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Triple neg secondary BC

3 REPLIES 3
Nurse_BCN
Moderator

Re: Triple neg secondary BC

Hello Kara16

It is completely overwhelming hearing of a parent's diagnosis of secondary breast cancer. It can be hard to know what to think, where to turn to for support, and hard to find anyone who really understands how you’re feeling right now. It is normal for people to experience difficulties like being unable to eat and sleep. There is support for both you and your mum to help with physical and emotional wellbeing, so you don't have to feel alone at this difficult and worrying time.

Whilst secondary breast cancer cannot be cured it's important to remind yourself it can be treated. There are newer treatments for triple negative breast cancer including targeted treatments as Jaybro mentions which have made a positive difference for many like your mum. These aim to control the cancer, relieve any symptoms, and maintain health, wellbeing and a good quality of life for as long as possible. Remember that each person’s case is different and no two cancers progress in the same way. As treatments have improved, more and more people are living longer after a diagnosis of secondary breast cancer 

At times like this, some people find it helpful to talk about how they are feeling, and what they are experiencing both physically and emotionally. You may find it helpful to talk to family members or friends about how you’re feeling. Much support can also be found by talking things through with your GP and your mum's treatment team. Through local cancer complementary therapy services  and cancer information centres such as Maggie Centres you and your mum may be able to access counselling and supportive services, they can often offer you both emotional and practical support as they have wide range of services. You can find further signposts to helpful organisations on page 87 of our Secondary breast cancer information pack.

We also offer a range of free supportive services that you and your mum might be interested in.

Our Helpline  team are also here for you both, so you don't have to feel alone as Jaybro says. They have time to listen to your concerns, answer your questions, talk things through and signpost you to more support and information when necessary. 

Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

If you would prefer a nurse to call you do complete this form. Ticking the box agreeing to a call back.

Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.

We will be closed on Thursday 2 June and Friday 3 June due to the bank holidays. We will be open as usual on Saturday 4 June.

Best wishes

Helen

Breast Care Nurse

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This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.

kara16
Member

Re: Triple neg secondary BC

Hi Jan,

 

Thank you so much for your detailed answer, and it's great to have someone reiterate the fact that Dr Google shouldn't be relied upon and current data is out of date. My mum had Stage 3 BC 6 years ago so is well versed in chemo and radiotherapy. She is determined to be positive and will do whatever she has to. She is lucky in having a great Oncologist who she has remained seeing during the last 6 years that she really trusts. Thank you for the FB page recommendations I have looked through them and they have given me so much hope and inspiration. I just wish I hadn't wasted hours and hours trawling google! Starting to feel a bit stronger today and seeing more clearly.

It's great that you are 15 months in and on your 1st line, I wish you many more years to come.

Kara xx

Jaybro
Member

Re: Triple neg secondary BC

Hi Kara

Sadly, searching on the internet when you don’t really know what you are looking for is almost guaranteed to make you feel worse. Google results are mostly out of date when it comes to cancer, deal with generalisations or specifics not relevant to us and generally scare the wits out of us. If you have questions, seriously, keep away from Dr Google and ring the nurses at the number above - they offer a wonderful service - or one of the other respected cancer groups like Cancer UK or Macmillan.

I too am Stage 4 triple negative, diagnosed in March 2021. I knew the prognosis wasn’t good but decided I didn’t want to know. However, I do belong to carefully selected support groups and I’ve learnt things along the way.

1. Your mum’s cancer will be unique to her so what you read about TNBC may not apply to her. There are proteins and mutations and all sorts of things that may or may not act in her best interests, give her access to trials of new treatments or deny her certain treatments. There is no point in going through chemo misery if the drug doesn’t match the cancer.

2. Treatment of TNBC is moving quite rapidly right now. Last week NICE ratified a new drug, trialled successfully for TNBC - but when I researched it, it’s first line treatment only and you have to have the right PDL-I result (not sure if it’s positive or negative but I know I’m the wrong type!). Currently there is a lot of controversy about Trodelvy, specifically designed for TNBC. NICE is in contention with the manufacturers over cost and is ready to refuse to endorse it. Patients under NHS Scotland already may have it, trial patients here may have it but it’s possible new patients won’t. That is where TNBC does get scary - when you realise that the cost to the NHS is more important than your life. Being reduced to a statistic is crap! However, maybe NICE will change its mind in the face of the big campaign this charity has fronted. Who knows?

