Another one diagnosed with BRCA2+ with 26

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CatarineTempest
CatarineTempest Member Posts: 5
edited January 2017 in Genetic Testing

Hi, I'm new around here, I'm from Brazil and will share my story (and questions) with you. I'm sorry for my poor English!

My mom was diagnosed with triple negative breast cancer by the age of 40. She had chemoterapy, unilateral total mastectomy and radiation. The whole process lasted about a year, we were very optimistic and everything went right. After one year of the end of the treatment, she had a brain metastasis. Long story short, she had 3 brain surgeries, lived 3 years when the doctors were giving her 1 year of life.

After her death, I was 26 and had the genetic test. I didn't want to do the test.. but my dad asked me and for the memory of my mom, I did it. And was positive for BRCA2.

My doctor here in Brazil told me that the best for me was to have kids under the age of 30 and think about a prophilatic double mastectomy after I had a family. By that time, I should do an annual MRI, anual mammogram, 6 month ultrasound and monthly self exam.

I never had an urge to have kids. I married with 29 years and now I really want kids... but my husband and I started trying to conceive this year (I'm 30 now) and I thought I would have conceived by the begining of next year (2017). But still, no baby in my belly.

The fact that my mom had cancer at 40's, I still have no babies and I'm on my 30 is frightening me. And I was thinking about doing the prophilatic double mastectomy before getting pregnant, but I think about the breastfeeding subject, not carrying the baby when she/he is heavy and all that topics... and get lost.

Can someone around help me?


Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Hi Catarine and welcome to Breastcancer.org.

    We're so sorry to hear about your mom, and your positive BRCA test results. We know you face some difficult decisions, but we're sure there will be many others stopping by shortly to share their thoughts and experiences.

    We just wanted to let you know we're all here for you!

    --The Mods

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Just bumping this thread to see if anyone has any advice and support for Catarine. Thanks!

    The Mods

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2016

    Hi CatarineTempest:

    I am sorry you are faced with such difficult decisions. Is your doctor a professional with training in genetic / familial risk assessment? If not, you may find additional consultation with a "Genetic Counselor" or other professional with training in medical genetics to be of value.

    Many find the FORCE website to be helpful also:

    http://www.facingourrisk.org/index.php

    Best,

    BarredOwl

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2016

    Hi Catarine - I'm so sorry for the loss of your mother, and for your positive genetic testing. Knowledge is power, so it is better to know and be able to do something about it. I agree wholeheartedly with BarredOwl's suggestion of visiting the FORCE website, and also finding a professional genetic counselor. I'm not sure how available they are in Brazil, but you might be able to get a remote opinion by a facility like Johns Hopkins, in Baltimore, Maryland in the US. I recently requested information, and discovered that they can have a doctor look at all your information and speak to you over the phone or over the computer. The cost starts at around $550.

    Take things a step at a time. There is plenty of time for a baby. Gentle hug.


  • CatarineTempest
    CatarineTempest Member Posts: 5
    edited September 2016

    Thank you very much BarredOwl and farmerlucy! I didn't know FORCE website and it has a lot of valuable informations!

    Lots of love to you <3

  • KBeee
    KBeee Member Posts: 5,109
    edited September 2016

    There is only a limit on carrying things for 6 weeks after a bilateral mastectomy. I am a firefighter and was back to work within 3 months of my mastectomy, hauling fire hose and other heavy equipment. You'll still be able to hold your baby.

    I do have 2 friends (one a childhood friend and one a local friend) who had babies after having mastectomies. I know it may be frustrating not being able to breastfeed, but the plus is being able to be their healthy mom. There is formula, and there are breast milk banks.

  • CatarineTempest
    CatarineTempest Member Posts: 5
    edited September 2016

    Thank you for sharing Kbee. 

    It's good to know that you have a "normal life" after your mastectomy. Congratulations for being such a brave woman.

    What kind of mastectomy did you have?

