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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Triple negative breast cancer

22 replies

UsuallyHappy43 · 11/07/2024 20:52

My daughter has been diagnosed with triple negative breast cancer. She is 30 years old with a young baby. Are there any positive stories of same cancer out there please? We're terrified tbh. She has grade 3 but still waiting for full results from tests.

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Snowbind · 11/07/2024 21:29

That’s really tough for you all @UsuallyHappy43, I’m sorry. I was diagnosed with this a few years ago - stage 3, and I had a 1 year old. I finished treatment last year (chemo, immunotherapy, surgery, radiotherapy) and all has been well since. Regular scans now to check in.

I remember being petrified at the beginning, and then the treatment starts and you just have to get on with it. There were difficult days but we got through them. Breast Cancer Now run some younger women together events which are good (although possibly a little overwhelming at the start) and there are more people than you might expect in the same situation - lots of Facebook groups too if she might find them helpful, and many people with positive stories.

I hope you and she will be ok. At my lowest point my mum was doing my shopping and batch cooking meals for my little one, which was a huge help.

It seems weird already now that it ever happened! I try to just put it aside and concentrate on the here and now. Best wishes to you all

UsuallyHappy43 · 11/07/2024 21:48

Thank you so mucn. I have not stopped crying but trying to be strong for her. We have no family history of breast cancer so this has just side swiped us all. It's good to hear you are successfully through the other side. I'm sorry to hear you had the same so best wishes to you too xxxxx

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Maddy70 · 16/07/2024 15:32

I have tnbc I'm almost at the end of my chemo. About to have a single mastectomy following negative genetic screening

The chemo honestly hasn't been bad at all. My life bar hospital appointments has been as normal. The chemo is far better than I expected. Other than hair loss and achy legs I've had no side effects.

UsuallyHappy43 · 16/07/2024 23:06

Thank you Maddie, do you mind me asking, did you have immunotherapy alongside your chemo? My daughter has had 2 sessions and is still feeling well. I'm not sure how long the 'honeymoon' period will last, but I hope like you she can get through it without too many side effects.

I sincerely hope your surgery goes well and you recover quickly. Thank you for your support xxx

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Blackcats7 · 16/07/2024 23:19

My friend was diagnosed in 2014 aged 35. Also stage 3. She had one breast removed and chemo. She is absolutely well and was discharged from oncology monitoring several years ago. She found chemo horrible but obviously it saved her life. She decided not to have breast reconstruction and uses a knitted boob in her bra instead.

marmiteloversunite · 16/07/2024 23:27

I'm so sorry she is going through this.

I was diagnosed at 48 which was six years ago now. I had a single mastectomy then chemo and radiotherapy. I then had a second mastectomy for symmetry.

It was a tough time but with support you do get through it.

Glassbottom · 16/07/2024 23:33

Hi, sorry to hear your news, just wanted to pop on to say my friend was diagnosed at stage 4 just before COVID. She had Chemo, radiotherapy, mastectomy and reconstruction. She was amazing throughout, especially when we could be around to help her or her children. Today she remains extremely well. Wishing your daughter and your family all the best

marmiteloversunite · 16/07/2024 23:42

There is a triple negative uk group on Facebook which might be helpful.

Maddy70 · 17/07/2024 13:05

UsuallyHappy43 · 16/07/2024 23:06

Thank you Maddie, do you mind me asking, did you have immunotherapy alongside your chemo? My daughter has had 2 sessions and is still feeling well. I'm not sure how long the 'honeymoon' period will last, but I hope like you she can get through it without too many side effects.

I sincerely hope your surgery goes well and you recover quickly. Thank you for your support xxx

Yes immunotherapy too. I have sailed through it tbh. Obviously get some tired days but honestly not bad at all. Fingers crosses she will be the same

jannier · 17/07/2024 13:15

I'm now 10 years clear of T neg grade 4 found on lumpectomy 3 on biopsy....I had chemo and rads. Worked as a childminder right through except for 2 weeks recovery from surgery and first round of chemo. ....lots of support from friends.
No long term problems
It's scary but she can get through.

Sending love.

UsuallyHappy43 · 17/07/2024 18:40

Gosh thank you both so much ❤️. This gives us all so much positivity which we need in spades right now. My daughter is obviously at that start of this journey but already having been rock bottom we can see the road ahead a bit more clearly. It means a lot to have the support of wonderful ladies like you. Best wishes xxx

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MangoBiscuit · 28/07/2024 10:24

41 here. Mine isn't triple negative, but apparently close enough that I've been treated as if it is, but with one extra injection of goserelin, to stop oestrogen production.

That first bit, before I got into the swing of things with treatment, was the worst part. So much information to take in, so many unknowns, and the waiting for chemo. I struggled quite a bit mentally through that. Once I started chemo, I found it all easier to deal with.

