[Sonja]

Hi Sandra and Karen,

does anyone of you know if this study (Signify?) is only for UK patients or EU/world-wide?

Thanks,
sonja

[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

[Sonja]

Hi Pan,
thanks a lot for preparing the leaflet! It is a great idea and I will definitly use it for my family and friends. I am so tired to explain it again and again and people very often forgot what I have been telling them before..I understand that this happens, but still it is a bit annoying. I think this leaflet will make it a bit easier for them, more concrete, more real. Something which is really THERE and cannot be talked away and forgotten easily.

I am wondering if from a medical point of view it is worth mentioning that the gene defect is located only on one of the DNA string. One of my first questions to the genetic counselor was: ” does this means, I do not have this tumour suppressor protein at all?” He explained, that if this were the case, I would rarely be able to live.
In most cases, damaged cells will be killed in LFS positive patients just like for everyone else, because the healthy DNA string procudes TP53. It is the so-called “second hit” which causes the problem, from what my current understanding is.
I am not sure if this would be too much detail. Just an idea.

Again many many thanks…I am looking forward to the final leaflet 🙂

Sonja

[Sonja]

Hi Karen,

I am a 29 year old LFS positive from Germany (pls apologize language mistakes 😉 ).

I have had my bilateral mastectomy along with reconstruction 3 weeks ago. I am doing very well and feeling happy with my new breasts. They look very natural – even after 6 breast surgeries I had to go through in the last 5 years B) .

My decision was easy to take because I had had breast cancer at the age of 24 (right breast) and now again at the age of 29 (left breast), so I did not had much choice. Nevertheless, I am glad to have them removed and I can not see any big dissadventages…it looks good, I can already do sports like before…The surgery was not so hard, I could leave the hospital after 5 days, I even did not need any painkiller after the first week.

I think it is a very personnel decision and of course my situation was very different from yours. Removing healthy organs sounds kind of crazy. Nevertheless, I am considering to get my ovaries removed as well…having cystes from time to time and always scared that sooner or later a cyste will turn into something really bad. I did chemotherapy several times in my life (sarcoma when I was a child…, breast cancer…), and I do not want to have any of it again :sick: !!!!!

Regarding the drugs. I took Tamoxifen over 4 years, Herceptin over 1 year, Zometa over 3 years and now I am again on Zometa and (new) Femara. Personally, I would prefer a surgery instead of taking drugs over years. On one hand, surgery decreases the risk of any event more then drugs can do (my doctor was speaking about 95 – 98%!!!) and the side effects on life quality are from my personal point of view much higher taking drugs over years instead of having one surgery.

But still…it is a very personal choice and there is no “right or wrong” answer. What you decide, is always the right answer for you.

Wishing you the very best,
Sonja

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