Joanne

Joanne
Age at interview
44

Joanne (44 years old) lives with her partner in one of the Atlantic provinces. She works full time as a manager and in her free time she is active as a gymnastics coach.

Joanne was diagnosed in 2009 and has been on hormone therapy for four years following surgery, chemotherapy and radiation therapy. Joanne found the lump herself but was not worried in the beginning as her doctor thought it was related to an earlier ectopic pregnancy. She didn’t follow-up for a while and just wished for the lump to be gone, but met with a friend one night who was concerned about a lump in her own breast, making her more aware of the seriousness of the lump. Encouraged by her husband, she decided to go for another screening. Initially she was diagnosed with a stage 2 breast cancer but later it was found that the cancer had spread to her lymph nodes. More testing showed some unidentified spots on her liver, which meant that the breast cancer could have metastasized. Unfortunately the health care professionals could not tell if the spots on the liver were cancer until after her mastectomy, and other treatments had finished.  It turned out that the spots on her liver were harmless.  Joanne also decided that she would have a hysterectomy given that her cancer was oestrogen positive. At the moment she is looking forward to stopping the hormone treatment to see if certain symptoms such as tingling in hands and feet, brittle nails and teeth, loss of taste and joint pain will disappear. During her treatment she organized a ‘Joanne’s Journey’ show using gymnastics and humour to show people’s different responses towards breast cancer vs mental illness (her son had recently been diagnosed with a mental illness). She has also been a member of an advisory committee to improve breast cancer care in her province. 

Time since diagnosis
6 - 10 years
Phase of treatment
Remission

Videoclips

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I guess I first noticed a small lump on my breast myself. I was fairly young at the time. It was a couple of years before my diagnosis that I noticed a lump. And the first doctor I showed it to wasn’t concerned at all. He said, “You’re young,” and at the time I had had an ectopic pregnancy. So he had said maybe with hormonal changes with the pregnancy and my body going back to normal, it was changing, my breast tissue was changing, and he said to check it again in a couple of months. And in a couple of months it seemed to have changed or maybe I wanted it to have gone away, but it was still there. So then I had a friend who had a lump on her breast and I left her one night, her and her husband, and they were quite concerned about the lump on her breast. So when I went home, I talked to my husband about her reaction. I said, “You know, my friend is reacting with a lot of worry about this little lump and she’s young too and she seems to think there might be something to it.” So he said, “Yes Joanne, I think you should be worried as well.” So it was actually my husband who pushed me go get it checked again.

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That was funny, my first mammogram visit. I get they have to go through all those questions .Of course now I’m going all the time, every 6 months or I think it’s only once/year now. Anyway they have to go through all those questions in the beginning and the poor technician at one point she said, “So do you have any other breast complaints today?” and I said, “Besides the fact that I only have one?” And she was very taken aback because I just try to make light of it. That’s what works with me and they still have to go through all the questions every time and I’m going really?

’t know they could change some of that to make it more personable. That’s one thing I find the medical field, the breast cancer, I mean the mammogram questions is a prime example. If you go, I know for a normal woman you have to ask all those questions as part of your protocol. You have to have your checks in your boxes but if you’re looking at somebody who only has one breast or somebody who’s gone through breast cancer you can tick some of those off yourself without having to ask. I’m a pretty comfortable, confident person but anybody who’s really emotional or sensitive to the breast cancer or how it’s left them and there are a lot out there who are really sensitive.

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But the first reaction was, if I’m dying, I need to do something better with my life and then after a while and a lot of reflection I guess… I think when I took that time off work, when I decided I wasn’t going to work, because there were a few people shocked that I… because some people work through this… “You! I thought you were going to be the type that would work through this.” Or “I thought you were going to be the type to try to work through this.” When I decided not to work, I think that’s what I needed. I think I needed a lot of thinking time, I think I needed me time, I think I needed holy poop I might die! Let’s re-evaluate my life. It was a lot of reflection that made me realize I’m happy. I’m a whole lot happier than most people in this world. I’m lucky and I have a whole lot going on.

