Melissa

Melissa
Age at interview
35

Melissa (35 years old) is married and works in a governmental agency and has a son who is twelve years old.

Melissa was diagnosed with triple negative breast cancer in 2013. Melissa first felt the lump a couple of months before when she was reaching up high to put the dishes away. Breast cancer seems to run in Melissa’s family as her mother, 2 aunts and her cousin have all been diagnosed with breast cancer. This was one of the reasons why Melissa decided to inform a friend about her lump who is a radiologist and not her direct family as she didn’t want to concern them. This friend was by her side while she went through the initial testing. Melissa told her husband after she had an MRI and decided to tell her parents when they came over for a visit; she felt that she was able to support her parents through this period! It wasn’t easy for Melissa to decide whether she wanted chemotherapy or not.  Her two aunts had died of their cancer following their chemotherapy whereas her mother did not have chemotherapy and yet was still healthy. In the end, Melissa did choose to undergo chemotherapy because she decided she would rather do the treatment now while she was still young and strong rather than at a later stage. Melissa’s family doctor called her personally to tell her to make sure to find out what chemotherapy means with regards to her fertility. Melissa can’t recall at all if the cancer team brought it up to her as well even though it is such an important aspect in her life. Visualisation, Reiki and some other complementary treatments have helped Melissa cope with the illness. At the same time she believes strongly in the positive contribution of the use of humour and having an optimistic attitude.

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

Videoclips

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I did a phone consultation with a naturopath who had been recommended to me and I had 15 minutes with her by phone and I just kind of needed a different... I just wanted a different perspective. And so, what she had said was she had had really good results with respect to recurrence with certain cancer patients and I asked her about any cancer patients with my particular type of cancer and she said that every one of her patients that had that kind of cancer did the naturopathic therapies or those complementary therapies with her in addition. There weren’t alternative they were actual complementary therapy so in addition to chemotherapy, they did those. So, she also had the opinion that it was a bit tricky and that it was probably a good idea to do the chemotherapy in addition with some of the naturopathic approaches.

But for other complementary therapies, I did Reiki, massage therapy, I did psychotherapy and I still see a psychologist. I think it’s really important to be able to have a sounding board and somebody who’s an independent third party who’s especially familiar with these types of diseases and all of the different kind of facets. Whether it’s the financial implications for some people, whether it’s the familial implications, or anything else it’s a really good chance to be able to kind of get it out and listen to somebody. Because sometimes that can make a huge difference in not only your treatment but in your chances of recurrence moving forward.

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Initially when I had gone for my follow-up, with my surgeon, she had mentioned, you know, the fact that I would likely have to do chemotherapy  based on the histology of the sample. My mom had not done chemotherapy for her first round when she had breast cancer. So it was very... and she was very healthy at the time and had no concerns about any recurrence. So it was a very difficult decision for me to decide whether or not to go that route despite all the recommendations that the physicians were giving to me.
And you know, they kind of give you, they kind of give you the statistic and you can kind of understand what it means but there’s always these caveats that underlie everything. So after speaking with... I did a lot of research on it, and after speaking with a naturopath, some other friends and other women through a peer network, I was able to come to the conclusion that probably the best option for me was to pursue the recommended course of action by the physicians. So I began chemotherapy in April of last year.

Interviewer: So and did you feel you had a clear idea of your treatment plan when you first started or how did you follow?

No, I didn’t because I wasn’t really sure exactly how everything was going to move forward. At my first oncology appointment it was almost like the decision was made for me. Like the oncologist came in and was talking with me and explaining that this is the regime, this is how it’s done and moving forward. She was happy to answer my questions but when I had a bit of reluctance about talking about doing chemo, she was kind of like "Oh! Well what are you worried about?" And it wasn’t a very supportive approach. I explained to her that I was worried that I had these other family members who did this and it didn’t work for them.  I was concerned that I was going to be doing this kind of for nothing. I was going to be putting my body through this crazy toxic environment for months and then burning my skin for months to end up with a similar result and that was what I was concerned about. When I explained it to her in that way, she was a bit more understanding as to where I was coming from. But yeah as physicians do, they kind of revert back to numbers sometimes, and so she explained to me what the percent chance of recurrence with chemo was and what the percent chance of recurrence without chemo was.

