Being Diagnosed with Advanced Breast Cancer
Maria Bodner is a retired nurse living in Victoria, Australia, with her husband. In 2013, Maria went in for her routine breast screen test. The following day, she received a phone call from one of the nurses asking her to come in so that they could review her results and Maria knew it was breast cancer.
Maria is a participant in the TUGETHER clinical trial, which aims to find out if adding tucatinib and pembrolizumab to the usual treatment given to people with advanced HER2-positive metastatic breast cancer slows down the growth of the cancer.
“My name is Maria Bodnar. I live in Maribyrnong, Victoria. I’m a retired nurse, and I have two children. I’ve been married for 48 years, and our son is 45 years old and married with four beautiful daughters. The oldest one is 15 and the youngest one is eight, going to be nine.”
“They live in Brisbane, so unfortunately, we don’t often see them as much as we would like to, especially during the COVID. That was a really hard time because we did facetime them often, but that’s not the same as having them around here and getting cuddles. So, they’re really beautiful. They’re coming in May again to visit us.”
“I also have a daughter who lives here locally. She’s unmarried, she’s 43. And I have a sister and a brother that are very supportive as well. And I’ve got a few very good friends that are always offering me an ear so I can complain if I want to.”
“Luckily I have some friends that are health professionals, so when I talk to them about something, they understand what I’m saying, you know, and I’ve got one very good friend who’s actually an oncologist. So, it’s sort of reassuring when she provides me with advice and all that, but often it’s just sort of having somebody who understands and sort of offering that ear to listen so that I can vent.”
“Other than that, I rest, I go to Peter MacCallum, I look after my husband, look after my house, socialize with my friends and family, I read sometimes but I find that my concentration is not the best lately. I like to watch movies, mainly on YouTube.”
“Occasionally when my husband and I are feeling okay, we’ll go for drives. We used to enjoy camping, but we can’t do it anymore. We go to church, we try to go regularly, and I pray sometimes, but not always, and that’s about it.”
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Maria Bodner is a retired nurse living in Victoria, Australia, with her husband. In 2013, Maria went in for her routine breast screen test. The following day, she received a phone call from one of the nurses asking her to come in so that they could review her results and Maria knew it was breast cancer.
What Led up to Your Initial Breast Cancer Diagnosis?
“So, I was diagnosed in 2013 and the diagnosis was made after I had my routine BreastScreen test. When I had a phone call from BreastScreen, I was at work and they rang me up. They said to me ‘oh you need to come in, we have reviewed your scans’. I remember saying ‘sure let me have a look in my diary and see when I’m free’, and the lady said to me ‘Maria you don’t understand, we want you to come in tomorrow, we need to see you because you have cancer’. So, I went there, had a biopsy, had the surgery, and started chemotherapy and radiotherapy and I’ve kept on going for the last 10 years.”
“I was diagnosed with stage two, HER2-positive, estrogen-positive breast cancer in my right breast. I often say that I’m not really normal, because it didn’t really affect me the way some people are affected. Like a lot of people cry and they feel sorry. I sort of sat there and thought ‘oh well this is just my situation’, and it might be because I worked in the field in oncology that I didn’t cry as I’ve seen so much.”
“So, I thought to myself, I’m one of those women that has breast cancer, so what can you do about it now? And I remember the time when I was there talking to the surgeon and he said ‘Maria you need to have surgery’. So, I was booked in on the Saturday and I just started looking and reading about what I could do, how I could manage the treatment, if I should change my diet, all of those sorts of things.”
“I think my husband and my family took it hard. I think the way I informed my family possibly was a bit cruel because I invited them all over for dinner and told them together, as I didn’t want to go to everyone individually and say ‘hey I’ve got breast cancer’.”
“So, we had dinner and after dinner we had a talk, and that’s when I informed them. So, they were all very upset, and that’s what upset me. And I mean, I still can’t take people pitying me or crying over me. I’m much better off staying busy and working so I don’t think about it.”
