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sue480's avatar
sue480
Member
14 years ago

Strong family history

Hi all,

I am writing this blog as I feel I need to talk to people who are experiencing what I am.

My eldest sister 53 was diagnosed with invasive ductal carcinoma in April 2011, my Mum 78 was diagnosed in June 2011 and my younger sister was diagnosed in late Feb 2012 also with idc.

All have had their cancers removed, the older sisters had spread to the lymph nodes and they were removed so chemo and radiation for her. Mum had radiation and my younger sister is due to start radiation.

My doctor is hesitant to send me for genetic testing. I have had a mammogram and ultrasound and am clear but I am terrified for myself and now my children.

At times is feel selfish for thinking about myself when they are going through so much and we do not live close as I am in Tasmania and they are in Victoria. All my support for them is via phone which is very hard.

4 Replies

  • Shazinoz's avatar
    Shazinoz
    Member
    14 years ago

    I am awaiting an appointment with the genetics clinic to be tested. I have breast cancer (and many other cancers) in both sides of my family & my dad has/had prostate cancer (related to BRACA genes my oncologist says, as is ovarian cancer), and was diagnosed with IDC 3 days before christmas (22/12/11) at 40 yrs old - (ER+, PR-, HER2+, LVI+, 1 of 2 sentinel nodes +, mastectomy 3/2/12, chemo began 2/4/12).

    sure knowing if i have it is not as importantant tme (already have breast cancer), but it would mean i would have to have regular ovarian testing etc, but i have a sister who is 15 months younger & she has 3 daughters, & my brother has 2 daughters.

    i have already made the decision with my  other breast removed for preventative reasons.

    i had a reconstruction with silicone implant after my mastectomy (nipple sparing & partial skin sparing) & will do the same with the other one. i have to finish chemo before mastectomy 2 can go ahead.

    your thoughts and worries are 100% NORMAL of course you are worried about your own health & the health of your children & any children they have etc. that really is normal, you ARE NOT SELFISH, you  are worried about the implications this has on you & yourkids and there is NOTHING more normal than that.

  • LizzyB's avatar
    LizzyB
    Member
    14 years ago

    Hi Sue

    Last week I had some genetic testing for the BRCA 1 and 2 gene.  My mother had a different type of breast cancer to me 7 years ago and was tested, but didn't have the gene.THey didn't test me as their theory was that if mum didn't have it, I wouldn't either.  My dad's sister died of BC at 29. As I was only 40 when diagnosed so now they think that there maybe is a connection as my family tree is peppered with all different types of cancer on both sides.  So now they are testing to see if it is from my Dad's side.  I read in the paper last week that Melbourne researchers have apparently found a new breast cancer gene called XRCC2.  (of course it was after my genetics appointment, but I will still enquire about it when they give me my results).  There is so much that they are learning about genetic testing everyday.  So much so - they said that if I do test positive to the BRAC1 or BRAC2 gene they will retest my mum as there is a new element to the testing that they now do and didn't do 6 years ago.   Don't feel selfish for wanting to look after your health and make informed decisions.  I read a quote recently that kinda summarises that - "Never base your life decisions on advice from people who don't have to deal with the results" Good luck and keep asking questions x Liz

  • sue480's avatar
    sue480
    Member
    14 years ago

    thank you your words made me feel better both sisters are doing o and are very positive in their outlook

  • Allicat's avatar
    Allicat
    Member
    14 years ago

    Hi Sue

    I don't blame you for feeling scared. That is a lot of cancer in a short time. My eldest sister was diagnosed with breast cancer 3 months after I was so we had the genetic testing. We were told at Peter Mac that it was the youngest effected person who should have the testing so I would expect they would want to test your younger sister rather than you. I was tested on behalf of our family. Maybe different places have different ideas on that.

    Although I tested negative for BRCA1 & BRCA2 there is still a lot they don't know. There could be still some family link or it could be a coincidence that we both got breast cancer. Our other sisters have all had mammograms and ultrasounds as well.

    Don't feel selfish about being concerned about yourself and your children. It's only logical and natural. One of my sisters said she felt guilty about not having cancer when we did. That's understandable but also unnecessary. It's not anyone fault about who got cancer and who didn't. 

    When I was diagnosed my eldest sister said to me that she wished she had got it instead of me. I found that an annoying thing & thought (but didn't say!) that I wished she had got it instead of me as well. I still feel a bit guilty about that thought. Of course, it turned out she had cancer in addition to me so that was even worse. 

    I'm sure your family appreciate whatever support you can give them, over the phone is still support. 

    Best Wishes