Amanda

Amanda
Age at interview
32

Amanda (32 years old) lives in an Atlantic province with her partner. Amanda works as a human resource manager in a health care setting but is currently on long term disability.

Amanda was diagnosed in 2014 and was about to undergo her third chemotherapy session at the time of the interview. Less than 6 months ago Amanda felt a lump in her right breast and instinctively felt that this wasn’t right. After a waiting period of 3-4 weeks, she underwent several tests (ultrasound, mammogram and biopsy) and then met the family doctor who gave her the diagnosis – all within the same week.  During this turbulent period she realized that she might lose her fertility during chemotherapy. Before the start of her chemotherapy, she saw a fertility specialist and started a treatment for egg freezing for which she had to travel to Ottawa (just after her surgery) for an expensive procedure. Fortunately, the costs for the procedure were later covered thanks to a fund raising campaign “the Ultimate Egg Hunt” organized by her local triathlon club, friends and family. She also started on an Lupron before the chemotherapy which may increase her chances to preserve fertility. Amanda had completed 2 chemotherapies at the time of the interview and she explained how she felt about losing her hair, changes to her diet and coping with the treatments as well as the great support she receives from her friends and family. Amanda kept a blog during her chemotherapy which can be found at https://chemochroniclesofamanda.wordpress.com

Time since diagnosis
0 -1 year
Phase of treatment
In treatment

Videoclips

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My partner he’s just ultra-positive. He’s the most positive, so positive to the point where it’s “Are you serious? This actually sucks, there are bad things happening here too.” But it’s okay. He’s really upbeat and optimistic and fun and he looks at the best case scenario and is really big on not letting your mind wander onto the "what ifs" which it happens sometimes. The "what ifs" and what about all these bad circumstances that could potentially arise in the next however many years. But it’s best not to think about it. It’s best for your mental health to not think about the "what ifs" until they’re real. And he’s really good at that, and my parents and my brother ... everyone’s ultra supportive.

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I guess one thing is if you’re ever going down this road with someone who has cancer let them arrive at their decisions and conclusions about their life as they’re ready, as I’m ready. For me having to cancel the Ottawa Half Marathon and the Germany Training Camp and the Muskoka Half Iron Man, I didn’t do it until the last minute. I was like so what if I want to think I could do it for a little while, everybody they knew that I wouldn’t be but like nobody pushed me into cancelling it or nobody was “oh you’re not doing that” or talked about it too much. It was just as the time came and I got there and I realized that it wasn’t feasible. Okay we’ll cancel the flights, we’ll cancel the registration. I’ll do that when I’m ready and I don’t need to be pushed into it. Just let the patient go at his or her own pace. Same thing with work; when I was having these thoughts about “oh maybe I’ll keep working until the surgery” that’s my decision and I don’t need anybody to say “Oh you have cancer you’re going to be off for a year,” I don’t need to hear that. I just… I’ll make that decision in my on my own terms and I don’t need anybody’s input about how long I’m going to stay off work, I’ll just let you know.

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That was like a whole, after finally, so what was it January, February, March 21st I had the surgery and then four weeks later I was in Ottawa for an egg retrieval. And that was, so much had to come together during that four week period. Because we were waiting for so long for, I had the surgery in March and then the pathology didn’t come back until weeks later. Then finally when the pathology was back it showed it was in one lymph node which meant definitely that yes, I would be needing chemotherapy and radiation and the whole shebang. And so, as soon as I found out that chemo was a thing, I knew I’d have to do the egg retrieval, and all that had to happen in one day. It was one Friday where I saw the medical oncologist and then because of where my cycle was and stuff. I had to start the fertility drugs and prepare for the egg retrieval so as to not delay the start of chemotherapy and that was another really hard day. It was really hard on the day when I found out I need chemo and I need to start the fertility drugs today before four o’clock and that was at like three o’clock so it was, that was hard.

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I had the surgery and then 4 weeks later I was in Ottawa for an egg retrieval. That was... so much had to come together during that 4-week period because we were waiting for so long for... I had the surgery in March and then the pathology didn’t come back until weeks later. Then finally when the pathology was back it, showed it was in one lymph node which meant definitely, yes I would be needing chemotherapy and radiation and the whole shebang. As soon as I found out that chemo was a thing, I knew I’d have to do the egg retrieval, and all that had to happen in one day. It was one Friday where I saw the medical oncologist and then, because of where my cycle was and stuff, I had to start the fertility drugs and prepare for the egg retrieval, to not delay the start of chemotherapy. That was another really hard day. It was really hard on the day when I found out I need chemo and I need to start the fertility drugs today before 4 o’clock and that was at 3 o’clock, so it was hard.

