Interview: “Metastatic breast cancer”

“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 diagnosis 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 shocked 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. All this really scared me. Chemotherapy was the worst thing in the world that I could 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 strain.

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 MRT (ed. note: magnetic resonance tomography). At first, the doctor who did the MRT told me that they didn’t see anything we needed to be worried 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 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 it got worse and worse: metastases in the pelvis, the spine, the chest wall, the shoulder. I only asked the doctor whether there was anything at all she could do for me. I thought I would need a wheelchair, and that then my life would be over. The doctor smiled at me and said: “We can get this situation back under control.”

I had radiation. This made my bones hurt every now and then, but that has passed. 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 again.

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 felt really bad. And also 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. Otherwise, I don’t think I could have dealt with it. 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.

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 is important to me that he knows about it. But because he lives so far away, he cannot help me with everyday things.

It is quite difficult for my brother to deal with my disease. For some reason he cannot handle it when I feel poorly. You cannot see that I’m sick, 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 have retired because I haven’t got the strength anymore to work that much. 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 have retired completely, and work two half-days a week to earn some extra money. That’s great for me. This keeps me in touch with the working world, too.

I am 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 am 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 am 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.

When things calm back down, I would also like to go swimming again, although swimwear is an issue. I need a swimming 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 in a swimming hall, 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 cannot do that yet, I’m not ready yet.

My first question after the surgery was: How much longer will I live? When I got the diagnosis, the first thing I thought was: cancer is deadly. And now I think about death. I don’t find dying as terrible as long suffering. I once went to a seminar on dying, which really helped me. It was actually quite a relief. I am not quite as 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 to be in a lot of pain over months, and to have to suffer. I think that if the Lord is coming for me, He will take me.

After I first got the diagnosis 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 one another: one wanted to do this treatment, the other wanted something else. I wasn’t sure whether they were telling me the truth. 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 cannot be cured anymore, and that I am chronically sick 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 on this earth. I try to make the best of every day and to enjoy it as much as possible.


ACKNOWLEDGEMENT

These real-life stories were gathered during interviews with patients who generously shared their experiences with us. We are very grateful to these interview partners.

All of them have given their permission for these stories to be published here.

The opinions and comments in these stories are the opinions of individuals. They are not necessarily shared by IQWiG and are not intended to serve as recommendations to help people make decisions.

© IQWiG (Institute for Quality and Efficiency in Health Care)