So from that appointment I took away that information and did a bit more research and chatted with a few more people. I was able to come to the conclusion on my own. But I’d have to say I wasn’t afraid to, I wasn’t afraid to tell somebody, to tell a physician that that wasn’t my decision. So I think that it was really important that I just kept up the fact that it was my treatment and I just stayed with that approach. Like yes, I’m their patient, but it’s my treatment and it’s my body. So I just kind of kept that in my back pocket and they had... I went to the appointment and they already had me scheduled for my first chemo treatment. They had me scheduled for all of these different things and I was just... I need some breathing, I need to breathe for a minute. In the course of that period of time I was able to do the research that came to, that helped me come to my conclusion. I just kind of said " I need some time to think about it this is a bit, it’s coming in a bit fast and I want to, I need to feel comfortable with my decision because it’s just going to make it harder to endure I think if I'm not comfortable."

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One of the other things was I did a lot of visualization and one of the things that I did with visualization was when I had the tumour removed. I actually had visualized that that was all the cancer that was in my body and that was what was coming out. After my surgery, I actually considered myself to be cancer-free. I just really focused on the fact that chemotherapy was a preventative measure and that this was really going to... any stragglers that were kind of left around they were going to be disintegrated. That was kind of my approach and that was, I think one of the ways that made dealing with chemo a little bit easier. I think it definitely was up there with how I dealt with it.

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I’m a mom. I have a full-time job. I have a spouse who sometimes doesn’t understand things and there’s a lot of other women or other caregivers who are in similar situations and I think that it’s really important that we all understand where everybody’s coming from. Especially because there is a tendency for women to want to do it all, be it all and there’s a... I think it’s a picture. There’s a picture of a woman with chemotherapy, who’s a cancer patient and she’s carrying the groceries and carrying a baby and you can see her kind of spiky hair. It’s a cartoon stick figure type thing, and she’s running after the dog and then it says ‘mom with breast cancer.’ And then the other picture’s ‘dad with a cold’ and it’s in bed. I think that the stigma for women to continue to have to do it all is still there and I think that it’s really important that we recognize that we don’t have to. I did still work but that was by choice that was a, that wasn’t an "I need to do everything" it was a normalcy thing for me. It was trying to stay on target for that. But I did want to share because I think it’s important that people can have different… have different perspective on the disease and how it impacted them.

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I didn’t feel there was a plan, I just felt kind of left to my own devices on how to move forward. What's the next steps were going to be. I felt that for 4 to 6 months, I had this handholding and I had these schedules. I had everything kind of mapped out for me, with respect to my treatment, and then they just kind of release you into the wilds. It’s almost like, I don’t know, I guess I would equate it to when you leave the hospital with your child for the first time. You’re comforted and you have a nursing staff and you have physicians by you, for that period of time that you’re in the hospital and all of a sudden, there you go... just go.

Not that there weren’t resources and things like that available but I just felt there wasn’t a concrete plan. It wasn’t spelled out for me, okay every 6 months you’re going to have a check-up for this. Every year you’re going to check up for this. This is how we recommend moving forward with health, exercise and other wellness. There wasn’t any kind of structure and I know that it’s very individual for people but just to have something kind of... to work with somebody before you’re kind of discharged. Not from the Cancer Clinic as a whole, but just from when you’re discharged from that constant care system.