I knew straightaway that for me having to do chemo, I was going to do egg freezing. The first day I got the information, I kind of thought it through and thought maybe I shouldn’t do this but then I thought "No" I should, because the main barrier about why I wouldn’t have done it would have been financial and I wasn’t going to let that stop me. Because I don’t know, I think that $10,000 for the procedure and then all the other expenses aside it’s minor over the span of a lifetime for something that’s so important. So I didn’t want that to be the reason why I didn’t do it. So it was kind of like if I need chemo, I’m going to get egg freezing and that’s how it’s going to be and that was it for me, I just knew. It was a lot to think about though, because it’s just, there’s all sorts of stuff about the probability of eggs translating to a pregnancy or not. It’s not overly high, especially with eggs instead of embryos. You’re kind of thinking "God why am I even doing all this is there’s not even a high percentage it’s going to work out." But there is a slight chance, it could always work. Lots of people go through it and it works for them, so I thought why not just make sure the option is there. If I come through this chemo and I can’t have... if my fertility is totally compromised and I can’t do this on my own, then at least I have that option there. Because fertility, losing your fertility is a potential side-effect of chemo. It doesn’t happen to everyone, especially if you’re younger, they say there’s a better chance of your ovaries recovering and coming through the chemo. Okay! But it’s still not a sure thing. I thought if there was something I could do I would do it.

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I don’t know if it’s advice but just for the patient repeating histories of your family and your progression of your illness it’s an emotional thing and it’s hard. So if there’s any way you can read the chart and get some information before you go in there, and not have to ask the person to take it from the top every single time when they have 2 to 3 appointments a day. Do that. Just try and know what you can know before you go in there, even if it takes some time. I don’t mind waiting, sometimes it sucks, but waiting isn’t that bad. I’d rather, if it saves me having to repeat that "Everyone in my family had cancer!" Then that would be nice if you could read up on that. And that’s one thing. Also, for pre-menopausal women who get diagnosed with cancer and who are facing risks with their fertility, let them know that there’s options. We can’t do it here in (an Atlantic province) and it’s expensive but there is stuff that you can do. So just broach that head-on and don’t wait for them to come to you looking for the information. I think that’s really important.

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His being supportive was really important. I just feel I could be...I don’t know, the ugliest kind of cartoon character, (the) Ugly Duckling and he wouldn’t care, that’s how I feel. And that’s really important because, I don’t know, jeez, I’m sure everyone’s experiences are really different and but I can’t imagine it being any different than that and it’s incredible. It’s really hard when you’re feeling just totally paranoid about everything.

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Well, I was fortunate enough to have that choice because the tumour was at a size where I could have a lumpectomy or mastectomy. Also there was just one. So, we had to have the MRI before the surgery because if there had been more than one cancerous tumour in the breast, I don’t think I would have had that choice, but I did have that choice, so, I was fortunate. For people who do have that choice.

Interviewer: Yes it is difficult, because you don’t have all the information.

Oh my God I just I couldn’t even say those terms at the point, when I was being asked to pick between them and it was really hard.

Interviewer: Do you have time to choose?

Well they were like, you can choose, just take you time, and decide what’s right for you, but at the same time, as you’re taking this time to educate yourself and learn, you have this cancerous thing growing inside you, so you don’t want to spend your whole life deciding. It’s like maybe, I had thought after too, I think it was like a week and a bit that I took to decide, and then I had like this micro spec in my lymph node, and I was like, maybe if I didn’t take that week to decide, I wouldn’t have had the cancer in my lymph node and that’s a terrible thing to think. But maybe that’s true, I don’t know.

It’s a lot, it’s obviously one of the biggest decisions you’ll ever have to make, but I think I knew from the beginning which one I wanted to do but then just talking to the surgeon and saying I got the sense that they would lean towards a mastectomy, because it was like, “You’re young you have your whole life ahead of you, you don’t want this to come back.” But I just felt like the mental stress and emotional stress of waking up with no breast, when I had the option not to, was something that I wouldn’t put myself through if I didn’t have to, yet at this point. I know other people are different, other people would just say if there’s any chance of this ever happening again take it all off, but that wasn’t me, and based on the statistics, it’s a safe decision to have a lumpectomy and radiation, so why not?

Interviewer: Did you feel it was okay that that responsibility was put with you as a patient or would you rather have had a healthcare professional telling you “You have to do a lumpectomy or a mastectomy”?

No I’m glad I got to make the decision in hindsight but at the time it was overwhelming, especially if someone, especially if they would say to me, if they would tell me the option I didn’t want. If they would say to me these two options are about the same but I’m going to make you have this one, I don’t think that would have been fair. So, in that way, I feel fine about having made the choice myself, but it was overwhelming. I went a lot on Up-to-Date to find all about lumpectomy and mastectomy and stuff like that too. I can say those words, I couldn’t say that in March, I couldn’t say those words it was terrifying. It was just like, I would cry every time, I said it and now it’s done, and over with, and it wasn’t that bad. It’s like you get through all these various stages of it and they’re not as bad, it sucks but it’s like, you get through it.

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I just think that everything is worse in your mind until it happens. That’s why it’s so upsetting when you get a diagnosis of cancer because it’s terrible and every stage of it is terrible. But then, when you’re actually going through it, it’s just another step of it. It sucks but you get through it. I’m not the first person in the world to have done chemo. I’m not the first person to have had surgery. It’s manageable, you can get through it.