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Gizmo's avatar
Gizmo
Member
7 years ago

Gene testing - The confusion of knowing what result I wish for

I was diagnosed Aug 2017 at the age of 44 with 2B Grade 3 hormone positive invasive ductal breast cancer with 1 positive node found during lumpectomy surgery which resulted in the lymph nodes to be cleared in that arm.

At the time we had decided for a lumpectomy (I had a choice) and as we were not expecting to find any lymph nodes to be affected and as I lift a lot of boxes and stock we wanted to reduce the amount of possible damage to my arm.

If we had of realised that it was in the nodes I would have had a mastectomy there and then. I don't regret what we decided at the time as we made the decision with the information we had at the time.

I have finished my chemo and radiation treatment and was lucky to get picked in one of the trial drugs which helps to inhibit (slow down) growth of the cancer and in conjunction with tamoxifen am doing really well and am happy with my progress.

I am having my gall bladder out in a couple of weeks and in the same operation they are going to remove my ovaries for me to help reduce the risk.

But here is the thing.

In July I did the gene test as we have had a high number of family members that have come out of the woodwork since I have been diagnosed that have had breast cancer and prostate cancer. If it comes back positive than with no issues I am happy to go in and have a full mastectomy done. Yes I will be scared but I am a very practical person and just want to make certain that I am around for a long time. I know it doesn't remove all of the risk but its something I can do to help reduce it.

But want happens when it comes back negative!! This is the part of why I cant talk to my family

I want the test to come back positive but feel wrong for wanting that.

If it comes back positive I know what I have to deal and we have a plan but if it comes back negative we don't know why it is happening in our family and will always have that unknown playing in my head. What triggered it in me? What can I do to prevent it coming back? Why us? You get the picture

The say the end of Sept give or take a couple of weeks for the results to come back. 

Am I crazy for thinking/feeling this way? And if it does come back negative any ideas on the best way to deal with it

Appreciate everyone's thoughts

xxx



  

 




7 Replies

  • primek's avatar
    primek
    Member
    7 years ago
    I have a strong family history on both sides of family.
    On my Dads side is the BRAC1 gene and 3 of his sisters and at least 2 cousins have died because of it as well as my grandmother. ..likely...but she  refused treatment /investigation so was just treated for pain.  All these in Scotland. I was tested for this gene and was delighted to fibd out I didn't have it.

    My half sister though had breast cancer and so has her daughter. They have tested against all known genes and have been unable to find a known gene thus far.

    So at this time we are considered just an unlucky 1 in 8. Since I am 1 sister of 7 I guess it's not surprising really. However they keep looking and all my sister's have annual mammograms.

    I had a bilateral mastectomy as we all thought I had the gene. My breasts were very dense and my tumor was invisible on the mammogram 5 weeks before the palpable lump. I wanted immediate reconstruction and my surgeon recommended it and I agreed  (having 1 Aunt die after having bilateral breast cancer but different times ).

    I was all set for referral to next surgeon to he rid of girly bits but not having the typical gene for ovarian cancer I have not proceeded with this surgery. A relief not to need it but something I would have done if my genes were identified.   

    So I had the bilateral mastectomy and have no known gene. Do I regret this. Absolutely not. Would I do it again given same choices...yes. Do I miss my breasts...yes I do...but I've adapted. The surgery has enabled me to stop worrying about a new primary hidden cancer or recurrence in similar area. Not 100% of course but a dramatic reduction. That peace of mind was worth it. 
  • kezmusc's avatar
    kezmusc
    Member
    7 years ago
    Hi @Gizmo,

    Confusing yes.  I had family history but great grandmother and a couple of her sisters, so way back.  No other cancer anywhere. According to what I was told at the time a very high percentage of  people diagnosed with BC  have no family history at all and only a small percentage with the inherited gene that actually get BC.

    I had the lumpectomy and auxillary clearance as I originally found it in the lymph nodes.

    I opted out of the gene test as I really didn't want to spend my life knowing I had inherited a dodgy gene and always panicking about it for myself and feeling guilty that I may have passed it on to my two daughters. I didn't want them to spend there lives just waiting for it to show up. 

