I try to make the best of every day and to enjoy it as much as possible.

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Doris, 62 years old

“It is an unpredictable disease. But at the moment it seems as if I have a little more time on this earth.”

In late 2006 I was at my gynecologist, and when he examined me he found two lumps in my breast. He referred me to a hospital for a mammography, and the was confirmed. Directly after the mammography, they started doing various other examinations: they tested my lungs, my heart, and all kinds of things. I was in shock and didn’t know what was going on. I felt like a package on an assembly line. I had no time to think. The doctors would have preferred to keep me in the hospital straight away. Then I said: “Stop!” I had to sort myself out first and just went home. I needed to first take in what they had told me.

Then I had surgery on both breasts, and the hospital doctors proposed chemo and radiotherapy. It all really scared me. Chemotherapy was the worst thing I could ever imagine. Although I had never had it. Then I contacted different doctors to get information. I decided not to have chemotherapy. The oncologist in charge said: “Then there is nothing I can do for you.” My gynecologist was of a similar opinion. Then I found myself a new gynecologist.

Following surgery and radiation I had rehabilitation to recover from the treatment and mental stress.

I thought my life would be over

The cancer came back in 2008. At that time, many things changed in my personal life, too: My son moved out, the house was too big for me, and I was no longer fit enough to work full-time, so I reduced my working hours. All this put a lot of strain on me.

In the first operation, quite a few lymph nodes were removed from my armpits. This makes my arms hurt time and again. In the fall of 2008 I had a second operation, where one of my breasts was removed, and I coped quite well with that.

The following January I went to a follow-up examination. The gynecologist did an ultrasound of my abdomen, and she saw something she didn’t like and sent me to have an MRI (ed. note: ) scan. At first, the doctor who did the MRI told me that they couldn’t see anything worth worrying about.

At my next appointment, my gynecologist told me that I had metastases in my pelvis. I was flabbergasted. I hadn’t felt a thing! I had only had some symptoms in my shoulder, and my orthopedist said that they were caused by a jammed tendon. Again, many tests were done and the news got worse and worse: metastases in my pelvis, my spine, my chest wall, my shoulder. I felt paralyzed. I asked the doctor whether there was anything at all she could still do for me. I thought I would need a wheelchair, and that my life would be over then. The doctor smiled at me and said: “We can get this situation back under control.”

I find it very hard to wait for the examination results

I had radiation. It made my bones hurt every now and then, but that's no longer a problem. At the moment I often feel worn out and tired as a result of the radiation. It is exhausting. But I don’t feel the radiation itself. I also get different drugs every two or four weeks. At the moment I am physically quite okay. I still feel the mental strain. Every time I have a follow-up examination I wonder whether they will find something new.

I also find it very hard to wait for the examination results. It does take a while before a test can be done to find out whether the treatments have had an effect.

When the tumor came back, I was in a really bad way. And felt down about my personal situation, too. I was constantly tired, exhausted, and everything seemed to be too much for me. I felt unable to cope anymore. During that time I also got psychological help and had psychotherapy. I don’t think I could have dealt with it otherwise. I have no family to support me, and my son lives far away. I felt that I couldn’t go on, that I didn’t have any energy, and that I wanted it all to stop. Besides psychotherapy, support from friends helped me during that time.

You can't see that I’m ill

Although we live far apart, I do have a very close relationship with my son, and we talk about my disease as well. We can speak very frankly, and that helps me. It's important to me that he knows about it. But because he lives so far away, he can't help me with everyday things.

It's quite difficult for my brother to deal with my disease. For some reason he can't handle it when I feel poorly. You can't see that I’m ill. On the contrary: I appear to be fine because I can rest a lot. I don’t feel any pain, either, so that doesn’t wear me out. Some people also say things like ‘Stop making such a fuss, you look just fine.’

Meanwhile I've retired because I haven’t got the strength to work that much anymore. Back then my employer supported me a lot. He really understood me, and my colleagues were also very nice to me. I was on sick leave for a very long time, and then I was on part-time retirement and only worked a few half-days a week. That was a great relief. Now I've retired completely, and work two half-days a week to earn some extra money. That’s great for me. It keeps me in touch with the working world, too.

At some point you accept the situation

I'm actively involved in a self-help group, and that does me good. The women there have had similar experiences and know what I’m talking about. I feel like I’m in good hands there.

At some point you accept the situation. It’s just the way it is. I have now lived with this disease since 2006. You come to terms with it. I try to make myself as comfortable as possible, and to keep busy.

I play the piano, for example. It was a childhood dream of mine. I have always wanted to play, but it wasn’t possible when I was a child. Now I have piano lessons every week, I practice every day, and I'm really enjoying it. Another thing I like doing is travelling. At the moment I don’t have that much strength, so I prefer taking short trips. But when I'm feeling up to it again, I’ll go on longer journeys, and further away. And I’m learning English on the Internet. I really enjoy that too.

When things calm back down, I would also like to go swimming again, although swimwear is an issue. I need a swim suit that can hold my prosthesis. At home and in my usual surroundings, wearing a prosthesis is no problem at all. I have a small breast, and sometimes I don’t wear a prosthesis and just put on a wide blouse. But once I had an experience at a public swimming pool, when I was in the shower and a school class of little girls came in, and I just thought: What do I do now? Then I broke into tears. That was hard. But there are women who don’t mind at all, they even go to the sauna. But I can't do that yet, I’m not ready yet.

A seminar on dying was actually quite a relief

My first question after the surgery was: How much time do I have left? When I got the , all I could think was: cancer is deadly. And now I think about death. I don’t find dying as terrible as suffering for a long time. I once went to a seminar on dying, which really helped me. It was actually quite a relief. I'm not that young anymore. I have had a good life, and have experienced many things, and have seen a lot of the world. My greatest fear is being in a lot of pain for many months, and having to suffer. I think that if the Lord is coming for me, He will take me.

After I first got the , I took care of several things straight away. So that my son will be able to do things after I’m gone. That was very important to me.

Breast cancer is a very personal disease that is hard to predict. So it is difficult to give any general advice. I find it very important to trust your doctor. You should feel that you are in good hands, and be able to get the necessary information and have things explained. Normally, decisions do not have to be made immediately. You can take your time to think about it, and then decide for yourself what to do.

I was very insecure at that time because the doctors sometimes contradicted each other: one wanted to do this treatment, the other wanted something else. I wasn’t sure whether they were being honest with me. The doctor in the tumor center helped me a lot during that time. She smiled at me and said “Of course we can do something.” She restored my hope. I know that my breast cancer can't be cured anymore, and that I'm chronically ill now. But you can live with it. At the moment I haven’t got any problems. I would be very grateful if it would stay like this for many years.

It is an unpredictable disease. But at the moment it seems as if I have a little more time left on this earth. I try to make the best of every day and to enjoy it as much as possible.

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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Please note that we do not provide individual advice on matters of health. You can read about where to find help and support in Germany in our information “How can I find self-help groups and information centers?

Updated on April 7, 2016
Next planned update: 2021

Authors/Publishers:

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

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