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Elise_Rim's avatar
Elise_Rim
Member
2 years ago

Triple Negative Diagnosis

Hi there, I'm new to this community...and the cancer journey. I am a 39yo school teacher with two beautiful young children (4 and 2yo). I am halfway through five months of chemo with surgery and radiotherapy to follow...

I was hoping that I might find other TNBC ladies on here to connect with, as I navigate the side effects and potential prognosis that a TNBC diagnosis brings with it. I am interested in hearing how other women are being treated with this diagnosis - as there isn't really much 'new' in the space of TNBC with trials and the like. I am being treated by Rick De Boer in Melbourne (St Vincent's Private).

It's a big, bad and scary term - but luckily for me I am not metastatic. I had to advocate for myself after initially attending and being told it was 'just' a cyst. I was told to repeat the ultrasound in 3-6 months. Two weeks later, I was in pain and felt the rapid change; the tumour had double in size and was now a grade 3 tumour. I thank my assertiveness every day for returning to the GP.

Reading through others stories, I am shocked that in 2023, women are still being missed and not offered biopsy in the first instance. I now know that the only way to truly diagnose a lump is through pathology. Lucky for me, I had pain in my boob (another misconception...'breast cancer is not normally painful'). 

Looking forward to connecting with you all. 

Elise x
  • @Fufan...What I tried to express, poorly, is that young women are often dismissed, myself included, due to the fact that breast cancers are more prevalent in older women. That's what I meant by 'age bias'. It's a shame that women in the high risk category are also being dismissed, like yourself. Well done for being persistent with your GP. 
  • @arpie. I am halfway through the blog you recommended and it's fabulous! Thank you endlessly for all the information you have provided me with. You're simply fabulous! 

    @Fufan - know I have been through a number of stories, I am so disappointed for all women. They reflects ours nearly every time! I feel the 'age bias' still exists, particularly for TNBC as it is a 'young persons' cancer. When I had the biopsy, the radiologist said 'it's probably just a fibroadinoma and you can get it removed for cosmetic reasons'. Needless to say my response was 'how long does pathology take?' 12 hours later, it couldn't have been further from his assumptions. 

    I had my titanuim clip inserted at Royal Melbourne Hosptial by what I refer to as 'they rolls royce' team. The specialist there said to me that he obviously hasn't seen many breast cancers in his career. 
  • Are you 'on' instagram?  Check out this post by Liz O'riordan, explaining TNBC ..... you will have to copy/paste the link, as for some reason the 'link' doesn't work just now, here:

    (but take the space out after the 'p/ ...):
    https://www.instagram.com/p/ Cto7e9Kocqo/

    @Fufan - how incredible that someone told you that .... it sort of happened to me, too as I was in the room waiting for the biopsy with ultrasound ... the US person said - "it doesn't look like breast cancer to me!"  Luckily the Dr doing it, ignored him! grrrr. It isn't his job to say things like that ..... let alone an acceptable thing to do & say! grrrr

  • Gosh! This is amazing! Thank you all so much! Particularly @arpie for your wonderful resources. My kids are in daycare monday-wednesday, so I'm always online at the start of the week, without the extra 'business' around me to focus on my own healing. I'm really keen to read/listen to podcasts that are recommended. 
    @Fufan...all the best for you. I am so shocked to continue to read how many people are given false reassurances. I'm glad I've started talking on here! 
  • Hi @Elise_Rim, sorry you are in this situation. Hand in there because it will get better and you will get through it. @arpie is right about knowledge is power and you must ask questions, write them down and take someone to all your appointments if you can. There is alot to learn and it's overwhelming. My situation is different to you. We are all unique. I just wanted to say it is good you reach out. We are all here for you.
  • Welcome @Elise_Rim.  I too am triple negative, and my lump also caused pain.  Despite two ultrasounds a mammogram and a biopsy over a period of three months, I was told it was probably nothing to worry about.  Only my persistence took me back to my regular GP, who sent me to a surgeon.  Within two weeks I had a lumpectomy and a diagnosis,  and a month later a mastectomy and a different diagnosis!  So maybe even one biopsy isn’t always enough.
    All the best for your treatment, and keep on advocating for yourself!
  • So sorry to see you here, @Elise_Rim - joining our elite little group.  We have a wealth of knowledge and first hand experience in most things Breast Cancer ......

    Whilst I am not Triple Neg ... I do know just how much any BC diagnosis can affect you - and well done YOU for advocating so well for yourself & getting checked out sooner than later. xx  This disease can muck with your head even more than your body - so if you find yourself getting stressed .... see if your Breast Care Nurse or GP can put you onto a good counsellor to talk things thru xx. Don't let it become a bigger problem.

    I am sure that other TNBC members will jump on soon & reply xx

    We have a 'Young Women"s group that you may like to join - it is totally private & you can raise any issues you want to in there .... just click on the Groups (in the blue banner above), find the Young Women's group & click 'Join' ....

    You can also search the forum for other threads with TNBC mentioned ..... (I've done it for you and the results are below - with the most recent threads showing 'first' .....
    https://onlinenetwork.bcna.org.au/search?query=triple%20negative&sort=-dateInserted&scope=site&source=community

    Dr Liz O'Riordan (a UK Breast Cancer surgeon who has had BC twice has a very good Blog - even tho a surgeon, she found that what SHE'd been telling her patients about surgery & was totally different to her own experience - she was also gobsmacked at both the mental and physical hit she took after her own diagnosis & treatment & has documented it in her blog.)  :(  Start from the 'bottom' (2015) of page 3 and work your way up thru the 3 pages of Blog .. https://liz.oriordan.co.uk/blog/page/3/

    She also puts up a LOT of good information on her Instagram Page & is well worth reading too.)  She recently mentioned a vaccine for TNBC that has been going thru trials in the UK & USA  and looks VERY PROMISING .... let's hope they have trials in Aussie too, soon.  Mention it to your Onc. xx. The more Oncs asking/advocating for it, the better the chance of trials occurring soon.  You can see the links to her Instagram site in the search link above.

    Listening to Charlotte Tottman's podcasts may also be of use to you - a breast cancer psychologist who was diagnosed with breast cancer (I believe it was during lockdown.)  She has been on a few 'webcasts' on BCNA too, prior to her own diagnosis.
    Charlotte Tottman - Series 1 Podcast:  https://bit.ly/3oD0S0C 
    Charlotte Tottman - Series 2 Podcast: 
    https://onlinenetwork.bcna.org.au/discussion/25505/season-2-podcast-series-what-you-don-t-know-until-you-do-with-dr-charlotte-tottman/p1?new=1

    Sorry to bombard you with 'stuff' .... but knowledge is power xx

    Also check out these other areas in the forum - where yes, we even have some fun & laughs (god knows we need them!). We chat about our pets, garden, art & craft & many more topics that are not BC .... jump onto any area that you like the look of!
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    take care & all the best for your continuing treatment xx