I’m hoping to hear some first hand positive stories or tips on how to put the fear of recurrence out of mind as I know lots of people have gone through and finished treatment and are the other side.
I was diagnosed in September with TNBC and have just had a SMX, with chemotherapy starting in a few weeks and planned other side SMX when it comes to reconstruction.
However all I can think about is the nature of TNBC and the what ifs and possible outcomes of a future secondary diagnosis, or if it comes back.
I have two young children age 3.5 and 8 weeks and the fear for both myself and husband and the thought of the girls not growing up with a mum is utterly terrifying.
I want to be positive and hope that after treatment finishes I can try and ‘live’ my life as full as I can but I just don’t know how this is possible at the moment.
I don’t have any advice but wanted to send some love and support.
I think that being able to share the anxiety in a safe space like this is a good start
Hi @cjam19
I’m sorry you find yourself here but I’m so glad you’ve found this forum, we’re all here for you
I had a 3 year old and a 6 week old when I was diagnosed with TNBC, that was in July 2023, so I completely understand where your head is at.
If you are based in the UK, please get in touch with Mummy’s Star- they’re a charity for parent(s) with cancer who were diagnosed during pregnancy or within the 12 months after, I relied on them a lot during chemotherapy for support. The Osborne Trust is another charity for parents with cancer, we were very kindly gifted a soft play voucher, but you will need a referral, I think Mummy’s Star can help you with this.
I also used Breast Cancer Now’s Someone Like Me service, where a lovely woman called me and spoke to me, she was also a mum with young kids and I needed to hear it was going to be ok. Please do sign up if you’re in the right headspace to, it’s a wonderful service and completely free, I’ve met some of the volunteers who call people and they’re so so lovely.
I have found my own ways to cope with anxiety, slow gentle walks and reading are my best friends whenever I feel like I’m spiralling. Putting down my phone is a huge factor in this, otherwise I end up googling things I worry about. I did a lot of baking when I first diagnosed, that helped take my mind off things. The stats and studies seem really scary for TNBC, but I soon learned that the studies were done with a small number of people, not a huge nationwide thing. So many factors aren’t included in a lot of these studies, like pre existing health conditions or fitness levels, diet even. All of these factor in to your wellbeing. And most of the time you’ll find studies completely contradict each other. New medicines are being developed all the time, I’ve heard of a really amazing vaccine with trials in the US for TNBC which fills me with hope that one day we won’t need to worry about recurrences.
If your hospital has a Maggies, it’s a such a welcoming place to just go and talk through anything you want/need to. I used to go in quite a bit and just cry, there’s always someone there who understands. Don’t feel like you have to sit alone and go through this on your own - there is a wonderful beautiful community out there waiting for you
Cut yourself a bit of slack. You have been dealt an awful hand and it is absolutely natural that you should experience fear and dread. There is no right or wrong way to cope but my strategy was as follows:
Accept its a horrible diagnosis and you are entitled to be apprehensive. Take the time to do some research and you will see that your chances of a positive prognosis are very good, especially if, as I imagine, you are comparatively young. Try to deal in facts rather than imagining the bogeyman, whilst recognising that its okay to be scared.
I dealt with cancer by simply putting one foot infront of the other and getting through each day. By now I am sure you have a clear path for treatment and I found this helpful. It really is true that if you take it step by step, you will find you are at the end of your cancer journey quite quickly.
Make sure you get as much enjoyment out of daily life as you can. I know this sounds weird but you are a young woman in a loving family so cancer is only a part of your life. Do NOT let it define you. Get all the help you can when the treatments get you down but otherwise, try to carry on as normal. Speculating on the future is the road to madness and it helps nobody if you spend your days thinking of what might be.
I wish you all the very best and have you in my thoughts. You WILL get through this.
I’m so sorry to read you have been through this. You will find a lot of support on the forum and the nurses are very helpful. You can always phone directly or email and they respond very quickly.
I didn’t have triple negative but I have a friend who did. She is doing wonderfully well 8 years after diagnosis with no recurrence and is living a very full life. I hope that may help give you some reassurance.
When you’ve got to the other side it’s often quite hard and our mind seems to switch a gear into focusing on fear of recurrence. It’s very common and can be very frightening. Do consider talking therapy which helped me enormously. It can be arranged through Macmillan. You can speak to your BC nurse about it.
So sorry you are going through this. I was diagnosed with TNBC in September 2024, just before my son turned 2. I had my last immunotherapy treatment yesterday. You will get here too!
Of course I am terrified about what might happen next but cancer is slowly becoming a smaller part of my life and I’m giving it less headspace. It’s already taken so much from me over the last year, I’m not letting it take any more!!
I would say this period just after diagnosis and before you start regular treatment is one of the hardest. As @teddy271 put it so brilliantly, it’s a shitty situation and you need to process it in your own way and at your own pace. I do agree that taking it one day or one appointment at a time is the only way you can get through it. Try not to look too far ahead and dwell on the many possible outcomes or ‘what ifs’. My breast care nurse told me this too, and she was so right. It’s hard at first but once you get into the routine of chemo it gets easier.
Try to be present and focus the energy you have on your kids. You are stronger than you know and you will get through it for them.
Hello I was diagnosed with TNBC last October (2024) my son was just 3 so it was an absolutely terrifying time for us all. However I was able to have treatment while he was at nursery and everything finished this September the week he started school. I signed up on here to ‘someone like me’ I had a lovely lady paired with me please give them a go I had a couple calls set up. The bit of advise she gave me on reoccurance was ‘Do not let tomorrow steal the happiness of today’ this clicked in my head it was what I needed to hear. I’m in therapy weekly as after it all I’ve suddenly experienced anxiety, that isn’t actually anything to do with this it’s a side effect that I’ve got triggering this anxiety but it’s getting much better now. My advice is to surround yourself with positivity and positive experiences. Mine was a friend of mines mum in Greece was diagnosed with TNBC 20 years ago and she’s absolutely fine. Wouldn’t that be amazing if it were us? The further you get away from this time the better you will feel and even hardly remember this time so you go and enjoy your children and create those special memories. I’m coming up to my first 6 month check after being cancer free good luck lovely xx
