Isla

audio
Age at interview
47

Isla (47 years old) is married and has two teenage children. She has a PhD degree.

Isla received her diagnosis in 2013. Isla had seen her doctor after noticing a lump and was advised to have an ultrasound. Isla gave it a low priority as there were more pressing health issues in the family. But, about 8 months later Isla noticed a distinct difference in her breast and decided to do the follow up. Isla could tell that the technician wasn’t very happy and was a bit more worried when she was asked to have a mammogram as well before leaving. Isla was contacted by her doctor the next day and he urged her to come and see him as soon as possible. Isla had planned to leave that day with her daughter for a family weekend but decided to see him on the way out of town, even though she initially told him that she didn’t have time. The doctor told her that it was likely cancer and referred her for immediate treatment. The referral from her doctor for treatment was within the private health care system. This meant that Isla had to pay for the surgery herself and then because her medical oncologist also joined the private system midway through her treatment, she had to start paying him as well. Isla said “When I began with him my RAMQ card worked and when I now go to him my VISA card works”. Even though she jokes about the situation Isla also expressed great concern about the unequal access to care as well as the vulnerability issues when an oncologist joins a private system midway the patient’s treatment. Nonetheless, the private care was fast and good and this was most important to Isla who wanted to be treated as fast as possible. Isla found the treatments very manageable; she didn’t have too many side effects and was able to continue certain activities. Isla did take some sick leave during the treatment but has now returned to work. Isla was offered a new position just before she was diagnosed but she decided to remain in her former position where she has more flexibility to be able manage her follow-up care.

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

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Again very manageable, sort of like temperature changes, but very manageable. So I wouldn’t fear the tamoxifen, as drugs go, it’s a tried and true, it’s cheap and it seems to do the job. It is a drug that has definitively been shown to stop cancer occurrence and we don’t have very many of those on the market.  It’s a goody. You know, I’ve never taken a pill every day in my life so that kind of bugged me. I find that intrusive but I have to get off that.

Interviewer: For how long are you going to take the hormones?

The protocol now is 5 years but there’s been evidence that 10 years as well may be the way to go, so I think you start on the 5 and then you see how you’re doing. It is effective for sure for hormone sensitive tumours, so you do it, you do it for sure. And the side-effects for most people, I think, are quite, quite minimal and for me, really, they’re almost non-significant.

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Well Quebec is an interesting case study, what can I say? There is a lot of patient experiences now, you’ll find in Quebec where people have to pay out-of-pocket for some of their stuff because there are 250 doctors in Quebec that are outside of RAMQ (Régie de l'assurance maladie du Québec) and many of them are breast cancer surgeons or medical oncologists. My medical oncologist joined the private system midway through my treatment so when I began with him my RAMQ card worked and now when I go to him my VISA card works. 

You know and I’m not it’s not a political statement I’m making about it it’s just as a patient it’s really difficult to have these things change on you especially mid-treatment and when you get used to an oncologist, you don’t want to give up that expertise and so patients are quite vulnerable and these doctors are allowed to do this. I think they actually think that they can provide better service to a smaller patient group when they’re in the for-profit system so I understand it’s not a simple answer, it’s just that it was surprising to me that I had to pay for my care.

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What else, I would say that sometimes the protocol that’s in place, I’ll give you an example. So women who take Herceptin they’re supposed to get MUGA scans* (Multi Gated Acquisition Scan) every 3 months while they’re on it to monitor the ejection fraction from the left ventricle of the heart. Well a MUGA scan is an injected dye, it’s a nuclear medicine test, so for someone who gets a blood test all the time and who gets intravenous chemotherapy signing up for a MUGA scan after you’ve had a bone scan too is not something that you want to do. I decided I wanted to have echocardiogram, which is a non-invasive ultrasound of the heart. So I got scolded by a cardiologist because the error bar around the ejection fraction that’s determined from an echocardiogram is probably bigger, is bigger than the change that they’re trying to detect. But I accept that as okay, I know it’s not precise enough but I don’t want another test and I don’t want another needle and I need for you to respect that, right. I understand that I’ve given up precision but what I’ve gained is I don’t have to have nuclear dye in my veins every 3 months, right.

