Triple Negative Grade 3 Stage 3 63 year old

Hi,

My mum was recently diagnosed with triple negative breast cancer. They found that it’s grade 3 and has gone to her lymph nodes. They also found that one of the lymph nodes in her internal mammary chain was swollen. They’re currently investigating (they did a PET scan yesterday) to check if it is indeed cancerous. I’m so anxious because the doctor said that if it is cancerous that would make her cancer stage 3. It made me so distraught hearing that. I’m also severely anxious incase they say they found something else.

My mum’s CT/Bone scan seemed OK. They didn’t find spreading elsewhere so I’m really praying that the PET scan picks up the same thing. I’ve never been so anxious in my life because I know just how aggressive triple negative is.

She starts neo-adjuvant weekly  chemotherapy soon. A mixture of AC, Paclitaxel & Carboplatin. They’re also suggesting immunotherapy (Pembrolizumab). I’m so scared about the treatment & worried about mum.

The breast lesion she has is only 2cm large but it’s big enough to spread & cause swollen, cancerous lymph nodes.

if anyone has also been through similar diagnosis please may you give me some guidance

Hi C

I’m so sorry to hear about your mum’s breast cancer. Until you get used to the language of cancer, it can be terrifying for loved ones as well as the person going through it. They have to deal with the practicalities while family are left with their imaginations in overdrive, frantically googling (the last thing you should do)  and getting scared witless about the dire prospects for triple negative cancer, how even worse it is if it’s in the lymph nodes etc etc. One of my tumours was triple negative and I belong to a facebook group specifically for women with TNBC and there are women there who have had the diagnosis for a decade or more but are contentedly NEAD (no evidence of active disease). The results of the CT scan are good, suggesting the lymph nodes have done their job and held onto the malignant cells. Treatment should take care of it all. 

This is a frightening time so your mother is going to need you to be there for her, calm and reassuring, maybe accompanying her to appointments and sitting in the background taking notes, as a friend did for me. There is support available to families and if you have access to a Maggie’s Centre, I’d strongly advise you to visit them for a chat. The nurses’ helpline here is fantastic - they are very good listeners and can answer your questions. But the best people to ask are the oncologist and your mum’s breast care nurse. However, I really would advise you to let your mum take the lead, definitely not push her into asking questions about things she may not want to know. And please never ask a question in front of your mum without discussing it with her first.

As regards her treatment plan, chemotherapy, followed by radiotherapy, is standard practice. Immunotherapy will depend on specific blood test results. Chemo is not pleasant but does get easier and, as most of us here would say, it’s completely doable. There’s a lot you can do to support your mum, like putting together pamper packs, arranging treats (even if it’s looking at old photos), making her wig-trying session great fun (as my goddaughter did for me), maybe helping her put together a chemo bag for treatment sessions (it will get lighter as you learn that there’s rarely time to do what you expected to do and often things you can’t do if wired up to a machine that bleeps if you so much as blink!). You could clue up on these (and the overnight bag for emergencies) and advise her but again, let her take the lead - it’s her illness.

Your mum may have days when she’s pretty poorly. She may need practical help with cooking, even eating at times (taste changes and most foods taste vile). She’ll maybe want company when she goes for walks - but there will be times when she may prefer to be one her own. It’s her illness.

One piece of advice from bad experience. Make sure your mum has 2 thermometers that tally, one as back up. I bought a new thermometer for chemo and, when it was needed most, found it was reading over a degree lower than reality. Result - hospital for 4 days! The Braun ear thermometer is a good investment with a cheaper one for checking? Just a thought.

I do hope everything goes smoothly for your mum and you get the support you need so you can be the cool, calm ad collected support she will treasure.

Jan x