3. Who knows is maybe the most common opinion in the field of TNBC. There are no specific hormones to guide oncologists towards the best treatment so, to be frank, it is hit and miss, trial and error, whatever. Sadly, we patients are at the mercy of our oncologists so it is VITAL that your mum gets the oncologist she respects, trusts and maybe even likes. Stage 4 patients are entitled to choose the oncologist they wish to be under for continuity (though they all work in teams anyway), so make sure your mum is aware of this. I have a lovely oncologist and I trust him implicitly. It’s a bit annoying when he shows my husband more concern than he shows me but I think his assessment is right. I’m coping fine, my husband isn’t.

4. Who knows? Do steer away from prognoses until you have to. Frankly, they are out of date. Accepting that this is a condition for which there is no cure is not the same as expecting to be dead in months. Many diseases are incurable - people manage them. This is how we should see Stage 4 TNBC - something to be managed. Unpleasant, frightening but not an immediate death sentence. This is why the Emmerdale storyline right now annoys me. The character is focusing on death. There is more to TNBC than that. There are women who have lived with Stage 4 bc for 10, 15, 20 years. The triple negative kind of ruins that bit of encouragement but prognoses are just statistics and there have to be exceptions to the rule, Taking one day, one week at a time makes things a lot easier to handle.

5. This is your mum’s condition and it’s important people take their cues from her.  She will know how upset people are and it would be crazy to try to hide it but all decisions must be hers. If you feel she’s in need of support, support her but please don’t impose what you think is right onto her. She may choose to be a bc warrior, a bc wimp, something in between. She must decide how much she wants to know. Some people analyse scan reports almost forensically - it helps them feel they are in charge of their bodies; others, like me, prefer to play ostrich. It isn't denial, it’s more acceptance and leave the worrying to the experts. She may need a lot of support as she goes through treatments (there is rarely a break and treatments aren’t pleasant), she may be fiercely independent. Just take your lead from her, be gently encouraging and always be there for her. This is a very isolating condition. People may know the facts but that’s all they are - facts. To us, they are our reality.

6. Don’t let your mum feel guilty. It happens a lot - guilt that you’re causing loved ones pain. It’s irrational but… who is always rational? Gentle reassurance is probably your role (even if it means concealing your fears), as well as loads of practical support, from taking her to appointments, making notes because it’s hard to take everything in, to making sure she stays as active as possible, is on the right diet (a ‘healthy’ diet is not always the right one now - some chemo treatments require a bland, almost a white diet!), takes all the daytime naps she needs and listens to her body. Chemo fatigue is like nothing else!

I don’t think I will have reassured you because it’s a fact - TNBC can at best be managed but not cured and right now I’m pretty certain you would give anything for there to be a cure. But your mum may have several good years ahead. Live them to the very best. And take care of yourself too - find out if you have access to a Maggie’s Centre or access them online. Look for support for family and friends, as well as support for your mum - and you DO have to look, it’s not often hospitals will signpost you unfortunately. Mental wellbeing is essential for everyone - mindfulness, n meditation, running, walking, whatever rocks your boat. For me, it’s plugging into YouTube videos by Progressive Hypnosis. They have soothed me through the last 4 years and I’m off to plug in the earphones now, my daily meditation/nap lol.

I wish you and your mum all the best. She’s lucky to have someone to help her along.

Jan xx (15 months and still on the first treatment so definitely belying those statistics).

PS. There is a very good Facebook group - Stage 4 Triple Negative Breast Cancer (UK and Ireland) - which your mum might like to consider once she’s come to terms with what’s going on. It is full of personal experiences, good and bad, mutual support, love and comfort, as well as information. I can also recommend Stage 4 Deserves More and Make 2nds Count, though these are not specific to TNBC. Still great though.

kara16
Member

Triple neg secondary BC

Hello, 

My mum has been diagnosed with triple negative secondary breast cancer. I can’t sleep or eat, I’ve spent hours and hour looking at forums and websites but can’t seem to find any positivity. Is there anything I can cling on to? I’m so sad x