Julia

Julia
Age at interview
63

Julia is married and has three grown children. She and her husband own and operate a holiday resort.

Julia received her diagnosis in 2012. She had discovered a cyst in her breast and wanted it to be removed when a friend of hers, who is a doctor, advised her to always get any lumps removed. She was referred to a surgeon who was willing to remove the cyst but was worried that removal would cause scar tissue making it more difficult to detect the presence of other lumps. The surgeon wasn’t worried about how the lump felt but suggested a mammogram and ultrasound to be sure. The results of the mammogram were good but Julia was advised to have a follow-up after 6 months. During the second mammogram, she learned from a nurse that something abnormal had been found in her first ultrasound. Julia underwent further testing, an ultrasound and a needle biopsy, but the results remained inconclusive. A core biopsy followed just before Christmas. Julia had a very strong feeling about what the result would be based on the way the surgeon acted, although she would likely only find out after Christmas. Julia and her husband decided not to tell anyone until the results were known. In January, she was called by her doctor with the news that it was indeed invasive breast cancer. After a lumpectomy, with unclear margins, Julia decided to undergo a full mastectomy. She understood from all   she had heard and read that she would not need radiation if her breast was removed. So, she was very upset when her oncologist, during her first visit, to be told that she needed to see a radiation oncologist. Julia was afraid that she had lost the breast for nothing. However, the radiation oncologist, who really took his time to explain the process to her, agreed that there was no need for radiation. Julia tried to take Tamoxifen twice; the first time she felt very tired and with the second try she experienced extreme anxiety. Her oncologist threatened to refuse to continue seeing Julia when she decided to stop taking hormones and refused to undergo an oophorectomy. They worked it out and Julia was OK to stop seeing the oncologist. She has since been receiving treatments from her naturopath. Julia’s mindfulness practice has helped her through many difficult moments, such as when she is waiting for test results; it helps her to say to herself that she is fine in the current moment. Julia’s relationship with her husband and family has deepened over the course of her treatment, and in the big scheme of things she feels that missing a breast doesn’t make a big difference. She described the moment when she rediscovered joy (during meditation one day) as a beautiful experience – along with a great sense of relief.

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

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I went once but, they were lovely very welcoming. Probably, well the majority seemed to be in their mid 80s and they had known each other for a very long time and had had this group for a very long time. So they were all “Oh we hope you’ll come back.” Because they realized that they were very insular but they were very complete. And it was nothing that did, they were as helpful as they could be to me but I just felt I was coming into a formed group. It was also that they meet on the same night as the mindfulness group and the mindfulness group for me, it was more support, so it was really good.

Interviewer: And that group was not about breast cancer?

No but it’s, it stems out of the mindfulness based stress reduction program, so a lot of people who have done that program come. So there were other people there who had been through breast cancer but there’s people there who are doing, have... are dealing with all kinds of stress whether it’s... who knows what, everything or nothing.

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And then I found about Willow support group. I don’t know if they’re in Quebec but they’re wonderful.

I’ve been to some workshops with them, they have a lot of resources and their staff, or their volunteers are all breast cancer survivors so you can phone them up and say “This is what I’m going through” and they’re right there and they’ll put you on the phone. If you say “Well I have triple negative” they’ll find you a volunteer who’s been through triple negative to talk with you and if you have whatever. So they’re and they have a lot of materials and a lot of support but I didn’t know about them until quite a bit later.

I actually went to my surgeon and I said “You know, it would have been really helpful, would it be all right with you if I get some stuff from Willow and give it to you so you could at least give people the phone number, then they could have that” and she said “Oh absolutely”. So no, that was a good resource that would have been nice to know about earlier.

