Forum Discussion

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
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  • Elise_Rim's avatar
    Elise_Rim
    Member
    2 years ago
    @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's avatar
    arpie
    Member
    2 years ago
    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's avatar
    lrb_03
    Member
    2 years ago
    @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's avatar
    gorgybee
    Member
    2 years ago
    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
  • Elise_Rim's avatar
    Elise_Rim
    Member
    2 years ago
    Hi @gorgybee, welcome to the ‘exclusive TNBC’ group. 😒 I’m sorry that this has happened to you. Like me, I have no family connection to the beast either. 
    I have just completed 3 weeks of daily radiotherapy after having what appears to be a very similar regime to yours. Chemo (AC, then taxol/carbo), surgery, then radio. So I’m ’through the other side’ so to speak. 
    I hope you’re coping okay. I found a woman in Melbourne like myself who answered any questions I had and I am happy to do the same with you. I found it super helpful to cancel out the noise and speak to people who had been through the experience. Also relying on my fabulous medical team. 
    Look after yourself. 
    Elise x 
  • gorgybee's avatar
    gorgybee
    Member
    2 years ago
    Hi Elise,
    Yes it sounds like ours is very similar treatment wise. 
    I have done surprisingly well on the AC and I hope that the Taxol is similar, as I will have to return to work in January. I see my surgeon again in January and plan what to do, he is keen for lumpectomy and axillary clearance. I don't have a preference for lumpectomy or mastectomy, I am trusting in the breast care nurse and surgeon to help me make the right choice. 
    Did your tumour shrink after the chemo? I'm paranoid at the moment that it hasn't changed, even though I've only just done the 4 cycles of AC.
    Thank you for responding and the offer of answering questions etc,  that's lovely of you.
    Georgie x
  • gorgybee's avatar
    gorgybee
    Member
    2 years ago
    Thankyou @Mez_BCNA I will join the triple negative group and I have bookmarked the video to watch.