Leiden Factor V

Hi I’m a little nervous of blogs and messaging but I have just come home from hospital after my mastectomy and DIEP flap reconstruction and personally I found this blog really helpful as a source of advice and information before I went in so firstly I need to thank you all for that - THANK YOU THANK YOU! and also I need to ask for some help for my friend who also has breast cancer.  

She has had a lumpectomy and is due to start radiotherapy in the next few weeks and then hormone treatment.   But she has the Leiden Factor V gene, one gene not both but this means tamoxifen is ruled out as the risk of blood clotting is very high. The oncologist has suggested a hormone treatment (pills) to bring on a menopause by shutting down the ovaries and then to use a post menopausal hormone drug (equivalent to the premenopausal tamoxifen).  She is trying to research and gather as much information as possible so she is as prepared as she can be and has time to think through what her choices are.  The same as all of us.  But there is very little information avaiable, please has anyone out there had any experience or knowledge of the Leiden Factor V gene and undergone hormone cancer treatment and does anyone know of any details as to what the alternatives are and risks versus benefits or where is the best place to go to try and unearth that information.

Thank you all so very much xx

Hi Lise and welcome to the BCC forums

Along with the support you will soon find here from your fellow users please feel free to call our helpliners to talk your queries through, I am sure they will be able to guide you further regarding the information you are looking for
Helpline is open weekdays 9-5 and Sat 10-2 on 0808 800 6000

Take care
Lucy BCC

Hi Lise, only just joined the forum and seen your post.  I am newly diagnosed with Factor V with a hormone responsive cancer.  Hormone treatment is being talked about as part of my treatment, not Tamoxifen and just radiotherapy as I might run into problems with chemotherapy.  How are you and your friend doing, all the best to you but wanted to say I am part of the same not widely known Factor V club in case that helps.