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Well, it makes me be careful. Again, it’s sort of have this low Oncotype which is very optimistic but I also have a family which there’s not a lot of cancer in my family. But, there’s nobody in my family that’s had cancer that hasn’t died from it and fairly promptly. So again, I’m riding that balance and so I don’t know, is it just... am I the lucky one who’s... Because I’m healthy, although my dad was really healthy, my grandmother was very healthy, my uncle was very healthy but they died of cancer. So is there something in our genetics. It’s not because none of them had breast cancer but is there something in us that makes us a good environment for cancer. So I have that and balanced with my low Oncotype and I’m trying... I think it’s taken until the last 6 months to really feel like I’m riding that in a comfortable way down the middle. To be attentive but not be neurotic or too worried.

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I think maybe I’m not quite the same person. I think I’m better at saying no. I think I’m better (at it). It’s not that I couldn’t say no before and it’s not that I wasn’t full of ideas but I think that I’m more assertive I guess. I think I am more assertive for the things that are important. I would say to (name husband) we should go on a holiday and then we’d get busy and it wouldn’t happen. Now I say we’re going on a holiday so it’s, it’s not different, it’s "different" you know what I mean. It is a little different, but it’s not different. I’m not different but I’m... I have more stick to it for what I think. Rather than saying this might be a good idea, I’m saying it is a good idea we’re going to do it. So I think that way, I might be different I don’t know... you’d probably have to ask other people.

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My boobs were an important part of my sex life and I miss that one for that reason. In terms of intimacy, erotic reasons, I guess, but other than that, if anything, it’s deepened our relationship. So it’s not an issue, my other breast is different now. I don’t really know what that’s about but, no, I wouldn’t say in the big scheme of things it makes a difference. One way or the other. And I’m not that keen on wearing a prosthesis. I often don’t in the winter and I absolutely don’t when I do yoga or if I’m swimming. I used to, it’s very uncomfortable so to me comfort is, how I feel is much more important than how I look. And (name husband), I always say to him do you mind if I walk around with one boob and he’s like "It’s your body I’m fine whatever you want." So and I think I’m lucky that way because I think a lot of men would not feel the same way.

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So I felt so much better once I got off tamoxifen and I went through the summer and then I went back to see her.  At the beginning I was going every 4 months and then she said, “Okay, well now do you want to try it again?” And I said, “Well not really ” and she said, “Well that’s your choice, it’s your choice but if you don’t go back on it, I won’t be your doctor anymore.” So then I’m like, “Oh okay.” I was a little bit upset about that and then I went to speak to my naturopath and he said, “Well first of all, she’s not allowed to do that. That’s been tried in times past and apparently that’s been to the Supreme Court, and it’s illegal to fire a patient for making a choice that you offer them. I don’t know if this is true or not but this is what I was told. Anyway I was pretty comfortable with my decision and I was like, “Well I don’t really need her, she doesn’t do anything anyway and she said," If you ever have a problem I’ll see you right away. You have a family doctor, you have a surgeon, if you need me it’s not like I won’t help you but if you’re not going to comply,” she said, “I have liability insurance issues I can’t be your doctor.” So I said, “Okay that’s fine,” and then we agreed, I think, that I’d see her again and in the meantime I did some reading and then I thought, “Well you know what maybe I will try tamoxifen one more time.” So I tried it again and  I committed to myself that I would do it for 3 months and she was pretty happy that I would try that and then it went really badly again but it wasn’t fatigue so much as I got this terrible anxiety. Again, I had the other things like I lost my appetite and I lost weight and I had dry eyes  and a few other things I can’t even remember but I had this terrible anxiety and I just I didn’t want to live that way. And so I stopped after 3 months and immediately again I felt way better without it, so now that’s not something I will consider, but then she did offer to remove my ovaries for me so I could take something different.  I said,” Well I would consider that, but maybe we could try chemical suppression and try this new drug,  because if tamoxifen made me feel terrible, and I can’t live like that, if you take out my ovaries and it does the same thing there’s no way to fix it so I don’t really want you ripping out my ovaries.” So she again didn’t really like that and I think you can tell I’m not so keen on my oncologist.