My diagnosis: Changing the approach

If you are puzzled after having read the story of my diagnosis so far, I can assure you that we did not have a clue either after having received this new information. Of course, I started to do some maths and calculated that I had about eight more years to live. I would not reach 50, but I could keep the baby. Could I? We knew we had to see an obstetrician as soon as possible.

(What happened before?)

My husband and I realized that we had made a big mistake during the last weeks. I first found out about my diagnosis in the outpatients’ department of an enormous hospital. We had relied upon them and had not tried to find ad been too paralyzed too call in specialists and talk to them in their medical offices.

People usually dont hear about their cancer in outpatients’ departments fort he first time – or at least, if they do, their general practicioner or a specialist they trust in has sent them there. In my case, it had been an obstetrician who found my blood results suspicious – and she was not in charge of leukemia.

Nobody was in charge of me…and I had to change that quickly. As I wanted obstetricians and hematologists to cooperate, I chose two experts who worked in different departments of an important university hospital and went to their offices. I started a „cancer file“ and made a list of all the concerns I had. Then, I went to see them with my husband. By a coincidence, one of the appointments was in the morning of a beautiful day in May and the next one in the afternoon. A real mayday.

First, we went to see the obstetrician (a new one, because the one I had initially did not work in a hospital.) I had passed the critical 3-months-period at the beginning of a pregnancy. We still had to do the nuchal fold scan. And we had to explain my leukemia to this specialist – at least we had to tell him what we knew at that point of time. The    baby’ s nuchal fold was perfect. Everything was perfect. A completely normal pregnancy except for my diagnosis.

My doctor told me that he had searched for other pregnant women who had been diagnosed with chronic lymphocytic leukemia in a medical database and had only come up with two more.

The story continues here

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