Newly diagnosed
Bellak
Member Posts: 1 ✭
Hi I’m 44 and have just been diagnosed with triple negative metastic breast cancer. It has spread to my liver. First time cancer and extremely scary. After first finding out it was cancer it took nearly 3 weeks to get oncologist appointment and then had a pet scan. They have referred me for a clinical trial at the PA but everything seems to take so long. Meanwhile I’m scared it’s spreading more. Finally got a phone call yesterday to go in tomorrow to have all this pre screening tests done. Let’s hope I meet the criteria. I’ve been just trying to live life normal and trying to be very positive but is so frustrating.
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Comments
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Hi @Bellak. It's bloody awful, I'm so sorry you've received this diagnosis.
It's so frustrating when you feel the system is moving so slowly. Especially when you've just been diagnosed. It's a dreadful time and you just want action. I'm not a doctor but I'd like to think that if there was any urgency you would have been attended to by now.
Getting onto a trial is excellent. There is so much research going on; it's quite exciting.
I hope you have good support around you. Distraction is good while you're waiting, and I think that anything you can do to give yourself a sense of control is useful. So exercise, meditation, counselling, overhauling your diet if you need to, and good sleep hygiene. Or just bloody binge watch a bunch of shows! Whatever you need to do to get through this period.
If you need to talk the BCNA has some lovely folk on their helpline, 1800 500 258.
Sending you the biggest bear hug lovely, K xox5 -
Hi @Bellak, the waiting is truly horrible. Do you have a Breast Care Nurse? Even though I did not meet mine in person, I emailed my concerns and questions and spoke on the phone with her in the weeks after my diagnosis. It helped.
What's your general location? There may be a local support group which you could find on this forum or through the Cancer Council. Wishing you all the best.xxx
https://www.bcna.org.au/about-us/advocacy/position-statements/breast-care-nurses/
https://www.bcna.org.au/metastatic-breast-cancer/peer-support/
https://www.bcna.org.au/services-and-support-groups/services/31400
https://www.cancercouncil.com.au/get-support/coping-with-cancer/
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Hi there and so sorry for your diagnosis. I'm sure you'd be in shock just trying to take it all in. You may have this already but wanted to ensure you have all resources unavailable.
https://www.bcna.org.au/resource/kits/hope-hurdles/
Also I'm not sure if you are a Mum with young kids or have lots of support so thought if you are this might be helpful also if you are
https://mummyswish.org.au/
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Hi @Bellak I’m sorry to hear about your diagnosis, then the seemingly endless waiting for treatment to begin. Reaching out makes a huge difference, and Its great you have connected to the network..if you have questions or want to talk about how you are feeling,how’s everything going, this is the place. Hang in there and all the best for your trial appointments. Once you know what track you will be on, it will feel better. Lots of love xx2
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Hi Bella
Really sorry to hear. I was treated at the PA last year for hormone positive. There are several breast nurses, one McGrath, one non McGrath and one focused on the oncology side of things. Her first name is Emma have you spoken with her yet?I don’t know if it’s open to metastatic patients but my friend did a clinical trial with immunotherapy last year for triple negative, this was out of the Mater in Sydney but I know they had other sites across Australia.I can try to find the link for the above trial info if it’s not the one you’re being considered for so you can ask about it.It’s hard waiting for stuff as a public patient, but I have nothing but good things to say of the PA.2 -
So sorry to see you here @Bellak. No one wants to hear that C word then be left in limbo waiting for what's going to happen next. The waiting part is the worst as the other ladies have said. Come here if you need to talk to people who know what you're going through. Before you know it you'll be having treatment and back in control of what is happening3
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Hi @Bellak - so sorry to see you here & read your diagnosis. You'll get lots of support and helpful info from our members here.
I hope you are accepted into the trial - fingers & toes crossed for you. xx
If you find yourself getting really stressed (as our minds go into overdrive when we get the diagnosis) make sure you ring the helpline here, to get some helpful tips.
You can also join the Metastatic Group & there, you can discuss any issue in total privacy with those who are going thru treatment. @Riki_BCNA can help you sign up.
https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
Take care and all the best xxx1 -
Hello @Bellak sending you a private message0