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At my initial appointment right after the mammogram, when I was told that it was likely cancer I was by myself, but I knew the radiologist doing the reading and you know we had a good little cry in her office. And then as we moved into the respective testing procedures, an MRI*(Magnetic Resonance Imaging) you’re often… you have a bit of a bandage or you have markings or whatever, so I felt like that was going to be really hard to conceal from my partner. So I decided that I would let him know but that was after the MRI. I had done the MRI. I wasn’t supposed to drive after the MRI so my sister came with me and she was really great through the whole experience. She was really, really positive. But I think one of the hardest things was telling my family because of our family history and so telling my mom and dad. In our family we often, not that we make light of subjects, but we often try and make them comedic. And so my sister joked that she was going to do a cake and it was going to be in the shape of breasts and there was going to be like a little cupcake in one of them and that’s how we were going to tell my parents, through this cupcake lump in a breast cake. So I didn’t really think that that was the best approach but we did wind up telling them. We shared with them, while they, I didn’t want to tell them over the phone, I didn’t want to tell them… even through like Skype or something like that because they live about 8 hours away.

So I was trying to find the best way and so they wound up coming up for a visit. My sister was getting married and so my mom and dad came up to help with some of the planning during the time, around the time of my surgery. They were here and it was great to have them here and so we told them, of course, there was definitely some emotions going on but I think just the fact that I had already kind of been through…I had already kind of been through that myself, I was able to provide them with a support which is normally, it’s not necessarily the way that things unfold. But I felt comfortable telling them and explaining to them all the process and how everything was going to move forward.

It got to the point where you know even my friends and I, they have those e-cards those like (names Brand) those funny cards. We wanted to develop our own chemotherapy versions of ones like “Who needs Weight Watchers? Do chemo!” You know like these kinds of things, just joking around and the top 10 reasons why I have no hair “I stuck my finger in a socket, I pulled a Britney.” That was a really common one; I did a Britney Spears. I just found that it made things a little bit easier to tolerate and I just think that it also made it a little bit more comfortable. It made it a little bit easier to deal with especially when you know I was telling people for the first time about my diagnosis it helped too.

Interviewer: How did it help you?

Well like you know if people would ask about people would have asked about, my short hair like, because I had long hair for so long and people haven’t seen me for a while then, then they ask and so I’m just like “oh you know I had a moment or you know bad break-up.” Just kind of to break the ice and then I say “Actually I was sick last year and I had chemotherapy.” So it, it winds up being an icebreaker into something a little bit more serious than, yeah.

*MRI: Imaging test that creates a 3-dimensional picture of the body’s internal structures using magnetic force and radio frequencies.

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I think giving patients a choice goes a long way. So even if it’s not, not necessarily a yes or no choice but in certain circumstances that’s not always the case. Sometimes with children, they just need to know that they can make a decision and you don’t ask them if they want toast with peanut butter you say “do you want toast with peanut butter or do you want toast with jam?” and giving them... you’re still going to have toast but which way would you kind of like to have it? And I think that patients feel a bit more involved in their treatment if they’re given those kind of choices especially when it comes to something like this.

I mean, I’m not sure that we’re there yet but, I think that there’s definitely, there’s definitely some little strides that physicians can make with respect and to providing patients with options and choices.

Well like the port versus the pick. Having something hanging from your arm is a little bit uncomfortable and it’s, it needs to be kept sanitary and all of these things whereas maybe the port is a bit more invasive but it gives the client or the patient a little bit more freedom in how they’re accessed or how they can maintain their lifestyle. Maybe for some people having a pick isn’t conducive maybe they swim and they can’t get it wet and all those kinds of things. So I think just taking into consideration the differences in patients, sometimes is instead of having one kind of linear approach, to be able to give patients choices within options where it’s possible.

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So like I said, my mom, because of the success that my mom had had, she was almost 10 years cancer free before she was diagnosed with a recurrence. I felt like, that maybe, it was a bit excessive to do that. And so, in my discussions with my physician and kind of… my thought process… I kind of looked at some literature and speaking with some other healthcare professionals, I decided that I would rather while, I was younger and stronger, try to tackle any remaining cells in an aggressive way so that I didn’t have to deal with it when I was older. That was kind of my approach because my surgeon had told me, she said "well 15 years ago or so if you had your diagnosis you wouldn’t be recommended to do chemotherapy but the research was showing that there was higher incidences of recurrence in similar cases between women who did chemotherapy and women who didn’t."

