I have triple-negative breast cancer discovered in November. I had sentinel lymph node biopsy on 4th December - nodes, eight were removed, are negative. But my core biopsy done at assessment showed perineural and lymphovascular invasion which is concerning, as it’s a negative prognostic factor in high grade TNBC like mine.
Had wide local excision on 18th, which seems to have gone well, touch wood, not much pain and no apparent complications so far.
I am a doctor, which doesn’t help in this situation - I know enough to make everything more scary, but I’m unable to be rational and objective, because it’s me.
I don’t have an appointment with the oncologist until 10th January, and am desperate to get on with treatment.
Keen to find others who are in the same boat right now… it’s very difficult dealing with the whole world carrying on as normal, hearing all the Christmas music everywhere, when my world feels as if it has changed so quickly, forever, and is suddenly unrecognisable.
Also keen to connect with anyone with TNBC, discovering receptors were negative was a huge shock and is a game-changer in terms of what is ahead.
I am 52, divorced, but ex is my best friend and is being very supportive. Daughters aged 21 and 23 Xx
Being transported to the parallel universe that is “cancer-world “ is not easy at any time but with Christmas going on in the background must make it doubly difficult . I used to walk around looking at people going about their normal lives laughing and joking and making plans when my life had come to a scratching halt and I was so jealous !! I’ve been there twice with 2 different cancers , one of which I was initially told was the most aggressive form of the disease so I have some idea how you might feel.
Waiting for results and the next stage is like being tortured , you desperately need to move on to the next stage but anxious waiting is unfortunately an unavoidable part of the process .
It must be very hard having the knowledge you do , sometimes having less information can be easier as you can to some extent stick your head in the sand and just concentrate on day to day . I hope you manage to have some positive time with your family over Christmas despite the spectre of your results in the new year .There are a number of triple negative ladies on the forum hopefully some of them will be along to chat . Best wishes Jill
Hi, I was also diagnosed with TNBC, in October and I’m the same age (52). I’ve had lumpectomy and reconstruction, and sentinel node biopsy. It can be a scary place cos you automatically think the worst as TNBC is a nasty one but there is a fantastic Facebook group just for TNBC which I’ve joined. Just search for Triple Negative Breast Cancer UK and Ireland (TNBC) Support. You can get loads of help on there and they are all very encouraging. I’ve just had my 1st chemo, perfect timing for Christmas. I’m doing ok (so far) and I agree the worst bit is the waiting to start treatment. Join the Facebook group and you will feel better.
I am 56 and was diagnosed with triple negative in October Stage 2 Grade 3. I started chemo last month and will be having 6 months of chemo along with pembrolizumab immunotherapy before my surgery. I have also to get another 6 months of immunotherapy after surgery.
I totally get how scary it is - I have a 32 year old daughter and 2 sons - one 26 and one 15. It has been very hard for them and for my husband
I think everyone is scared of what the future holds but my oncologist said she aims to cure me so I have to hold onto that thought.
I hope things go well for you, if you ever want to chat please drop me a message
I was diagnosed with grade 3 TNBC in February 22. A small tumour, clear lymph nodes, but vascular invasion found at the tumour site when I had my WLE. I set off down the standard plan of adjuvant chemo and radiotherapy. During my chemo I developed diverticulitis, had a CT scan, and discovered I already had a secondary deposit in my liver. I don’t think the risk of vascular invasion is treated seriously enough. If you are in a position to push for a scan it may be worth doing so.
In a similar vein, my TNBC is of the type that uses the PD-1/PD-L1 pathway to ‘hide’ from the immune system. Current NICE protocols authorise PD-1 or PD-L1 checkpoint inhibitors for qualifying metastatic disease, and neo-adjuvantly for qualifying disease with a primary tumour greater than 2cm and / or affected lymph nodes. Again it seems to me the criteria are too narrow.
Hi. Im sorry to hear you had secondaries. Your story does nothing to alleviate my worries, but the worries are there already, so it doesn’t make it worse either.
My CT CAP was clear but I haven’t had my head scanned. This is my biggest worry. I am looking forward to meeting my oncologist and getting a plan. LVI and PNI are independently poor prognostic factors in TN, I have read the literature. I agree with you that not including this criterion in staging protocols is unhelpful given that it makes more of a difference in these rarer and more aggressive types of bc.
On reflection, I think it was pretty ghastly posting this about your small node-negative tumour with LVI that led to secondaries, two days before Christmas, when I’m waiting for a plan.
You could have waited… I’m newly-diagnosed, not seeing an onc until January and trying to be normal for my shell-shocked family.
Seriously thinking about closing this account, while I have every sympathy with your predicament.
Hi I’m sure the poster replied to you with the best of intentions but sometimes it just doesn’t fall right . Sometimes we have to pause and think would what I have to say really help in anyway and if not then pass on by .
I hope you manage to have some peaceful happy times amongst the worry this Christmas .
I think when posting on forums like this, the questions to ask oneself are
‘Is this helpful or useful?’
‘Do I risk increasing this person’s anxiety?’
‘Is this appropriate to this person’s situation, today?’
If the answer to any of these questions is no, don’t ****ing do it.
I said I’m a doctor in the OP. I know how to push for a scan if I need one.
Anyone who is months post-diagnosis can still surely remember the awful shock of diagnosis, and the ghastly wait for a plan… and it is Christmas,for crying out loud. It’s really not that difficult not to be a complete a***hole is it?
I had no intention to hurt or make you feel worse. I feel the medical profession don’t take LVI seriously enough and wanted you to have chances I didn’t have because I didn’t push. As such, it was intended to be useful and helpful.