Hello from Germany

[Sonja]

Hi all,
My name is Sonja, I am from germany and I was diagnosed with LFS in February this year. I already posted in the breast surgery topic a few month ago, but thought I would probably be a good idea to share my story in this thread as well 😉

There are so less people with LFS and it is good to read about others…just feels less alone.

I was raised up in a small village in middle germany and since I was 12 years, my life was as perfect as it could be. A caring family, lots of friends, lots of hobbies, no problems at school. Than cancer stepped into my life. Unpredictable, long time undiscovered.

The next 2 years I was literally fighting for my life…fighting against a Osteosarcoma in my left bowl with the size of a football. I did chemotherapy and surgeries. After the biggest surgery, the tumour was finally removed and (thanks to God) my leg was still there (doctors were not sure if they would need to perform an amputation, the decision was made during the surgery). But I am disabled since this day, with a leg 12cm shorter than the healthy one.
Only 4 month after finishing the chemo, the cancer was back in my lungs and the fight started again. Doctor’s told my parents that I won’t surveive it. My mum was sitting next to my hospital bed days and nights. She just cared about me, forgot to care about herself and ignored that her own healthy was in danger. She went to doctors much too late and finally died of a lung embolism after several weeks of artifical coma. During these days, we have been in the same hospital. I was having my lung surgeries and chemo, she fighted for her life but had not enough power left…too much of it was absorbed by caring about her sick daughter. This has been the darkest day of my entire life.

After finishing the threatments against the metastases in my lungs, I stayed cancer-free, despite of all statistics and assumptions from my doctors. 10 years passed by and the cancer was almost forgotten..by me…my family…my friends. I went back to school, started studying, graduated at university, started working…like every other teenager / young girl around me.

I think you already know what happened next. Otherwise I would not been writing here, right?

At the age of 24, I felt a lump in my breast by accident while having a shower. Nobody really thought that it would be again cancer. I insisted on having a tissue-sample. And my feeling was right, it was a high grade mamma carcinoma. And the fight continued…. chemo therapy, radiation, surgery, anti hormones, antibodies…full package. I asked myself why there was again cancer in my life. I was too young for a typical breast cancer candidate. None of the characteristics matched.. kind of weird coincidence…???
In December 2011, 4 years after the cancer in my right breast, I was diagnosed with a second breast cancer. This time the left breast was effected. Still nobody mentioned LFS to me….but I was sure something MUST be wrong with my genes. But – nobody in my entire family suffered / suffers from cancer (knock on wood).
After having a cyste on my ovary in January 2012 with a unclear outcome of the pathologic examination, one of my doctors mentioned “p53” the first time. And suddently everything went very quickly. The blood test and the result, only 6 days later: Damaged TP53 gene. Most likely a de nuovo mutation. It was a shock for my whole family.

In February, I had the standard LFS checks for the first time (full body scan, brain MRI, skin check, ultrasound abdomes, colon and gastroscopy). Thanks to God they did not find another cancer.

In the meantime, my father and my sisters have been tested negative. We are very gradeful!

It is still new to me to live with LFS and I haven’t figured out yet what it exactly means for my life, my relation, my family. I have good days and bad days.

Thanks for listening….
Sonja

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[PanP]

Hi Sonja. What a terrible story! If it was a film people wouldnt believe things could be so terrible. Now that you know you have LFS is there much information or support in Germany?

[Sonja]

Hi Pan,
I am having a good health insurance and so I am lucky that all the scans and checks are fully paid by my insurance – with one exception, the full body PET-CT. Insurance is not paying the PET part of it, which is around 1.200 Euro :-(. But we are still in negotiation…
I would say, I have a team of very good doctors around me, none of them experienced with LFS but all of them very experienced with cancer patients…and this is fine with me. LFS is too rare, you cannot ask for more, can you?

Other than this.. my oncologist basically did some research to find out what it actually means, having a LFS patient. I am having the recommended check-ups according to the Toronto protocol and even more regular ultrasounds of the abdomes. The last just because my oncologist is very keen on this, he is a internal specialist.. B).

I was seeing a genetic counselor only one time. As I am the only member of my family with LFS, there are no family trees to analyze. And overall, he made me more scared than I already was…..no point in seeing him again :sick: , not before they have a SOLUTION…any kind of treatment for this!

There is no forum in Germany for LFS patients. This is why I am bothering you with my bad English :-).

Regards,
Sonja

[PanP]

Believe me, your English is better than my German!

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