Well, both of my aunts went into remission, then they both had recurrences and they had had chemotherapy. I was a bit torn because here it is, these women did kind of what they were supposed to do and it wasn’t necessarily the best option for them at the time. But what I just kept reminding myself was that every single person in every case, despite many similarities, there are always still many different factors that come into play. I just had to decide what was going to be best for me. I kind of had a short-term pain for long-term gain approach. I think was probably one of the thoughts that went through my mind. If I do this now it’s preventative and as we move forward I don’t want to say that I’m never going to get a recurrence but it will lower my chances of recurrence. So I think that that’s probably that went into it for sure.

From that appointment I took away that information and did a bit more research and chatted with a few more people and I was able to come to the conclusion on my own. But I’d have to say I wasn’t afraid to, I wasn’t afraid to tell somebody, to tell a physician that that wasn’t my decision. So I think that it was really important that I just kept up the fact that it was my treatment like and I just stayed with that approach. Like yes, I’m their patient but it’s my treatment and it’s my body and so I just kind of kept that in my back pocket and they had, like they had, I went to the appointment and they already had me scheduled for my first chemo treatment. They had me scheduled for all of these different things and I was just kind of like “I need some breathing.” I need to breathe for a minute. In the course of that period of time I was able to do the research that came to, that helped me come to my conclusion.

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My husband is fairly certain that he doesn’t want to have any more children but I hadn’t really closed that off. With chemotherapy you can often go into menopause, especially if you’re closer to 40 or already closer to menopause. I thought that that was what was going to happen and that was pretty traumatic for me. Just having that decision taken away from me by another decision that I made, made me feel a little bit uneasy and very disappointed. It's not because necessarily we would have more children but because decision is no longer mine. That was a bit challenging. Since that point, I’ve been tested and apparently I’m not at that stage yet so that’s been a bit of a relief.

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Then because I was feeling fine after chemo, I delved right into radiation and that was a bit trickier, only because you’re at the hospital every day so it was, really challenging to try and be motivated to go there for your 15 minutes and then leave and then know that you had to go back and do it the next day. Especially because by that point in time I felt like I was starting to get reinvigorated after chemo. You know it’s been a couple of weeks, and normally that was when I would have to go back in for chemo so my counts were starting to naturally increase. And so I was starting to feel a bit more energetic and a bit more revived, but then I was still at the hospital almost every day so that was a bit challenging. 

 

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I think giving patients a choice goes a long way. Even if it’s not necessarily a yes or no choice but in certain circumstances that’s not always the case. Sometimes with children, they just need to know that they can make the decision and you don’t ask them if they want toast with peanut butter you say “Do you want toast with peanut butter or do you want toast with jam?” And giving them that choice…you’re still going to have toast but which way would you kind of like to have it? I think that patients feel a bit more involved in their treatment if they’re given those kind of choices especially when it comes to something like this.

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With respect to intimacy, I can remember after first telling my husband he didn’t want to touch me. He was very concerned about it spreading from him touching me. Not even in a really intimate way but even at bed. Just at bedtime, going to bed, snuggling or whatever the case may be and he was very concerned about that. And he was just... I kind of had to give him a little bit of a reality check. That kind of isn’t how it worked. With respect to intimacy, it definitely slowed down but it didn’t stop. I didn’t feel like we couldn’t be intimate and he didn’t after a certain point, he kind of got used to everything. He wasn’t, there wasn’t any kind of hesitance. Sometimes from the chemo, it just didn’t happen as often. I was really tired and, or maybe just not necessarily in that frame of mind, because I was like convalescing.