“I think there are still a lot of people that see cancer and everything that’s associated with that. You know people often think that you have cancer so you’re dying, but it’s not always that way, you know, people live for many years with cancer, and they have good quality of life and all that. But I guess sometimes for some people it’s a bit hard to comprehend that and to understand, and I guess when it’s somebody in the family that you love, it makes it a bit harder.”
“I chose to remain positive, to take one day at a time and hope for the best. And it has worked for me so far.”
How did you find out about the TUGETHER Clinical Trial?
“Well, I was first introduced, or I was informed about the TUGETHER trial by my oncologist, and she thought that it would be a good way for me to go and provided me with information about the trial. I also did my own internet research, so I looked at the drugs, what they’re doing, and my oncologist thought that immunotherapy especially would help because that would work on my immune system, to help my body to fight the cancer.”
“So, I read all about that and I was bit concerned about side effects and we discussed all those side effects because they gave me the consent form with all the information. So, I read through it and I highlighted things that I didn’t know, so we could discussed it all. She explained everything to me, and I felt a lot happier about the treatment. So, I said ‘When can we start, I’m ready’.”
“I believe it’s running for two years, but if I’m doing okay and if it works on me, I can stay on the treatment further if it keeps cancer under control. That’s my understanding of it and what I read in the consent form.”
“So, I had a complication after surgery because I built up a lot of fluid and swelling. So, I was one of those patients that was a wearing draining tube for six weeks, because it kept on draining. So, when that healed, I started the first line of chemotherapy. So I had that for six cycles and finished that.”
“Then I started Tamoxifen and I continued with Herceptin because Ihad HER2-positive cancer. I had six weeks of radiotherapy that went well. I didn’t have major side effects, and I worked right through it because I worked at Footscray Hospital. Radiotherapy was at Western Private, so I would go during working hours. They would zap me and I would go back to work and continue business as usual.”
“I was on Tamoxifen for four years, so I was sort of in remission and I was very happy. And then one day at work I went for a dinner, and I bought myself salad in the cafeteria and the came in the office and I felt nauseous, and I thought that it was unusual because nausea is not something that bothers me.”
“So, I talked to a social worker and I said, ‘I had this salad in the canteen and I feel really funny’ and she said ‘oh Maria, you should know better than that you should never buy salad in the cafeteria’. But next morning I got up and I was nauseous again, and it kept getting worse and I thought this is not salad related.”
“So, I went to my GP and had an ultrasound and a blood test which showed that my liver enzymes were elevated. So, then I had an ultrasound of my liver, which showed multiple metastasis. And that sort of hit me because I sort of felt that maybe I wasn’t doing the right things because the cancer started spreading.”
“And again, I went to see my oncologist and had the liver biopsy and started again with the next lot of chemotherapy, which worked well. Then I started coughing. I went on an overseas trip, and I kept on coughing, just an irritating cough, but I didn’t know what was happening. So, I came back and went to see my doctor again at Western Health and she said to me that I should go to Peter MacCallum, because there was this new trial called DESTINY 2.”
“So, they made the referral for me and when I got there, they did a CT scan, pre-trial screening and all of that, and they found through the scan that I had lung metastasis and I had brain metastasis. So before starting DESTINY 2, I had to have radiotherapy to my frontal lobe and to my right temporal lobe for metastasis.”
“When that settled down, I started the DESTINY 2 trial, and I was on it for about 20 months. It worked well. I had a PET scan about eight months after I started the trial and it showed no evidence of cancer, so it was fantastic. Unfortunately, though that lasted only about one month or two months, and of course cancer came back.”
“So, I was off the DESTINY trial and started on standard treatment called TDM one, and I was on that for almost two years. Again, I did well, but then my cough got worse so I had a bronchoscopy, which showed that cancer on my lung has spread. That’s when Dr Loi thought that maybe I should try a different trial.
And when TUGETHER started I was accepted for that, so that was about four weeks ago, and I had my first cycle of the TUGETHER trial. At first it was tough, and the side effects were quite harsh, but I had my second cycle last Thursday and this time I’m doing a lot better.”
