Forum Discussion

Gemma's avatar
Gemma
Member
12 years ago

Looking for support/advice

Hi there my name is Gemma I'm 37 (just!!!) last year I had some genetic testing done and found out I have the BRAC1 gene mutation. Not surprised really as so many of the women in our family have had breast or ovarian cancer. Most recent we're my my mum and now her sister. My mum lost her battle with ovarian cancer but my aunt is still fighting and winning, this is year 5 I think. 

I'm looking for support as I begin this journey, I have some huge decisions to make about when how and who. My family all live in the UK I have some fantastic friends spread around this huge country as we are defence family. However I would like to chat with others who have had similar experiences, perhaps those going through the same things right now, or those who have come out the other side.

i have 2 boys Adam 17 and Harrison 9 we would of liked a 3 rd but life just got in the way somehow, and now it's probably a bit late.

im seeing a specialist in Canberra his name escapes me right now!! He has given me sound " not sugar coated" advice. Though it's all a bit scary and extreme. I'm due for my second MRI/ mammogram and ultra sound next month and if it's all clear I will be looking to go ahead with a double mastectomy. I want a reconstruction at the same time. I don't know that I could handle not having my breasts, and I'm terrified about it all, how I'll react how my relationship will take the strain. I don't mean to sound vain it's more an insecurity than anything else.

where do we find information on surgeons and costs as there is so much out there in google world it's overwhelming and confusing. How do we know if we have a good surgeon etc......

 

right ok ok I think I should leave it there for tonight as I'm bordering on essay territory now.

thanks for any small bits of advice and I'm ever grateful for all support x Gemma 

7 Replies

  • Gemma's avatar
    Gemma
    Member
    12 years ago

    Wow I hope it all goes well. I' have my first consult with a surgeon on the 10th of June.  I have no idea what I'm going to opt for yet. I know what I don't want though if that makes sense.

    i would very much appreciate staying in touch and knowing how you are going. I'm becoming more and more anxious about the unknown.

     

    thankyou for your response it's very much appreciated.

    Gemma

  • Aviarose's avatar
    Aviarose
    Member
    12 years ago
    Hi Gemma, What a predicament we can find ourselves in! Hope you find the support you need here as I have. Certainly worth joining the reconstruction group mentioned. As for me I am 6 weeks out from a double skin sparing mastectomy and DIEP reconstruction and I am happy to answer questions. Best of everything Julie
  • Aviarose's avatar
    Aviarose
    Member
    12 years ago
    Hi Gemma, What a predicament we can find ourselves in! Hope you find the support you need here as I have. Certainly worth joining the reconstruction group mentioned. As for me I am 6 weeks out from a double skin sparing mastectomy and DIEP reconstruction and I am happy to answer questions. Best of everything Julie
  • Gemma's avatar
    Gemma
    Member
    12 years ago

    Wow again thanks Sam 

     

    i didnt expect to have this kind of response when i finally got the courage to write down my story and put it out there. I was so concerned with what others would think if i was being daft or whatever.

    I will certainly look at the facebook group. 

    Thank you for sharing your story with me. I have been chtting to friends who respond with "whats to think about get rid of them" but honestly if i had cancer then of course there would be no thought its just difficult for me to respond like that. I am slowly finding out that my response is actually quite common. So again thanks this has been so good for me. Thanks for the advice.

    I hope you are well 

    A grateful Gemma x

  • Gemma's avatar
    Gemma
    Member
    12 years ago

    Thanks  Louise

    phew thats a relief knowing im not odd or vain. Also thank you so much for the response i wasnt sure if i would get any where. it was a tad daunting putting myself out there. I will most certainly look at the website and would very much appreciate some contacts.

     

    Thank you Gemma 

  • SamzRusty's avatar
    SamzRusty
    Member
    12 years ago

    I'm 41 & BRCA1 too, but I didn't find out until after I was half way through chemo with Triple Negative BC. I believe it would b a very hard decision to make. After having cancer, I made the decisions very easily!

    10 weeks ago I had a bilateral mastectomy immediate with lat dorsi reconstruction. 2 weeks before that I had a hysterectomy & oophorectomy. The surgery was scarey, but cancer is worse. 

    Join the reconstruction group that Louie mentioned and put out feelers for women in Canberra that my have some tips on Surgeons. Don't always settle for the 1st 1 you see either, I saw 3 before I made up my mind. A good PS will show you photos and not get frustrated with question after question. Mine even gave me phone numbers of other ladies that I could get in contact with & chat to about the surgery. 

    If you're on Facebook, join the National Pink Hope page. You'll get connected very quickly with other BRCA women that are in the same pre cancer boat. Their website has lots of information too.

    https://www.facebook.com/groups/643921968963173/

    All the best, Sam xoxoxo

     

  • SamzRusty's avatar
    SamzRusty
    Member
    12 years ago

    I'm 41 & BRCA1 too, but I didn't find out until after I was half way through chemo with Triple Negative BC. I believe it would b a very hard decision to make. After having cancer, I made the decisions very easily!

    10 weeks ago I had a bilateral mastectomy immediate with lat dorsi reconstruction. 2 weeks before that I had a hysterectomy & oophorectomy. The surgery was scarey, but cancer is worse. 

    Join the reconstruction group that Louie mentioned and put out feelers for women in Canberra that my have some tips on Surgeons. Don't always settle for the 1st 1 you see either, I saw 3 before I made up my mind. A good PS will show you photos and not get frustrated with question after question. Mine even gave me phone numbers of other ladies that I could get in contact with & chat to about the surgery. 

    If you're on Facebook, join the National Pink Hope page. You'll get connected very quickly with other BRCA women that are in the same pre cancer boat. Their website has lots of information too.

    https://www.facebook.com/groups/643921968963173/

    All the best, Sam xoxoxo