happens in the future. But I knew the surgeon wasn’t going to be very keen about this idea. So then, I also thought, when they do a mastectomy, normally they make an incision just straight across, so you just have a straight line and a completely flat chest. And I’m thinking, why is that, isn’t there some better way of doing that? If this was for a guy and it was some important part of the guy’s anatomy, would they just do that, would they just make a straight line across or would they sort of try and figure out how to leave something that looks a little more natural than that.

And then I looked up some websites of transsexual people who are actually having… changing from female to male. They actually, they have thought very hard about what their, what they want their chest to look like after having the breast tissue removed. And I thought, so people have thought about this but not the cancer surgeons. And then I started looking on the Internet for information and I found some pictures of what the breast would look like after a mastectomy. I actually found one woman who had made her own blog, that actually showed her scars, because she said it was very hard to find information and she wanted to be able to show her husband and talk about what it would look like. And so since she couldn’t find it, she just made one herself and it wasn’t so bad. So then, I’m thinking well okay. I thought, there must be something better and I looked in the (name university) library online and found the most recent textbook on breast surgery and at the very end of the chapter on mastectomy there was a short section on this new thing called the Goldiloks mastectomy which was exactly what I was looking for.

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And then I thought well okay there must be something better and I looked in the (name university) library online and found the most recent textbook on breast surgery. At the very end of the chapter on mastectomy there was a short section on this new thing called the Goldiloks mastectomy, which was exactly what I was looking for. So basically, you take out the breast tissue and then you form sort of a small mound here, very much like a breast reduction but there’s no breast tissue up there. It’s just a skin flap that’s been shoved in there to make a small mound, and you have a scar that’s like this underneath. So it feels almost like you just have a little pressure there from a bra line or something.

And I thought that looks cool. So and then how was I going to find a surgeon to do this? How was I going to get my surgeon to do this? So I contacted the surgeon who had invented the procedure and asked her some questions and she said “You can have your surgeon phone me any time.” So I got her phone number, I printed out the paper about the procedure and I made a PowerPoint presentation about why I wanted to have a mastectomy, and why this was a good procedure. And I tried this presentation out on my family and then my GP (general practitioner) and my GP’s going like Laurie no one’s ever made me a PowerPoint presentation before but this Goldiloks thing looks pretty interesting. Why don’t you ask the surgeon if he’ll do that? So go show him your PowerPoint.

So I made an appointment and I went to the surgeon. I sat there with my laptop and we looked at my PowerPoint and I said “Let’s do this.” And he was well, he is really busy, right! And he’s busy, busy, busy and then he has this crazy patient come in saying do something completely different. And he said “Well no you’re going to need a plastic surgeon to do that.” And I said “No, it says in this paper that a general surgeon can do this procedure and you’re a good general surgeon, so I’m sure you can do it.” So he said “Okay I’ll take the paper and I’ll read it and I’ll talk to my colleagues at the hospital, the plastic surgeons for advice.” Then, he decided yes he would do it and he actually did contact the doctor who had invented the procedure. When it came for the day of the surgery, he basically came in with what I think was an e-mail from her with the directions about how to draw the lines. Because, before you go for the surgery, they have to draw where they’re going to make the incisions. So he was sort of reading and measuring with his ruler and his protractor, and so, all the lines got drawn and then he did the surgery. He had to actually learn one new technique in order to be able to do it but he did that.

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The side-effects for radiation, they talk a lot about the skin side-effect and that’s sort of a very temporary thing. Even though it’s still a little bit red, it doesn’t hurt or anything. But the radiation’s going all the way through your body, actually everything in there gets a little bit tender or scar tissue. And that’s uncomfortable, if you have it here or if you have it here it can affect where the lymph is draining. Even now, I still, I’m stiff here even though I’m doing tons of physio.

And these side-effects aren’t immediate. They can come within the first 3 years after radiation. So they don’t really tell, they tell you about the short term one, right which is the red skin and what to do with that but they don’t really prepare you for the other things that are going on in there. And I think they should be giving you a more... everyone should be getting physio to keep it mobile.