“They reduced my dose slightly because one of the drugs, capecitabine, affected my stomach a little bit too much. So, they reduced the dose by 20% and that seems to be good thing. So, yeah today is what five days since I had cycle two, and I’m doing well, so that’s great.”
Why did you Decide to Participate in a Clinical Trial?
“Well, I believe clinical trials are very good. I don’t think I would be here today if the women before me didn’t participate in the Herceptin trial, because I would’ve been dead years ago. So, I think it’s good because it’s here, it’s available. I don’t have to pay great amount of money for the new drugs. It’s my hope that it will help me, but also the results from the trial will help people after me because I’m here today because people went on a trial, and they were trialing those drugs which have now been approved for use.”
“They sort of found out what worked and what didn’t work, and how it all works. And with Peter MacCallum, regardless of whether I was on a clinical trial, I still had the most exceptional care. I have a fantastic oncologist and nursing staff. The contact I receive with the trial is very good, there’s possibly more support because we communicate regularly through email because I find it a lot easier.”
“But then always they tell me,’ I’m only phone call away’, so if I have a problem and I ring her up. Like after the first cycle when I rang up, the doctor rang me straight away the same afternoon. So I have continuity of care, which is very important to me because I’ve been seeing the same oncologist for last four years, and it’s sort of important to me that we build rapport.”
“I feel relaxed, and I feel safe. I know I’m in good care. My doctor releases all the scan results and my blood test and everything to me because I like to see everything, and for me it’s important to have all the facts to know what’s happening in my body.”
What Would you say to Someone who was Thinking About Participating in a Clinical Trial?
“Well, I think it’s important for me because it’s a new drug. Like I think this treatment that I’m getting, you know, it’s not available yet in Australia and if it was, I know it would cost quite a bit of money to do that. So, I’m privileged to have that drug that will potentially help me. And once it is proved on the trial that this drug is effective for people with breast cancer like mine, it’ll be approved, and it’ll be on PBS and it’ll be treatment available as a standard treatment for other people.”
“It’s important for me because it’s my life, but I guess working also in oncology for so many years and watching what women went through, I think new drugs and new treatments are prolonging people’s lives and improving quality of life and all that. And if we can continue to help that, it would be good. I used to always tell my patients when I was looking after them that you have to be here because there’s always a new drug.”
“I think the more new drugs we have and the more availability of the treatment, it’s better for the older cancer patients, not only breast cancer, but all other cancers. I’m usually positive person anyway. As I said earlier, when I was diagnosed, I sort of felt I had two options. Option one was maybe just give up and say, ‘okay, I’m dying that’s it’. Option two was to be positive, see what I can do, get the treatment that’s available, and just live one day at the time.”
“I think option two worked for me being positive because I think stress is a big contributor to cancer, so I sort to try not to be overstressed and overthink and panic about things like in two years’ time I might not be here because I’m here today and I’m like the boss.”
Why is Donating to Breast Cancer Research so Important?
“Well, I think with any treatment or trial or anything, financial money backup is very important, so supporting cancer research or supporting any sort of any research is very important. I mean, I was contacted recently by a fundraiser, and I can’t afford to give lots of money, but I have decided to give a little bit every month towards the research, and every little $5 or $10 donation counts.”
Do you have any Fears or Hopes for the Future?
“Fears? I have no fears. I have accepted my mortality. I would like to be around when my granddaughters grow up. I would like to see them growing up and I would like to enjoy life, but in terms of fears, I have none.”
“I know the day will come that I will be told there is not much else we can do for you, and that’s okay. I mean when I had my brain metastasis, I thought ‘that’s it’, and not because I thought ‘oh I’m not going to pull out through this one’ because I did, I had radiotherapy and a craniotomy, and I survived.”
“Somehow, I’ll keep on going. Or just enjoy as much as I can and travel when I can. Unfortunately, I can’t travel much with my husband because he’s unwell, and he depends on dialysis. So, I was talking yesterday with my sister, and we might go on the train trip to Darwin or something like that, just something for us to look forward to.”
