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greyhound's avatar
greyhound
Member
4 years ago

triple negative

Hello to all you lovely ladies who have also been affected by a diagnosis of breast cancer.
I am 57yo and had a routine mammogram recently which showed an area in one breast that looked abnormal. I cant feel a lump and neither can the Drs so its early stages.
Biopsies done and a triple negative diagnosis confirmed last week.
I have been on an emotional roller coaster since...having MRI, PET scan and genetic testing.
I've been told not to google it.
I can read between the lines that its a difficult breast cancer.
It would be lovely to hear some positive stories or words of wisdom about this breast cancer to help.
I am super anxious and wanting treatment to start ASAP...still no date to commence treatment.
Thankyou in advance


17 Replies

  • Hi @greyhound - I love your pen name! I am more of a Labrador.
    I am 63 and was 62 on diagnosis ( September 2020).
    I didn’t have triple negative but had ER positive lobular cancer.Most breast cancer is ductal.
    I understand post menopausal women are more likely to have ER positive cancer and younger women more likely to have triple negative but that’s just a generality - everyone is individual and will get an individual treatment plan.For example I didn’t need chemo but that seems universally prescribed for triple negative.I did have radiotherapy which they do not often do with a mastectomy but I was recommended it due to the size of my tumour.
    My treatment was in the private system and my surgery ( mastectomy)  was 5 weeks from when I first saw my breast cancer surgeon ( I had received my diagnosis from my GP a few days earlier.)
    They had to do lots of scans and tests on me first to see what the treatment plan should be and I lost a week with a cold and had to get a Covid 19 test etc.
    The anxiety of waiting for all the various results is very stressful and even though my surgeon said my cancer was extremely slow growing and had been growing there for a while I just wanted it OUT!
    We do have world class Drs in both the public and private systems  in Australia but that  doesn’t mean everyone always gets a 100 percent grade A experience and sometimes you have to advocate for yourself.
    Take care.


  • Well, everyone’s case is different. I was diagnosed on 20/02/20, and my surgery was on 01/04/20. But they thought I had DCIS, low grade. Plus it was hormone positive, HER2 negative. I think with you they might want to start chemo first, I’m not too sure. Either way, I wouldn’t want to wait more than 2-3 weeks for something to happen. But then again, that’s just me. Im not a doctor. It’s only from comments I've been reading about it in places like this. Use your persistence to get things moving if you need to. I didn’t have private health cover either, so I used my super to pay my surgeon privately. The hospital agreed to treat me as a public patient, so I didn’t have to pay for that. I didn’t do chemo, but I did radiation and saw an oncologist for hormone treatment, all for free too. It was at Genesis Care and the Kinghorn (Sydney) which I think are private, but also accept patients publicly. I’m not sure how. I got appointments very quickly and treatment started quickly too, once I was ready. This was in 2020, but be persistent anyway 💟. 
  • Thankyou for your comments.
    Im definetly persistent and i do it as pilitely as i can.
    So far everyone has been very helpful but it's possibly the private system...it's under staffed and under funded.
    Unfortunately I don't have private insurance.
    I'm thinking if I did things May be moving a bit quicker.
    I know they have to cover all bases to make sure the treatment is right but what is a reasonable time from diagnosis to starting treatment?
  • Hi @greyhound, sorry you find yourself here with all of us. This is a great support place and no judgement. We are all here to support you. I didn't have triple negative but I agree with @FLClover about what treatment means for it. Breast cancer is so complex but remember that treatment these days are so much better and more effective and continue to improve. Take one day at a time. It can all be very overwhelming at the start. There is so much to learn about it, new specialist, nurses  terms etc to understand the treatment and what you can do. Be kind to yourself and take deep breaths. You will get through it. Please ask any questions you have of your dr, nurses and with us here. Best wishes 💐
  • Hello! It’s thought to be more aggressive in the sense that it can grow quite quickly. This is why it’s important to push for treatment and surgery if it seems to be taking too long. It also doesn’t feed off your hormones, which means the only treatment available is surgery and chemo. That’s what I know about it. I also know I’ve read quite a few success stories, with ladies having beaten it and cancer free 10+ years. It does sound like it’s in the early stage too. 
    There are Facebook groups for this type of cancer that you could join, if you’re on Fb. 
    Deep breaths to keep as calm as possible, and def stay off google. It’ll just scare you unnecessarily. Everyone’s told to stay off it for good reason. 
    ❤️
  • Dear @greyhound

    I don’t have triple negative but never felt a lump either. There are many ways bc can first be detected and a lump is just one. Don’t google. My symptoms screamed inflammatory breast cancer, according to Google. I didn’t have it. Having a medical team that you like (everyone responds best to different things) and trust is really important. So is feeling things are moving at a reasonable pace. There can be a lot of waiting involved with cancer but we all work out what’s reasonable and what is not. It’s perfectly possible to be a polite person but also to be ever so politely persistent! You are your own best advocate. Best wishes for a good medical team, good treatment and focus on the future.