HELLO FROM OXFORD

[Verity]

I was diagnosed with LFS about 4 yrs ago following my mother being tested. She was tested because of the enormous amount of primary cancers she was getting. She also has LFS and sadly is now terminally ill with breast and lung cancer. However, her story has been truly remarkable with many unexplained ‘healings’ which the medical proffession have been unable to explain. Without these miracles she would have been dead at least 5 yrs ago. My brother also was diagnosed with cancer and when tested was found to have LFS. Unfortunately his soft tissue sarcoma was too advanced and he died 6 weeks later having just turned 38.

However, I am here to give my history…..up to date I am still cancer free!!!!! I have many medical and screeening reviews to try and catch any cancer in its tracks including breast MRI, Skin Assessments, endoscopies, colonoscopies, bronchoscopies, and full blood counts whenever my blood is taken. All of these help to give me peace of mind but the MAIN thing is that I have a LOW TOLERANCE to visiting my GP.

I have 4 children, and unfortunately 18 months ago my 5 yr old son was diagnosed with an Oribital Rhabdomysarcoma. He received chemotherapy and PROTON THERAPY – we had to go to the USA for this treatment which fortunately the NHS paid for. IT is hoped that the proton therapy will have exposed less of his head to radiation, so hopefully reducing the risk of future cancers related to the radiation. Thankfully he is currently in remission. We have 3 monthly MRI, ches xray and abdominal ultrasounds as part of his current survelliance.

My other 3 children are all treated as if they have the gene although we have made the decision not to test them until they are old enough to make that decision for themselves. They recieve annual physical examination with their Oncologist and abdominal ultrasounds annually. I have spoken to my genetics team and oncologist about this recent study which indicates further surveillance for children (and adults) but because it is so new, not even my ‘experts’ at the Royal Marsden are prepared to back it fully. My job is to keep fighting for my children to by properly cared for by the NHS and FIGHT I will do.

I have found that since having LFS I am FOREVER fighting for good care. I quickly learnt that I often know more about LFS than the so called experts. It can be a lonely Road and I am just grateful that his UK site now exists. THank you Pan

[PanP]

Hi Verity. Thanks for posting your story.

Who was it that came up with the idea of having proton therapy for your son? George had radiotherapy for his rhabdomyosarcoma and that was almost certainly the cause of his basal cell carcinoma 11 years later. We also think it might have been a cause of the osteosarcoma that he had as well, but as you know you can never be sure of these things. It’s great that you managed to get it done on the NHS too.

And it sounds like you’ve got a very active surveillance program going on too – this is a big topic and I know that other people on this forum are concerned about getting more than just a ‘wait and see’ approach from their doctors. Did you genetics team suggest it?

[pennysophia]

Hi Verity,

Thank you for sharing your story. I’m so sorry to hear about your brother, your mother and your son. I am so glad to hear you are cancer free so far and so vigilant with your health and the health of your children. It sounds like you are a warrior like my Uncle Pan! Having lost six relatives to the disease and all of them having genetic mutations, I know that it is a constant battle to receive good care and vital information and I applaud you for fighting so hard.

I hope the trust and my Uncle Pan can help you in any way we can and I really do wish the best for you and your family x

[Verity]

Thank you pennysophia. I am already VERY pleased that your uncle decided to set this support forum up. Once the news gets around about it, hopefully we will get a few more members (not that we really want that, but you know what I mean).

[Verity]

Pan, would it be worth me starting a new discussion to mention about Proton Therapy and to talk about my surveillance program?

[PanP]

Yes, definitely. Alternatives to radiotherapy are worth knowing about!

[Author]

Posts