I often forget about my breast cancer

Photo of a woman on the phone

Rosemary, 56 years old

“When I heard the diagnosis I was shattered. I thought, well, this is the end now.”

When my tumor was first discovered, it was still quite small and I had low levels of tumor markers. I had breast surgery, and then treatment with radiation and tablets. Over time, I started coping pretty well with the and treatment.

After that I had rehabilitation treatment. This also included several follow-up examinations, and I went to them without being worried. The doctor said that he saw something in my liver that didn’t look good to him. I immediately thought ‘Oh no, in the liver, that’s not good!’ and fell into a hole. I hadn't expected it at all. There weren’t any signs: I had no symptoms, and nothing had been found in an ultrasound scan six months earlier. To take a closer look, I had CT and MRI scans after an ultrasound. That was a very difficult time in my life.

One thing that was also really terrible for me at that time: My neighbors had sent me flowers and their best wishes for me to come home in good health. But the doctors had already said I probably had liver metastases. I cried a lot. They meant well, but at that moment it was just devastating for me.

There were five metastases spread over my entire liver

When I came back from rehabilitation, my gynecologist had doubts about the because my tumor had been detected at a very early stage. She referred me to the hospital to have more examinations. But they confirmed that I had liver metastases: there were five metastases spread over the entire liver.

When I heard the I was shattered. I thought, well, this is the end now. Many people are afraid of dying when they get this , that's quite normal. Then I had chemotherapy, and the time leading up to the first examination was very stressful and I was very scared. But at the examination they could see that the treatment was working. That was a great relief.

I had a follow-up examination only last week, and the doctor said that there was nothing to see on the one side, and that on the other side there was a lump, but that it was encapsulated and hadn’t changed.

I no longer do things I don't want to do

Nowadays I handle it pretty well. I often forget about my breast cancer and mainly think about how to lead my life so that I enjoy it and only do what I like to do, and don’t do anything I don’t want to do. I look after myself much more now.

Emotionally, I wasn't at all well right after the metastases had been diagnosed. I was very difficult with my family, unable to put up with anything, I snapped easily and cried a lot. I over-interpreted every word and took things the wrong way. This happens to a lot of people at the beginning, but it gets better over time. You don’t have to feel bad if you let your anger out at home once in a while.

My husband was always there for me. He was very understanding, about our sex life too. It's quite normal not to feel like having sex during that time. But the relationship between my husband and me has actually improved because of the disease. We've found new values and don’t get worked up about everything anymore. You also gain a different perspective on some things. You learn to appreciate what’s really important. The rest of the family being there for me really helped too.

A lot of people can't deal with the situation

I got the final that I had metastases just before Christmas. Only my husband and my mother knew about it then. I have two children, and we told them after Christmas. We didn’t talk about it much. My daughter was 16 years old then. It was difficult for her. She didn’t talk very much with me, but I think she talked with her friend a lot. My son is a few years older. I talked more with him.

During that time I also got to know who my real friends were. Unfortunately, we also had to end some friendships then. I think it's normal for friendships to break up at times like this. A lot of people can't deal with the situation. They don’t know how to talk to you.

The support group is very important to me. I really value the meetings and the contacts I have there. I'm quite open about my disease; it was never a big deal for me. The group is a lot of fun and it does me good to be there for others too, and to help them.

During rehabilitation they also offered psychological support and help. I didn’t need it. But everybody has to decide for themselves. Many people find it very helpful to talk with a psychologist.

I was lucky, I tolerated chemotherapy quite well

It was always very important for me to know my family will stand by me and that I'm not alone. My husband always came with me to the appointments. When I had my first chemotherapy, for example, it was a very difficult day for me. I felt really anxious and frightened, and was wondering what to expect. That was a very strange feeling that day. But I was lucky. I tolerated chemotherapy quite well, without major side effects. My bones hurt a bit at first. But I never had anything like nausea.

Back then the doctors had prescribed a drug that I took for years after having the treatment for my metastases. This spring I decided that I didn’t want to take it anymore because I was no longer convinced that it was helping me. I didn’t make that decision light-heartedly. I talked with my gynecologist, and she supported my decision. The doctor at the hospital didn't agree, but he said it was my decision, and that he would continue to work with me and would schedule follow-up appointments a bit more frequently. That’s absolutely okay for me. I must say that we get on very well. And I regularly go to the appointments, that’s very important to me.

It's important for me to keep on taking part in life

After I had breast surgery I was on sick leave for a long time. Then I returned to work: part-time at first, then full-time again. The company doctor and nurses took care of me. Then I had my second rehabilitation where the metastases were diagnosed and I went on sick leave again. I then applied for disability pension, which was no problem to get. I was just very disappointed to find out how little pension I would be getting after 40 years of work. That was a blow for me. Now I work a little to get some extra money. I don’t only work for the money, but also to get out, to do something, and to take my mind off things. It's important for me to keep on taking part in life.

Back then, when I got the , I did what the doctors told me to do. You don’t know much about the diagnostic and treatment options. You learn that over time. If I were in a situation like that again, I'd react more calmly and get hold of some information first.

At some point you get back up again

Everyone has their low points at the beginning. This shocks everybody. And I think everyone is frightened. Life does change. It’s not as easy anymore. It’s quite normal to fall into a hole. But at some point you get back up again and focus on other things. It takes some time, that’s quite normal. Examinations where everything was normal helped me a lot. It calms you a bit.

I'm aware that the disease can come back any time. I take care of myself and use herbal remedies, and I try to eat well and to get some exercise. I started doing Nordic walking with a woman I know; we've been neglecting that a bit lately, but we want to start again. It does me good. And I go dancing regularly with my husband. We love it!

Because of the media, breast cancer is much better known than it used to be. What I find alarming is that they write so many things that aren’t true. Many people are given false hopes. A lot of money is spent on things that don’t work at all. It's important to get detailed information before deciding to have a treatment. I want to know what will happen to me and to my body.

Sticking your head in the sand is not the answer. Life goes on and you can play an active role in that: for example, by looking after yourself or talking about how you are. I find it extremely important not to keep everything bottled up inside.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Updated on January 23, 2024

Next planned update: 2027

Publisher:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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