Any experience with triple negative breast cancer?

[ImpossibleDrear]

My mum (73) has just had a successful lumpectomy to remove a stage 1 tumour. Analysis showed it hadn't spread and they got it all (thankfully), but that it is a triple negative cancer and grade 2. She is seeing the oncologist in a couple of weeks to be offered chemo which she will almost certainly take.

For various reasons I'm trying to get a picture of what might be involved in supporting her, because I don't live near and have health challenges of my own, so I just have a few questions if people don't mind sharing.

1. She asked the breast nurse about hair loss and the nurse said, 'Oh you might not lose your hair, wait to speak to the oncologist.' But the macmillan website says that the most common chemo drugs for triple negative cancer usually do cause you to lose your hair?

2. I guess chemo can affect people different ways in terms of when you will feel particularly tired and sick, but is this something the oncologist can predict when they decide what drugs to use? or is it a total guess?

3. They said she isn't eligible for genetic counselling since there isn't breast cancer in her family background but is this something we should look into privately (for my and my dd sake!)?

Thanks so much - I might have more questions as I think of them.

Hi there, I have TNBC currently, hope I can help.
Same as your mum, early stage.
I have had chemo first and awaiting lumpectomy then radiotherapy.

1. Hair loss certain with the drugs but cold capping can reduce it. I have kept about a third overall. It is uncomfortable but worth it.

2. Extreme fatigue with the first round, worst with EC but the nausea was bad. However after a few days you feel ok again. There will be times where she cannot drive and will need a bit more care.

3. I managed to get genetic testing. Privately it costs about £1500. It gives you information and choice. I would advise anyone to get it done.

I’m sorry your mum is going though this. It is tough. Do message me if you need anything more specific or if she would like to talk to me. It is scary but every experience I have had has been not as bad as I thought. All nurses and doctors wonderful and have managed to laugh through most of it.

Thank you so much, I'm a bit teary reading your reply. I'm sorry you are going through this 💐

1. I will suggest cold capping to her and start to research a few local options for her with wigs, turbans, etc.

2. What is EC? I wonder how long after the treatment before fatigue started and how long it lasts. The complicating factor is that she is a carer for her husband with Parkinsons. She has (finally!) got a few professional (lovely) carers she can call on but it would be good to have an idea of how much they might be needed. Also, how many weeks/months of chemo is likely?

3. Could you tell me where you got your testing done? My mum has dealt with an awful lot over the last year and I have realised it is best if I sort of predigest some information for her so she doesn't get overwhelmed.

Like you, mum is very happy with the care she is getting. It is just so much to take in and so many decisions to be made.

I was diagnosed with grade 3 TNBC nearly 2 years ago. Had chemo then a mastectomy with immediate reconstruction then chemo tablets. I didn’t need radiotherapy because my nodes came back clear after surgery. I used a cold cap and lost maybe half my hair but was very glad I did it. I was given the genetic test despite no family history - I got the impression it was standard with triple negative. Unlike a PP I wasn’t nauseous at all with the chemo - it’s different for everyone so definitely not a given that your mum will feel awful on it.

Thanks so much @MadamBuxton Her lymph sample node (?) came back clear after the lumpectomy but they are still recommending chemo.

From the little I have read about who tends to get TNBC, I would have thought BRCA testing would be totally standard but they said they wouldn't do it for her.

So glad to that nausea isn't a given!

Hi, I had 12 rounds of a mix of paclitaxel, Pembro (immunotherapy) and carboplatin to shrink the tumour.
Then 4 three weekly cycles of epirubicin; cyclophosphamide to kill any rogue cells.
Those were the hard ones.

Check4Cancer did my gene testing. They took about four weeks from sending off the kit. They interview you about family history then do the blood tests. Very gently and sensitively done.

I also attended a recent webinar by the leading TNBC specialist who talked about how brilliant patient outcomes are now and have improved so much over the last 20 years. It’s a cocktail really per patient to get the balance of drugs right. I was really heartened by listening to what was said.

There is an also a book: “A Trip with Triple Negative Breast Cancer” which is very informative and an accompanying Facebook group for support which is comforting for some and full of information.

Also the BRAC genes being present is in a tiny percentage of all breast cancer patients, even TNBC. But it is useful and reassuring information nevertheless.

Thanks so much, @MeOldBamboo . So reassuring to know outcomes are improving!

I've emailed Check4Cancer - thanks for that.

I will tell mum. about the FB group - she'd probably find that easier to manage (emotionally and practically) than any in person support groups.