Hi from Michelin

edited November 26 in Welcome & Orientation

God why did this happen? Braca 1! so unfair. Ovarian Cancer stage 3c. It was diagnosed on my sons birthday, he was 9yrs old. I had chemo/surgery/chemo. Its 2 years now cancer free and I live and hope to see my son grow up. The statistics are killers. Only 5 years. I look and hope to see more survival rates. but there is none. Everytime I see a doctor or have to tell sameone I had this dreadful disease I see the torment in their eyes and how sorry they are for me. I dont want sorry I want a cure! I have a daughter who is 20yrs and too scared to tell her about braca1.

Comments

  • Sorry to hear that your genetics showed that you are BRCA1.  It does come as bit of a shock at first.  I am a BRCA2 carrier, I was diagnosed in 2012 and it is now 6 years from my diagnosis.  It is good that you have been cancer free for 2 years, we have to keep on staying positive, as I am sure they will come up with a solution to this disease in the near future.   They are doing a lot of research around the gene mutation and there are different treatments available for BRCA1 and 2 carriers.  I also have a daughter and I have told her about my BRCA2 status.  She is older than your daughter and she has a partner and has 3 children, the youngest being 2 years old.  She has had the genetic test and also has the BRAC2 genetic fault.  I am glad I told her and that she has now had the test, as she is now informed of her choices and can plan to reduce her chances of getting breast and ovarian cancer.  It also means that she is now closely monitored.  There is a face book site called Pink Hope and it may help you to work through and support you in regard to your daughter.  Take care  Helen

  • Hi Michelin,


    I’ve just done the genetics test so I’m still waiting results but yes statistics are frightening and apparently so outdated they say you shouldn’t look at them . They say everyone is different. I have recently joined a Facebook group called ovarian cancer Aussie support and there are women on there that are more than 5 yrs survivors just like Helen. I was diagnosed 5 months ago, well nearly 6 now so I’m a new and terrified and com8ng to end of treatment. I too want a cure and I’m jack of the pity eyes and head tilts as well. I pray and hope Everyday for some kind of cure for us all.


    Take care


    Dionne

  • Sorry that support group is called


    ovarian cancer Australia Aussie support group

  • Thanks All. Its 3 yrs now still scared but trying to live on. Hoping for good research to end this sickness for all of us.

  • Hi Michelin ,


    I am BRCA1 too, my mother and sister are both over five years out from their original diagnosis so there truly is hope for us. The statistics paint a horrible outlook but maybe the BRCA reality doesn’t need to be so grim? I certainly think the good news stories are hard to find, much of the material currently circulated to raise awareness and understanding of ovarian cancer also adds to it’s darkly painted persona. Just once I want to watch a campaign reel or read a recommend blog or listen to a podcast that doesn’t state that this disease is ‘going to kill me’ because yes unfortunately the statistics don’t lie and obviously it is a killer but sorry I refuse to die from this not now, not ten years from now...  My mother’s oncologist (now my own oncologist also) told her that she would be lucky to have 2 years when she was first diagnosed, he now refuses to give ovarian cancer patients a timeline or to label them as terminal! She was 58 when first diagnosed, she will be 76 next year!

  • Hi Michelin


    I'm so sorry to hear that you have gone through this. I hope you are still well. My boyfriend's sister was diagnosed in Sept 2017 with ovarian cancer 3c and she has the BRAC1 gene.  Her mother was diagnosed with uterus cancer in 2013 and in Jume 2o17 it came back and sadly passed away in Nov 2017


    My boyfriend's sister had surgery as well  as chemo. Just a year after having her first treatment it has come back. A small tumour in the abdomen area where they have treated her with radiation. They have since stopped that as they believe it has now spread to the abdomen lining. We are now waiting for CT scan results to find out if this is true. We( family) have done some research and have come across HIPEC surgery.


    Has anyone here had this done? And which hospital and surgeon?


    Thanks in advance


    Lina

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