Becoming less green & more wise

Hi, all you lovely ladies, I knew nothing about oc when I was first diagnose last March only that my mother, aunty & cousIn all died of this. I went a long with everything the doctors said never questioning anything. It was only when I found this site a few weeks ago that I realised I can be in control of my care. The information on here is amazing.

I Just read about one very brave lady & all the things shes going through, she mention immunotherapy. I have not heard this before so I have looked it up & now I am going to ask my doctors about this. Also I have been told I have a high chance of having a faulty gene after reading here about gene therapy I am going to ask about that as well.

This site has given me a lift I really look forward to going on it. Thank you for being there. Love Cindyxx

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13 Replies

  • Hi Cindy, welcome to this friendly and helpful site. If you need a hug we are here, if you need to rant or share your concerns, then we are here, ask a question, tell us about your day..well, yes we are here.

    This is a fab group with a lot of fab women and some men too.

    You have a strong family history of OC and must already have been through a lot with your mum, aunt and cousin, what a shame the doctors didn't raise this with you before but so much is still not shared or known by all our medical profession.

    Yes ask your docs about the points you've raised here and remember they may be the doctors but you live with this and you are within your rights to ask and get yourself listened to.

    Take care

    Clare x

  • Hi Clare, thank you for your reply. I will be asking questions from now on.

    I started feeling unwell mid 2011 & kept mentioning about my family history but my doctors never suggested checking my overies. At that time I thought doctors knew more than I did, how wrong was I. Also have two other cousins that had breast cancer in their early thirties thank god they are now well & healthy.

    Take care big hugs Cindyxx

  • Hello Cindy,

    Welcome to our site. As Clare says, we're here if you have a question, a concern or even a rant, we are all here to help each other.

    If you are unclear about anything about your care or if you wonder why you're not being offered a particular chemo or op, just ask. Some women here, have found trials for which they are suitable but which your particular oncologist was unaware. Do as much research on here and elsewhere (always bearing in mind that statistics are just that, statistics and are out of date by the time you read them too).

    Also, I'd like to suggest you restrict your post to our community. This way, you're likely to get more responses as many do not want their responses all over the internet. I'm copying a message here from Sunfleury a few months ago, which explains in good detail.

    "Please be aware that when yiu post there are two options at the bottom of the page when you write it...

    Below the question, 'who can see my post?' There are two options, the automatic selection is 'everyone' which means it can be shared by others to the www & social media. There will be a FB & Twitter sign alongside the post when published. All comments and replies will similarly be visible.

    The second option is to click onto 'Only followers in my community (hidden post)' if you chose to select this a padlock will show on your post.

    There will be many here who for the best of reasons wish to keep their thoughts, fears and experiences a little private. Many will choose not to reply to 'open' posts, limit the extent of their comments or may gently suggest that the post is restricted....

    At any point you can edit a post, question or comment by using the little downward facing arrow and so can change where the post is seen.

    Hope this helps, Sx

    Ps you should be able to see the padlock!"

    All the best, Helen.

  • Hi Helen I didn't realise that I thought only the members of this site could see my post. I will more careful from now on. Thank you for your reply take care Cindyxx

  • I asked my doc re immunotherapy for ovarian cancer, but it has not been approved yet. However, he says it has been successfully used in other cancers since the 90's.

    Hang in there girls, hopefully it's only a matter of time.

  • Hi Sherrym thank u for your reply it's on my list of things to ask at my next appointment. I will hang in there. Take care Cindyxx

  • Dear Cindy, what a number of losses for you and your family. This site gave me lots of help too. The ladies here made me more pushy when it came for asking for certain things ( not just accepting stuff). So I had a port fitted rather than a picc line . It also stopped me hiding away. So particularly thanks to Trix I went to some parties over the summer. I thought I'd feel too rubbish and didn't want people to see me. But going so lifted my mood that it meant I started walking about more during the day too.

    gene testing is important and your doctor should advise you. my oncologist told me that it guides them to different treatment options if the cancer comes back. Emotionally it is complex, but it offers me an explanation as to why I have cancer.

    Good luck.

    T. X

  • Hi T I am gathering so much good advice thanks. I like the word pushy something I need to be. Take care Cindyxx

  • Welcome to the site. It's a lovely place to come for a cry or to ask questions and great for the understanding when doctor babble is too much.

    My GP suggested immunotherapy and I took part in a NHS research trial.

    Ask away as and when and good luck


  • Hello. Good for you! We should question what we are told and I find most doctors and the nurses seem to like it. I've worked in the health service so they seem to expect it anyway. I once told a nurse I thought I'd been awkward asking so many questions and she said 'good for you, you need to be'. Medical staff these days seem to like explaining things, not like the old days when what doctor said was law. Good luck.

  • Cindy

    Sending you a virtual hug, and know we are always here for you.

    Ellsey xx

  • Hii Ellsey that really sweet of you big hugs back. Cindyxx

  • Hi Cindy

    I have lost replies to you twice this evening so I am going to make my third attempt tomorrow as its now 1 a.m and I am getting bleary eyed ! Welcome to this lovely site of friendly women who are a fountain of knowledge and they do say knowledge is power ! Now I am going to say goodnight before my ipad is nasty to me again and throws me out !


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