So they have to kind of understand where people are coming from on that even though I know the precision isn’t there, right. So it’s not a good serial follow-up, I know. I made that decision thank you.
No he was upset with me and he continued to say “You shouldn’t be doing this” I’m like “I know you’re not going to see a 2% change you can only see a 5% change I’m willing to accept that, right.” Because the biggest changes are coming usually in elderly women, usually in people with pre-existing conditions. I don’t have any of those so the so-called risk to me of the test is bigger than the lack of precision by the choice that I made in my view. And he, that’s my viewpoint on it and it’s not an unformed viewpoint, it is a lay viewpoint but it’s not an uninformed viewpoint and it is a valid viewpoint.

* MUGA scan: Scan that creates video imagery of the hearts ventricles to check for abnormalities and to ensure that they are pumping blood properly.

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The surgery’s a day surgery, even though they, in my case they took quite a bit of tissue, but it was done in one day. I was able to go home. I went out for lunch with my sister the next day although I don’t think you should do that. I think that was a bad decision because I didn’t feel well after that. It was fine if we look at all the research, the radical mastectomy approach doesn’t have better outcomes, being able to keep your breast is kind of a nice, nice thing especially if your surgeon’s really good in terms of not mutilating you I guess, for lack of a better word. It’s fairly convincing evidence that the partial or partial’s just another term for lumpectomy, one does not imply more tissue than the other, it’s just they’re synonymous. So those approaches that are breast conserving, let’s say, have very good outcomes. There’s really no need for excess surgery, although it’s kind of clouded now, with all the Angelina Jolie and stuff, where she’s clearly in a different category with having a BRCA1 gene*(Breast cancer 1 gene). So, I can see why she did what she did, but I think a lot of women have jumped to surgery thinking it’s, more radical surgeries, thinking that they’re a better option, when they’re not, when often times it’s not the case. Because you feel at the time, I understand the feeling, just take everything away so that this won’t come back, but that’s not exactly how it works. 

There was a, well, the decision was to get the tumour out right away and then see later if there was going to be more surgeries. But at that point if you have clean margins and the surgery was successful and you can manage how it looks afterwards then to go on with more surgery, you really have to weigh that out, right. Surgery and reconstruction, the reconstructive surgeries, from my understanding, from people who have had them, they’re very… it’s quite invasive. It has to be weighed pretty carefully.

Oh, if there’s a recurrence, I think I’ll just sort of listen to multiple opinions about it but I think (…) I think the one advantage to the double mastectomy approach, is kind of eliminating mammograms and that kind of thing in the future. But you still need to be followed up because you can still get a recurrence on a scar. You can, breast cancer’s sneaky, and that’s the theme I’m coming back to. You’re never sure fire approach, right. If there’s a recurrence, I would take that decision at the time given the full knowledge of the situation.

Interviewer: How do you feel about the results of the partial mastectomy?

Pretty good, really good. A good surgeon makes a big difference I think. I would tell people to really scout out their surgeon before even a breast conserving surgery because the placement of the scar can be camouflaged and it’s a good surgeon can do some remarkable things and it’s quite amazing.

*BRCA1 gene: Mutated gene that can increase the carriers chances of having breast cancer.

