Guilt

edited December 2019 in Welcome & Orientation

Hi all


I've been processing a bit lately. I'm at the 3 year anniversary of when OC was suspected for me (3 years post treatment in July). All is going well and I've had the BRACA testing done and I don't have the mutation. My check ups are now 6 monthly with no blood tests since my CA125 never elevated even when I had cancer.


I'm feeling a tad guilty that I have gotten off so lightly. A year after my diagnosis my mum had to have her ovaries out (thankfully her tumour was benign) but now she has been diagnosed with breast cancer. Her mother died of breast cancer in her early 50's - my mum is in her early 70s.


Starting to wonder if my daughter (25) should get the BRACA testing done - would there be any point given mine was negative and there is absolutely no history on my husband's side of the family?


I know they are finding out more all the time and I wonder if there aren't more genes involved than just the BRACA ones.


Kind regards


Rachel

Comments

  • Hi Rachel,


    Talk to your doctor about additional testing.  There are other genetic factors they can test for.  My doctor had me tested for another genetic mutation and it came back inconclusive same as my BRACA test.


    Nikki

  • Hi Nikki


    Do you mean the Syndromes?


    The testing Dr from Melbourne said I was negative for the BRACA mutations and any of the known syndromes. They are learning more all the time so maybe one day something will show up.


    Thanks for your reply.


    :)

  • Hi Rachel, I agree with Nikki to talk to your doctor.  At a Pink Hope Information Day held in Canberra on the weekend, it was interesting to find that there were quite a number of woman there that had family history of breast and ovarian cancer, however they were negative for the BRACA mutations.   It was also mentioned by a couple of presenters that if there is a family history it is important to be vigilant about regular screening, eg Breast MRI's, mamograms, ultrasounds.  Even though there is no history on your husband's side, he could still be a carrier of the gene mutation.  Take care Helen

  • My doctor mentioned other gene mutations that they can do targeted treatment with.  There's something new out and I didn't fit the criteria this time which was annoying.


    I love how it is an inconclusive result not a negative. Who knows what's there that medical science hasn't caught up with yet!  I've been having treatment on and off for the past 7 years now and every time I start again there is something new.  Hopefully one day soon they'll crack it and we won't have to go through all this trauma.


    Nikki

  • Hi Rachel,


    I get where you are coming from re the guilt!  It's not easy living when those around you and close to you are not.  :(


    Given that you, your mum and grandma all had either ovarian or breast CA, it seems that there is enough familial history to warrant your daughter and your sons (if you have any) having gene testing.  (Probably stating the obvious here, but keep in mind that BRCA and other gene mutations are not restricted to women.)


    I had genetic testing following my ovca diagnosis back in 2014.  I "qualified" because my brother had bowel cancer at a young age.  It was found that I have Lynch Syndrome (faulty PMS2 gene) and with it, an increased risk of developing many cancers, ovarian being one. Resulting tests on my siblings and mum found that mum too carries the faulty gene, as do 4 of my 5 siblings. My nieces and nephews are in various stages of being tested, though it came too late for one nephew who passed away in March 2016 from bowel cancer at age 24.


    I strongly recommend getting a referral to a familial cancer clinic and participate in the counselling that they offer.  Your GP or Oncologist can refer you.  If nothing else, they will give you good advice on the best options for you and your family.


    I'm happy to talk more about mine and my families experiences with genetic testing if you'd like.


    Take care of you!


    Karen xx

  • Thanks Karen


    My understanding was that they had tested for everything that is currently 'testable' genetically. I will talk to my doctor again though.


    My mum has her third breast surgery in about as many weeks on Monday, in some ways its harder to be the one watching that going through it this time.


    Rachel

  • Hi Rachel,


    I'm sorry to hear that your mum is having such a terrible time. It can't be easy watching her go through it all, especially when your own memories of the experience are fresh in your mind and not something that you'd wish on any one.  This disease just sucks!


    Speaking to your GP is probably a good idea.  No harm in getting all of the facts!


    Take care,


    Karen xx

  • Hi Sandra


    Has your family had genetic testing done?


    My mum has had the all clear now so she is on the monitoring program same as me.


    I added the photo when I registered but I think you can add one anytime.


    Best wishes


    Rachel

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