Triple Negative Diagnosis

Elise_Rim
Elise_Rim Member Posts: 10
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
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Comments

  • arpie
    arpie Member Posts: 7,567
    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 negative&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
  • Fufan
    Fufan Member Posts: 123
    edited July 2023
    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!
  • Cath62
    Cath62 Member Posts: 1,274
    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.
  • Elise_Rim
    Elise_Rim Member Posts: 10
    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! 
  • arpie
    arpie Member Posts: 7,567
    edited July 2023
    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

  • Elise_Rim
    Elise_Rim Member Posts: 10
    @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. 
  • Fufan
    Fufan Member Posts: 123
    Age bias, @Elise_Rim?  I’m 77.
  • Elise_Rim
    Elise_Rim Member Posts: 10
    @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
    arpie Member Posts: 7,567
    edited August 2023
    Definitely age bias, I am afraid, @Fufan & @Elise_Rim :( 

    And yet the POSTER WOMEN of the entire Breast Cancer Movement in Austrlia (specially Jane McGrath was in her 30s when diagnosed, 42 when she passed) ... as was Rove's first wife, the actress, Belinda Emmett, aged 32 when she passed away (but only 24 when diagnosed) ... 

    Her song, Less than Perfect is very haunting - it was played at her funeral & released to the public afterwards:
    https://www.youtube.com/watch?v=cu04Q6RT8-I

    And yet Breast Cancer NSW CONTINUES to advertise only for women aged 50-74 to present for Mammograms - when it is legally available to ALL WOMEN over age 40 (and younger if they find lumps or have concerns or family history.)


  • Julez1958
    Julez1958 Member Posts: 1,114
    oh @arpie
    those lyrics ARE haunting !
    agree that there should definately be publicity about the availability of breast cancer screening for 40 to 50 year olds and more publicity about the need to canon your breasts for lumps, changes etc.
    I was shocked to see how manyyounger women ( I was 62 when first diagnosed) were in the waiting rooms of my various breast cancer medical appointments.
  • Elise_Rim
    Elise_Rim Member Posts: 10
    @Julez1958 and @arpie...I have spoken to many colleagues in their 40s who have been told they are not 'priority' when going to get a free mammogram. Yesterday, I caught up with a friend who is 45. She went to her GP (in Melbourne) and they told her she would come across resistance when booking for a mammogram, but to persist and just say in a respectful manner that you are entitled to the mammogram. So she got it done last week. They did ask her why she wanted one done at the time of booking and was questioned again in the clinic, but were happy to do it. 
    I would like to advocate for the mammogram program to be from 30 onwards for all women wishing to access it. I think it would save our healthcare system a lot of money in the long run if screening were available to a wider net of women. It is on the increase in younger women in any case. It's scary and sad. 
  • arpie
    arpie Member Posts: 7,567
    edited August 2023
    I am so glad your friend stuck to her guns & got seen.  As I understand it, if you go thru a regular Radiology service, you will be charged, no matter your age - but Breastscreen Vic/NSW/QLD/SA/WA/TAS and NT have NO RIGHT TO SAY 'NO' if you are over 40!!  And they DON'T have to pay for it themselves or go thru their Health Funds (who wouldn't cover it anyway, I think!) If they are currently UNDER 40, they may have to pay for it - unless there is close family history or they have the BRCA gene ... I am not sure ...

    A buddy in regional Vic, in her 40s has just been diagnosed with BC & is seeing the surgeon on Mon. :( 

    I would like to advocate for the mammogram program to be from 30 onwards for all women wishing to access it. I think it would save our healthcare system a lot of money in the long run if screening were available to a wider net of women. It is on the increase in younger women in any case. It's scary and sad. 

    Precisely, @Elise_Rim - but I think we'll be pushing it uphill to get it down to 30, given the resistance they already show for those aged 40-49 and over 74 (who everyone forgets - but there are MANY who develop BC aged over 74!) when legally they SHOULD see them!  Sadly, they don't look at 'earlier mammograms' as 'preventative' - they see it as 'over servicing'!! 

    Those who HAVE had MGs under 50 and over 74 also don't get reminders to attend again in 2 years .... they need to 'diary it forward' themselves as a reminder!

    Same as some of the Stage 4 treatments - sometimes they only give the 'better ones' as almost 'palliative care' choices, instead of early on in the diagnosis, when immunotherapy has been known to actually stop some cancer in its tracks ....  it really is a false economy - but they just can't see it!  :( 
  • lrb_03
    lrb_03 Member Posts: 1,267
    @Elise_Rim, re 
     I would like to advocate for the mammogram program to be from 30 onwards for all women wishing to access it. I think it would save our healthcare system a lot of money in the long run if screening were available to a wider net of women. It is on the increase in younger women in any case. It's scary and sad. 

    Another part of the reason that routine screening isn't offered at all to women under 40 is that you, and they, are far more likely to have not just dense but extremely dense breast tissue, making cancer much harder to detect.
    I do agree that it's terrible the way so many younger women's concerns re breast health are dismissed. Sadly, there is actually a growing body of evidence that concerns women have regarding health issues are taken less seriously and we are diagnosed at a far later stage with general health conditions than men
  • gorgybee
    gorgybee Member Posts: 3 New Member
    Hi there,
    I was diagnosed in September with TNBC, lymph node involvement. I'm 42, no family history and found the lump myself.. currently half way through chemo. Start the Taxol component on the 19th (12 weeks of it) I am having chemo prior to surgery and then more immunotherapy and radiation. (3cm tumour left breast) feeling a little burnt out. I had to take some leave from work as it was all abit too much at times (stressful job and 3 teenage kids!)
    I'm glad to have found this forum, it makes me feel not so alone. 
    I hope all is going well in your journey so far x
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 870
    We are glad you have found the Online Network @gorgybee , you are also welcome to join the private group 'Triple Negative Breast Cancer (TNBC)' https://onlinenetwork.bcna.org.au/group/30-triple-negative-breast-cancer-tnbc and you may like to watch Ask the Expert: Triple Negative Early Breast Cancer with Dr Nick Zdenkowski