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I don’t think the medical community has a full understanding of it. To be truthful, if you start to look at what we know about tumour markers and prognoses, and if you look at tumours that have high hormone receptors and express the HER2 *(Human Epidermal Growth Factor Receptor-2) proteins and also express progesterone, then I don’t think we know that when you start slicing and dicing your tumour so that there aren’t millions of you. But now there’s thousands of you worldwide, then you don’t have the current survival curve anymore, because you can’t get it for that type of tumour. You don’t really know as much anymore about that particular type of tumour. So as we get to more personalized medicine in breast cancer and more knowledge about pathology and tumour pathology, those survival curves are going to have confidence bounds on them, like this wide, because there’s not enough people in each of the categories anymore. So how do I answer that? By saying that some people with my type of disease do fabulously well and never have a recurrence, and some of them don’t, and that’s all we know about it. Breast cancer is really sneaky. Sometimes the most innocent looking tumours tend to be difficult later on and some of the tumours that present with sort of really horrible characteristics and that look like bullies, you stand up to those bullies and they go away. And when you ask an oncologist this question, they all tell you, “Hmm I don’t think we have a survival curve for you,” because there’s so much misclassification. So if you look at a survival curve for hormone positive tumour, but your tumour also has another characteristic. Well which bin should you be in? The hormone positive one or the HER2 positive one, or the combined HER2 positive one? But what if you have the PR positive* (Progesterone-Receptor-Positive)? Well then there’s no bin for you. So you’re misclassified all the time.

  • *HER2: A gene present in cells that, in some breast cancer cases has a mutation. This mutation causes the HER2 gene to be overproduced in breast cells, causing cells to be more aggressive. However treatments that target HER2 are very effective."
  • PR Positive: The cancer cells’ growth may be promoted by signals from the progesterone hormone.

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My (working place) is a very nice place to get sick because people are very understanding and very smart about what they say so it’s lovely. So the impact on work was… I couldn’t keep the teaching up during that time and they were very understanding. I had a 6 month leave available and I took it and I came back after that. I had taken on a larger administrative job 2 weeks before my diagnosis and just because I’m still in treatment and there’s some side-effects, I’m not headed back to that position in January as previously planned, so it has impacted my career for sure. A lot of people with a chronic illness will say that their career got somewhat derailed by that. I don’t think it’s a long-term derailment but it’s certainly a short-term one.

That’s right, but right now, with still in active treatment, it’s inadvisable mostly because, I’m sure people listening to this will understand, cancer is a busy job. You have a lot of appointments. It’s very hard for you to be relied upon in a workplace setting if there’s less flexibility. I need the flexibility now to say “Well no I can’t meet tomorrow because I’m in treatment.” or “I’m having a follow-up exam.” and I don’t want everyone to continuously have to work around me. I kind of pre-empted that by keeping the job with a lot more flexibility so that it’s okay to be at work at the hospital with my set-up and I can still get things done but I don’t need to be in a face-to-face meeting.

It’s a huge issue for women. I think some of the research that shows women don’t come back to the same level of job or they lose their job or feel that they can’t continue with it. I can totally see why. I was really lucky I have a flexible employer and I had access to paid leave and that is a tremendous benefit. I’m lucky to have a job that has all of those things, but I don’t think that’s true for all women. I’m lucky that I have a decent job and my spouse has a decent job and he didn’t lose a lot of time during that. But absolutely, for women, the job loss or keeping their jobs during it I think is very, very difficult and I’m sure it derails careers and it derails earning potential for sure, like other illnesses.

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I love my job but I needed to be away from it. I’ll be very honest about that, but I was also happy when it was coming time to come back.

You’re too occupied with your kids and your illness and the appointments. Just taking away the stress of having to juggle everything was really valuable for me during that time period. I’m grateful for paid leave, which we pay into as employees. And which your employer pays into too and which we take when we get sick but that’s what it’s for, it’s an insurance.

This was all very manageable, so for anyone else facing it, it is manageable. I kept teaching until Christmas and at that point, I stopped teaching because it was a little bit harder, plus, I had kids. So as I said to my employer,” I could do kids and cancer or work and cancer but I couldn’t do kids, work and cancer.” I took a leave of absence during the heavy lifting part of chemo but I was able to maintain a fairly normal life. I was cross-country skiing. I don’t say this like a badge of honour because not everyone’s going to feel like doing that. But, for me, carrying on a normal life, trying to get away for weekends, keeping up with cross-country in particular which my husband and I really enjoy, remaining active trying to eat well, was very important to me and was all doable during that time.