    Everyone is different so if that's how you feel, then that's how you feel.  Whichever way is best for you is the right thing.

    There appears to be no rhyme or reason for what triggers it that they know of yet and all you can do is the best you can to prevent it recurring as guided by your team.  

    Take it easy.
    xoxoxo



  • Sister's avatar
    Sister
    Member
    7 years ago
    @gizmo I understand completely where you're at.  I had the testing done earlier this year as I lost my sister to this.  I didn't know what result I wanted - positive, which would give me a reason to get rid of the other breast (and possibly other bits) so I never have to think of it again or, negative.  As for insurance, my doctor told me (in the nicest possible way) that I'm already stuffed with regard to that.  In the end, I came out negative for what they know about now, although that will be reviewed down the track.  What it does mean is that my girls will be screened for bc from 30 as the geneticist is pretty sure that there is a familial genetic link, just not one of the big ones.
  • kmakm's avatar
    kmakm
    Member
    7 years ago
    What @lgray3911 said!

    Reactions to such an intensely personal illness as BC are just that. Intensely personal. There's no right or wrong in your feelings when it comes to this.

    Human beings are unique in that we need and love to know 'why'. Hence science, travel, technology, religion, exploration and a host of other things! When we don't know why, it drives us nuts. Not knowing, as we all know here, is very uncomfortable. So no, not crazy at all!

    Genetic testing is a serious thing to undertake, with potentially serious ramifications beyond yourself. There's often counselling involved in the process. Were you offered any? If not, can you get some? It might be good to talk your feelings over with someone expert in the area.

    If that doesn't take your fancy, you might have to work on 'acceptance'. You know, 'it is what it is' kind of stuff, rather than torturing yourself with the 'why'!

    I'm neither an alcoholic or religious, but I love the Alcoholics Anonymous Serenity Prayer.

    "God, grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    And wisdom to know the difference."

    Good luck with your surgeries, and let us know how you get on with the testing. Look after yourself, and be kind to you! K xox
  • Zoffiel's avatar
    Zoffiel
    Member
    7 years ago
    Since 2006 I've had most of my disposable bits removed. A recurrence after n 2016 meant some non disposable things, like my axillary lymph nodes, went too. 
    My logic may be completely screwed up, but I don't give a hoot about the gene test from my own perspective as I know my disease is aggressive and rerstant to the treatment ive had,. Why I have it is irrelevant, and even if I am gene susceptible, everyone I'm related to still needs to do their own tests.
    Follow your heart @gizmo
  • lgray3911's avatar
    lgray3911
    Member
    7 years ago
    Hi @Gizmo it’s not crazy at all. It gives you the excuse to do what you want to do without feeling that people think you are mad or being extreme etc... I opted for double mastectomy even though single was what everyone deemed necessary. However I knew from the moment I got diagnosed that I wanted both breasts gone! Am a logical person and was only 37 at time of diagnosis last year with 2 small boys so no brainer for me. I had a moment of thinking what will people think but when it came down to it I’m trying to maximise my chance of watching my boys grow up. So after a very LONG WINDED answer...... it’s your body and your choice do whatever feels right for you and you don’t need a result from a test to tell you what to do. Follow your gut and your heart! Good luck xxx
  • Vangirl's avatar
    Vangirl
    Member
    7 years ago
    @Gizmo I had the gene test and it came back negative. The counselor told me that I am still considered to be at higher risk for BC than the general population, but nowhere near the risk that it would be if I had one of the genes they test for.
    My breast surgeon still asked me if I wanted to opt for a double MX rather than just remove the cancerous boob but I had already decided that I didn't want to go through unnecessary extra surgery, and she concurred with that decision.
    The explanation given as to why my mother and I were both diagnosed with breast cancer in our early 40s was that there is likely to be some combination of genes at play. A study is underway, of which I have agreed to be a part, so in future they may know more, but in the meantime it is somewhat of a mystery, and not something I dwell on. 
    I'm glad I haven't got a faulty gene as that would have had implications for not just me but also my two sisters, my neice, and potentially my brother. 
    As it is, my sisters are advised to have yearly rather than biannual screening, and I will be followed up and monitored as per all women who have had breast cancer, and as you will be.