The chemo hasn't exactly been fun, but it wasn't anywhere near as bad as I'd feared. Tiredness and brain fog were probably the worst bits, but getting in a short walk at some point, and an afternoon nap during my lunch break, has kept me going.

I am now post op (excision, aka lumpectomy), having radio therapy and a further 8 cycles of chemo (2 cycles in), to try to make sure it doesn't come back. We're planning for the future again, after feeling like everything has been on hold.

Things that helped me through chemo:
Audio books - low effort entertainment, thoroughly reccomend "Doctors get cancer too'' by Philippa Kaye. I also found audio books helped me get to sleep when I struggled.
Snacks you can eat one handed - if she has steroids pre-treatment, the hunger is ridiculous!
Having a port a cath fitted - my veins are rubbish, port a cath meant not struggling to get a needle in, and no more bruise covered arms
Drinking plenty of water. I was advised 2L a day. Always felt worse if I slacked on drinking my water.
Making sure I had some time to myself to process my emotions, and have a bit of a cry. Maybe sounds a bit daft, but it's a lot to take in, and it all seems to happen so quickly, it can be really overwhelming. Having a good cry, and not bottling it up helped me cope.

Sending love and strength x

Kitkat1523 · 28/07/2024 10:31

All the stats you read on the internet are massively out of date…I wish your DD well

Littlecaf · 28/07/2024 17:05

Sending love OP. I start chemo on Tuesday (HER2 not triple negative but still shit). So scared. The best thing you can do is be there for her. Physically, mentally etc. She and you can do it. (My own DM is amazing but she bloody wound me up the first few weeks after diagnosis- she had mentionitis. I’d be having a good day coping with kids, work, school run, washing etc and she’d pop over and want to talk right at the moment I didn’t want to talk. Take your cues from her.)

UsuallyHappy43 · 28/07/2024 19:53

Thank you. Honestly it helps to hear from ladies who've been through same/similar. We're in a better place right now. My daughter is incredibly strong minded and up for the fight ahead. Her white blood cells were down but she's had some injections to boost the immune system but making her body ache like mad.
Thanks again. Best of luck to you all too.

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UsuallyHappy43 · 28/07/2024 19:58

Littlecaf sorry to hear you're on start of your journey too. I try not to pester my daughter too much as I know she needs headsptace. Her first few chemos have been okay. I hope yours are too. Sending best wishes for you. Xx

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MangoBiscuit · 29/07/2024 18:29

Are the injections she's having GCSF's? Granulocyte colony stimulating factors, I think that's what they're called. Filgrastim is the one I had. The bone pain was quite draining. I took antihistamines 1 hour before doing my injection, and it really helped. I still got aches, but no where near as bad. It was advice I read on the cancer research forums.

If it's those injections, might be worth checking with her team if she's OK to try antihistamines before injections.

UsuallyHappy43 · 29/07/2024 20:29

Thank you for this tip MangoBiscuit. I think she is having filgrastim. I'll certainly let her know about the anti-histamine as I reckon going forward she will probably need it again. I'll ask her to check with her nursing team if it'll be okay for her to take. She's finished her injections for this week thank heavens.

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spikeandbuffy · 29/07/2024 20:32

I'm on filgrastim for life (not for cancer)
Antihistamines, I pre dose with paracetamol and any other painkillers too
My worst side effects from them are fever/shivering/headache. The gel headache patches help too

UsuallyHappy43 · 29/07/2024 21:51

Oh gosh! That must be hard for you I'm so sorry. Life doesn't half throw up some curved balls doesn't it? Thank you for your support and best wishes to you too xx

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Teats4twins · 20/10/2024 21:49

Hi there, I am 30 with twin toddlers. I was diagnosed with grade 3 TNBC last September. I was absolutely terrified at the beginning. I had a lumpectomy to start with, the cancer came back in exactly the same place within a month. I did not feel hopeful at all and became terrified of further scans etc. I let the fear rule me for a while but in the end I agreed to CTs and MRIs which eventually led to a positive outcome of no sign of spread. I then had a single mastectomy, afterwards completed the 5 days of radiotherapy and two weeks ago I got the all clear and have been discharged. It's been quite the journey and I feel will always be there but there honestly the best thing I could advise is to tell that fear to do one! Treatment is so good these days, I have been very well looked after and all in all I didn't think a year ago I'd be where I am now. Sending positive thoughts to your family x

UsuallyHappy43 · 21/10/2024 21:47

Thank you very much. My daughter is coming up to the last chemo session this week, it has been incredibly traumatic and her body hasn't coped well. Hospital, infections, side effects have all taken their toll. We do though now have a chink of light. She will have her mastectomy (double, due to the discovery of being a brca1 mutated gene carrier, putting her into a high risk for it rearing it's head again in the future). The roller coaster is almost done though and prognosis is very good. Thankfully. Roll on next year when she can start to piece her life back together again. It has been good for me knowing there are people like you out there ready to listen. Best wishes to you all. Thank you xx

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