Hello from Portugal!!

[MissMag]

Hello everyone!
In December last year I was tested positive for Li-Fraumeni Syndrome. Most of my father’s family died of cancer and my father is a survivor of a sarcoma 8 years ago, prostate cancer a few months ago and is currently recovering from another sarcoma on his leg. He had no cancer until she makes almost 50 years and I hope the same happens to me.

My sister and I were tested and only my result was positive. I live in Portugal and here there is not much information, next month I will have an appointment to discuss preventive mastectomy and of course I hope to have surgery soon.

Until then i’m living intensely because I’m not sick, right?

Kisses and hugs xxx

[PanP]

Hi there. Welcome aboard. Like Portugal there’s not much information here in the UK on LFS – but we’re working to change that!

Keep us posted on how things go. If you look on the forum you’ll see a number of members who’ve either had protective mastectomies or are waiting to go….

All the best,

Pan

[Despina]

:side: Hi Welcome to the forum.

I hope you find this very helpful and comforting, we have a few members in a very similar situation as you.

Please let us know how your surgery goes.

Despina

[Karen]

Hi there, I have been away on holiday for a couple of weeks enjoying some warm sunshine so have only just picked up your post. You may have read my post on surgery or screening so know that I am in a similar position to you, like you say we are still in the fortunate position of not being ill to date so it is important to keep this in mind and at least feel lucky we can have some control going forward.

I too have made the decision that I will go ahead with surgery, I think the difficult part was finding a surgeon who appreciates the situation I have and who I feel totally confident with not actually deciding to have the surgery itself. Thanks to the helpline I have previously mentioned on the forum I have now found a surgeon who is based in London who will do the operation and I am now awaiting my appointment to come through. The surgeon I have chosen has done over 200 preventative mastectomies with reconstruction and I have had contact with some of the ladies who he operated on and they have all been very pleased with the results. Initially I was directed to my local hospital but made the decision that I would be willing to travel in order to get the surgeon I wanted. This process took a few months for me to sort but now I am a lot happier in my own mind now everything is underway. My doctor was not initially keen on me going out of the area but did agree to support me on the decision I came to. I met my surgeon by paying for a private consultation first but after finding out the costs involved and the fact that once you get your appointment on the Nhs there would only be a couple of months waiting I decided to stay with the Nhs, after all the surgeon and the hospital I am happy with both. Also I do have private insurance through work but they will not cover the operation because it is preventative only dispite the future risk being extremely high.

Like you mentioned there is very little help available and I have felt let down by some of the people I thought would have been the most knowledgeable about the condition in the medical profession. If I had accepted the answers I was given in the first place and not continued to push for more and had not have contacted the Hereditary Breast Cancer helpline which has been brilliant helping me out in various ways and enabling me to get to the people I needed to be in touch with to get things moving, then I would not be in the positive frame of mind I am now in , and feeling I am now happy to face the future knowing Ihave done everything in my control.

It is also great that Pan has set up this forum so we can all keep in touch with our progress going forward.

Good Luck and keep in touch

Karen xxx

[Author]

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