Text transcripts

I tried, well the tingling like... I couldn’t be anywhere and I was going like this... my hands were all like..... I tried everything to try and get rid of that. I went to a chiropractor, I went to physio. Well I went to physio first for my arm anyway, for my lymph nodes that were removed, so I went to physiotherapy but only in the beginning, post-surgery, to get the movement back. I tried massage back then and then I stopped for a while. I went to a chiropractor to see if he could help with the nerve damage stuff but no. He told me it’s not going to help, you should try massage again. Try… more

In the beginning... we hear about people on chemotherapy. You think they’re on chemotherapy and they’re hooked up to IV for all this time, like somebody’s doing chemo. But you’re in for one day or two days, the day before you need blood work done and the next day you need to be hooked up for a couple hours or I don’t know, maybe it was the whole day. I think people believed that your off a week of chemo and then the 2 weeks that you’re not on it. It’s the week of taking oral drugs and leading up to that 1 day on the IV for me. So I don’t think I knew. Some people when I’d talk to them… more

I’m carrying a lot of extra weight and I was blaming that on the drugs. My doctor, who did my mastectomy, mentioned that I had gained so much weight that my port had moved so he had to make a second incision, and I said “Yeah, they said the tamoxifen puts some weight on you,” and he said, “Well Joanne, probably 10 to15 pounds but not this much and I said, “You know, you got to watch what you’re doing.” And he is really blunt and honest with me and I knew that. So I think I got in a place where I was blaming the drugs and the chemo and the treatment and comfort eating or changing my… more

I got joint pain from the drugs I am on. I am still on Aromasin, but I was on tamoxifen for the first couple of years and then something, my cancer is estrogen receptor positive so I am more receptive to all the female cancers of course. So something showed up on a pap smear, I don’t know a year out, a year and a half out, no I don’t know. Something showed up on a pap smear a while after treatment and they had to do an exploratory because there was something suspicious and so they explained to me at that time that, “Because your estrogen receptor positive, anytime something looks… more

January was 4 years that I have been on Tamoxifen or Aromisin. So I said... that is 4 years, this January, just passed, I was going to go off, I was still blaming the fact that I was taking these drugs for all these body changes that was going on. I had my gynaecologist tell me no Joanne some of these effects will still be there. It is not the Aromisin and not the Tamixifen. So I really wanted to go off just to see. Anyway, I had my friends talking to me to stay on it for the fifth year because most research says 3 to 5 years doesn’t make much difference. So I stayed on it as they said "… more

When you were talking about the physical changes everything is dry. Everything is dry. We were, well we both were fairly intimate people, and very spur of the moment. Now it’s like... you’ve got to plan to have sex and it’s really...

Interviewer: To kind of prepare yourself?

Because I had to prepare, yeah! So that’s a bit frustrating and my husband is so sensitive. He’s always afraid he’s going to hurt me. That’s... it just changes everything, but we’re still working on it 4 years later. We’re still dealing with it, it’s like "Honey it’s okay. I don’t want… more

I met lots of women since, who feel they’re losing their womanhood. I didn’t care about that, to this day I still don’t have any plastic surgery done. I just can’t find the time, it doesn’t bother me that much, I guess maybe if my breast was bigger it would bother me more but it doesn’t bother me as much. So we decided that (a double mastectomy) and the next day I went in for surgery. I spent 4-5 days in the hospital. I guess the surgery itself was the hardest part, probably the day they took the bandage off, just that’s when reality hit I guess. It was staples, I had had a C-section and a… more

When I came back was when I realized that my body is not going back to normal. It’s not going to happen. To this day, 4 years later, I know my body is not normal. I know that and I’ve asked several doctors; I’m released from oncology now, completely, but every time I asked, they told me the same thing. “If you still have those effects now, it’s not going away. That’s not going to get better with time. Joanne, that’s going to stay.” So I have tingling in my hands and feet and my nails are still cracking off all the time. I get this tingling. When I sleep at night, I wake up in the morning… more

So I think I got in the place that I was blaming the drugs and the chemo and the treatment. I was comfort eating or changing my lifestyle because I didn’t care for a while. Nobody really pointed that out. So it took a surgeon to really smack me in the face with it. Then I started again, that’s when I started getting in shape again, trying to get in shape and eat healthier. I read all the book that help to prevent cancer and just try to go back to what I needed to do to get healthy. And then I realized that I had to change my lifestyle. It wasn’t going to be… treatment is over, cancer is… more