Recently diagnosed with triple negative breast cancer

Diagnosed with breast cancer Recently diagnosed with breast cancer
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Hi All

firstly thank you for accepting me onto this forum 

Over the last two weeks I have been diagnosed with triple negative  breast cancer grade 3 I’ve not been told what stage it is. However I am being treated a primary breast cancer

im absolutely worried sick that my cancer had spread before I even start my treatment as I’ve been having really bad back pains and have a nagging cough

I was wondering if anyone had any advice on this.  the pain goes off when I take pain killers and it’s not constant  so I’m maybe over reacting 

I have been told I will have 18 cycles of chemotherapy and there is a possibility I will start on EC on a 3 weekly cycle and the go on to carboplatin and another drug which is picitel (not sure if I spelt it correctly). On a dense dose I meet my oncologist on the 3rd my nurse has advised this

I was wondering if any one could offer any advice on how it affects you  I know I will lose my hair which I think is a small price to pay if I can get better , however I am wanting to keep working has anyone managed it and any tips

sorry for multiple questions within this message any advice will be really appreciated 

thank you in advance x

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Hi,

 I am sorry you find yourself here and that I can’t answer your questions about your chemo treatment. I just want to say that I understand how scary it is to be diagnosed with grade 3 triple negative breast cancer. I was diagnosed with it on 5th August but my treatment for it has been different to yours. Most of my cancer was high grade DCIS with only a tiny amount of grade 3 invasive cancer so I was told I wouldn’t need chemo.

 I had surgery five weeks ago and luckily all the cancer was excised and it had not spread to my lymph nodes. I have been told that I will need radiotherapy but as far as I know before seeing my oncologist on 7th November I still won’t have to have chemo.

At no time here I been told what stage the cancer was at, I don’t think consultants in the UK do this. However my surgeon did say that there was no need to over treat me because it had been detected at an early stage and there was only a tiny amount of invasive cancer and he didn’t seem concerned at all that it was triple negative. I was recalled after a routine mammogram and had no external symptoms. 

I know it would be futile to tell you not to worry but do try to not let the worry overtake you. Your cancer has been found and is now being treated in the best way your care team feel is suitable for you so that is a good thing. Please do not try to find information about triple negative BC on Google, most of the information is out of date and not at all helpful. I hope you get through the chemo with minimal side effects. I am sure that someone on here who has been through the same will soon come along to answer your questions about the chemo.

I wish you well with your treatment, take care of yourself. xx

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Hi,

I’m at the end of my treatment for TNBC - got diagnosed in March then had 16 weeks of weekly chemo followed by an axillary clearance and lumpectomy - now awaiting radiotherapy.  I have to say the chemo (with Carboplatin and Plaxitaxel) was much better than I expected - yes I lost my hair and had various side effects, but it did the trick and I had a complete response - ie my 2 tumours disappeared.  

My advice would be don’t goggle anything on TNBC as the information is often out of date, try to focus on one step at a time, keep a diary of how the drugs effect you and juggle the meds they give you to suit you (I discovered that I had no need of the anti nausea drugs and was better off without them and the ensuing constipation!).  Talk to your oncology nurses and doctors about your worries of it having spread - I imagine you will have a CT scan and that will hopefully reassure you.  At each stage in this journey I’ve always initially imagined the worst, then realised it was nothing like as bad.  Hang on in there, you will get through it.  Xxxx

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Hi

I’m so sorry you have received this diagnosis. It’s a tough one. I was fairly lucky in that I chose (2018) to play ostrich and just let them get on with my treatment so I was spared 3 years of worry - I didn’t even realise one of my tumours was TN! When I skimmed letters, I only registered the hormone positive scores and no one ever mentioned TN to me - until I got a secondary diagnosis.

I fully endorse what others have said. Please don’t use Google. It takes you to territory where you are extremely vulnerable and not in a position to decide what’s what. The fact is, there has been a lot of progress in the field of TN, which accounts for about 15% of breast cancers and has been overlooked a bit in the past. It is not the fast track to the end that people still think. There are new treatments and new combinations of treatments which oncologists can now use. Don’t worry about those cells running rampant around your body. Chemotherapy will destroy those that your lymphatic system hasn’t scooped up. You are wise to steer clear of TN-specific forums for now. Maybe once you are more certain about your progress, you may find them a useful source of support - because being ‘different’ is quite lonely and people don’t understand the differences, unless they have to.

We all respond differently to treatments and experience has shown me that no one can predict how someone will respond to chemo. It’s not related to fitness, mindset, diet, age - just basic physiology. So keep in mind the intention to work but remember that, if it feels impossible, that’s not failure or weakness. It’s just a temporary response that, with time-limited treatment, will soon pass and you’ll be back on your feet eventually. If you’re in the UK, your employer must register you under the Disabilities section of the 2010 Equality Act. This will protect your employment rights and enables employers to offer flexible working patterns for employees undergoing treatment or living with cancer. Occupational Health or HR should be behind you all the way and you have access to Macmillan if you need advice or advocacy.

But do go easy on yourself. Now is the time to be looking at how to build on your resilience so you are in the best place to deal with the health anxieties you already have. Many opt for mindfulness or meditation, physical exercise, anything that can take your mind off intrusive thoughts. I swear by Progressive Hypnosis videos on YouTube. Most are linked to sleep but they can be used as a useful daily practice to focus your mind on soothing diaphragmatic breathing and reset your thoughts. I’ve used them for 4 years now!

It is easy to say and not easy to hear/read but acceptance is the fastest route to reducing anxiety and intrusive thoughts. You may be someone who will take almost a forensic approach to her treatment, reading every report and searching for further information in order to feel an active participant in your treatment. You may choose, like me, to play ostrich. There is nothing wrong with either approach but do remember, once you’ve read or heard something, it can’t be undone. If you ask for a prognosis, statistically it will not be great. But statistics are generalisations, not the reality. The reality is that TN is now dealt with much more successfully than even a decade ago. Remember that. 

I wish you all the best in your treatment. It’s not easy but it’s all manageable. Good luck

Jan x