  • LisaPinkRibbon
    LisaPinkRibbon Member Posts: 6
    edited November 2016

    Hi Catarine,

    First of all, I am also sorry to hear about your mom and your diagnosis. I can feel with you regarding both, however I will hopefully manage to convince you that the second "problem" isn't so bad after all.

    I will tell you a little about my luckily positive history so far.

    All started in 2006 when my 30-year-old sister (8 years older than me) suffered from breast cancer. Her young age, 2 sick cousins, 1 diseased aunt gave reason to think that we might have inherited the BRCA gene. Luckily, my sister had surgery (breast-sparing at first), radiotherapy and chemo and finally was cancer free.

    Her whole experience and knowing more about the high risk of also falling sick at a very young age I decided to have a look at my options.

    1. Find out whether I am positive, and if yes, think about next steps.

    2. Don't get tested and just wait and fear!

    Actually, it didn't take me a minute to decide what I wanted, and I was only 26 years old, just ending my university career. I wanted to know about my fate. How many people get the chance to find out about a live-threatening condition BEFORE anything happens? So I got tested, was positive and said to my doctor: " So what can I do about this?" His answer was prophylactic mastectomy. A little shocking at first but then I thought .. 90% risk of getting sick in the next couple of years and go through the same as my sister, or have this done, get beautiful breasts that will never hang :-), and reduce my risk to close to 0. My choice was made fast. Half a year later, after my university diploma I had DM with immediate reconstruction with silicon (2 reasons for that:1. I was too slim for using my own fat, 2: I didn't want any more than the two scares below my breasts.

    I won't go into detail about the whole surgery, but I just tell you I NEVER regret being tested or taking the step of mastectomy. I know opinions differ, about whether or not it is necessary to remove (still) healthy tissue, but for me this was the only logic consequence.

    After seeing the beautiful result, my sister soon decided to have the same thing done too and has been healthy for the past 12 years now, so ...

    According to my doctors the risk of ovary cancer increses from 40 years with BRCA gene, which is why they told me to have kids before that, since ovaries should also be removed later.

    The other thing is that I am now 34 and just pregnant (:-) - very fresh, so shouldn't really be writing about this) and of course I am now also thinking about things like breast feeding (or NOT breast feeding, etc). I currently hope this is the only "negative" effect the DM had on this. No problem conceiving or anything ;-).

    I hope this helps and please feel free to ask anything you would like to know about my experience.

    LOVELIFE

  • CatarineTempest
    CatarineTempest Member Posts: 5
    edited November 2016

    Thank you very much LisaPinkRibbon for sharing! It helped me a lot!

    I talked to my husband, we decided to try to conceive until january. If I don't get pregnanty, we'll do the Prophylatic Mastectomy.

    By these days I've been doing all my exams (I also have hypothyriodism) and discovered I have low progesterone on luteal phase. My doctor says she wants to wait a little longer, till my hypothyriodism is regular again to see if we'll have to take medication on the luteal phase.

    Everyday is being a new discovery and I've been crying a lot not knowing what to do. Guess I'll keep the plan till january and then see what God has for me!

    Thank you all, you're helping me a lot in these though times!

  • LisaPinkRibbon
    LisaPinkRibbon Member Posts: 6
    edited January 2017

    hi,

    Glad I could help a bit. Any news on this front? All the best, lisa

  • CatarineTempest
    CatarineTempest Member Posts: 5
    edited January 2017

    Hi Lisa!

    Nothing new to tell yet... My hypothyriodism doctor raised my medication again and I decided to stop thinking about the PM until March because my husband and I are going to realize a dream: go to Disney World!  Until our vacation we are going to try to get pregnant! After that, if nothing happens... I hope God put some answer in my heart because I'm very lost.

    Also I started taking "Vitex Agnus Castus" pills... to help on my low progesterone on the luteal phase.

    Thanks for asking! After march I'll come share some news with you! <3

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