Based in Germany with breast cancer

2 replies
40 subscribers
696 views

Hallo, Not sure if it is OK to ask questions of a nurse. I was born in the UK but have not lived there for some 20 years. I have an NHS card but am registered in Germany with AOK. I have breast cancer which has spread under my arm, creating a tumour some 20cm wide by 12cm deep - feels like having a book under your arm. The tumour has taken to weeping pus whcih means I have to stick dressings on it. The pus smells awful. In the discussion group someone suggested I contact a Macmillan nurse to ask questions. By the way if you are wondering why I don't go to my Hausarzt..... they just preach put up and shut up! I take Abemaciclib 50mg twice a day and have blood tests every two weeks which sometimes result in the readings being negative and the pills being stopped for an interval. During this interval the tumour happily grows again........ So, my questions:

1. Someone has suggested charcol dressings on the discussion forum but they are so expensive here 110 Euro for 10! Can't afford that. Can I use charcol powder to damped the smell?

2. What causes the smell and the eiter for that matter. I thought perhaps it was dying cancer cells thanks to the pills but someone suggested it might be good cells being killed by the cancer or even an infection. What do you think?

3. Abemaciclib seems to upset my liver, which is why they tell me to stop taking the tablets for a while.

Are there alternatives?

What does "affects you liver" mean? They ask for Kreatinin,GOT,GPT,Y-GT,DIff.BB - means nothing to me I'm afraid. I do have a scan dating from end July which apparently is OK to take the tablets. Could send it to you. Just wish I could read and understand it!

4. I get very weary, especially when I have to go shopping and haul heavy bags. Is this normal? Nor do I sleep very well, again is this normal? If so I guess it is put up and shut up.

Thanks for reading this and for any suggestions you might make. I realise it is tricky because I am in another country but information would help a lot.

Cheers Brabant

Kirsty-Macmillan over 2 years ago

Hi Brabant,

I’m Kirsty one of the cancer information nurses on the Macmillan support line.

Thanks for getting in touch. I can see that you have joined one of our support forum’s online and hope you have felt welcomed and supported there.

As a UK charity, it is difficult for us to reply in detail to questions about people with cancer who live outside the United Kingdom. This is because there are differences in health services and care in other countries. You can read about the UK standard treatment for your cancer here on our website.

Living with an ulcerating cancer wound is difficult and distressing, and I understand your concern about smell and how best to dress this area. Hopefully your wound is being regularly assessed and the appropriate wound care suggested. Your nurse will continue to support you with this and may suggest dressings with charcoal to filter any smell. Other dressings containing either honey or silver can also be used to help control any bacteria, which may then help with smell too.

If the nurse is concerned about infection, antibiotics may be suggested. Can I encourage you to have another chat to your nurse about your wound, to help you understand their assessment and wound care decisions.

With regards to an alternative to your cancer treatment, Abemaciclib, you will need to discuss this with your consultant. As previously mentioned, I am unable to give treatment advice to someone living outside the UK. Both tiredness/fatigue and liver changes are listed as being common side effects. That might explain why you are feeling more tired than usual and the reason for the careful monitoring of bloods.

Fatigue is often linked to cancer treatment but is also caused by cancer itself. There are suggestions in the link to coping with fatigue that I hope you find helpful.

You can read more about liver changes here. Again, please ask your cancer team to explain your blood results to you, so you can keep track of them and understand why a pause in treatment may be needed.

Your cancer team are also the only health professionals able to comment on your scan result. They may be comparing it to a previous one and will be monitoring your response to cancer treatment. Why not let them know you would like to go through the results again if you are unsure what they mean.

I appreciate that it might be frustrating being asked to go back to your team for more information and support. Especially as you have hinted at not feeling heard by them.

Perhaps take a family member or friend with you to your next appointment. Prepare questions to ask your healthcare team in advance and allow them to support you in finding answers and more information.

Best wishes,

Kirsty, Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Ref/KA

Brabant over 2 years ago in reply to Kirsty-Macmillan

Thanks for the answers. I don't have a "cancer team" or a "nurse"; here you just get on with it! I have a doctor who reads the blood reports and decides what to do. Explanations is not really a German thing! That's it here. Not to worry, in the memorable words of Winston Churchill KBO

Cheers Brabant

Disclaimer

Based in Germany with breast cancer