Newly diagnosed - scary

Hi, I was recently diagnosed with grade 3 breast cancer. I am having the cancer removed from the right breast and having a double reconstruction at the same time. As there are lymph nodes involved they are all being removed too. I was told I needed chemo and surgery as I was hormone negative. I went away in a daze and now waiting for my breast surgery. I’m getting very little info at the moment as they are waiting for more information to be gained from surgery investigation. On researching myself I can’t find anything positive for triple negative cancer! It’s scary, I’m so emotional yet trying to stay positive for my family. Does anyone have any advice or positive information for me.

Hi Karen. I don’t have triple negative myself but others will be along to support you. The general internet info on triple neg is honestly so out of date, stay away from it! When I was told that mine was ER positive I said to the dr “Oh that’s good right?”. She laughed and said yes but not as good as a few years ago. I started panicking and she explained that she meant triple negative isn’t the poorer diagnosis it once was, not that ER+ had got worse. 

Thank you for your response and your encouragement. It really means a lot x

Hi Karen, Strudel is absolutely right. Lots of the info on the internet is very out of date. A lot of the statistics are based on data collected over 20-30 years and you have to remember that treatment is improving all the time.

I was diagnosed with TNBC in May and have just finished chemotherapy.

I heard in the beginning that TN is twice as likely to come back as other types and totally freaked out…until I looked at the stats another way. Twice as likely also means the difference between 95% survival and 90% survival. Suddenly, the difference doesn’t seem so huge. We don’t have the benefit of the preventative drugs…but that means we also don’t have the side effects.

All cancers are different and although TN is often more aggressive, it’s not always. And anyway, even if it is more aggressive, chemotherapy tends to be most effective with faster dividing (more aggressive) cells. So there are always positives.

Hugs, Pookie.

Karen - I’m triple negative.  You’re not alone!  I did exactly what you did when I was first diagnosed and scared the life out of myself. However, being TN has a number of positives (1) chemo likes TN and eats it for breakfast!  The way that chemo is designed, it targets the fastest growing cells (nearly all TN is grade 3 which is the fastest growing), so your surgeon will tell you that chemotherapy is a great front line treatment for TN (2) the survival rates once you get to 3 and 5 years are much better than some other types of breast cancer.  So whilst you may be reading all the doom and gloom, you also need to look at the positives (difficult I know).  If you want to know more I actually put a website together because I was worried at the rubbish on the internet.  If you’re interested have a read here  or please join a newly created Facebook group for ladies in the UK with TN.  Search for Triple Negative Warriors UK and ask to join xxx

Thank you for the link ?? X

Hi Karen - I am triple negative diagnosed in October 2016 and undergoing chemo at the moment. You are right that Google can be scary so I try and stay away from it and use sites like this which are more up to date, real-life and positive. I agree with everything the others have posted. I have two little boys who are 3 and 4 and it is hard always being positive. But we are lucky to have family who at least force us to focus on them and stay grounded day to day. Take care and look after yourself.

Hi Karen

I am so sorry to hear your news.  I was diagnosed January 2016 with Stage 3 tnbc. Iam only 39 yers old and have a 10 year old daughter.  I thought my whole world collapsed! 

I had neoadjuvent chemo, right mastenctomy and radiotherapy.  I am so so fortunate that I was one of the one’s who achieved pcr so please please please take comfort from the fact that this diagnosis does not seem as scary as it first feels.  I pray to god every day though that I remain health as I know how lucky I am.

I done the worst thing possible though and googled everything.  Bad move!!  This information online is very generic and like all cancers this comes down to the individual and there response to the treatment.  I’m afraid as hard as it is it’s a waiting game for you just now.  Also don’t be overly concerned the hospital don’t overload you with information.  I think if they did, we honestly wouldn’t cope, so their most likely doing it with the best of intentions.

Take it one step at a time. Everyone is different and for me the operation and radio were the easy bit, I struggled with the chemo though.  It’s hard, I won’t kid you but believe you me, you can do this.  Take it one day at a time.  Get your family and support networks together and let them take care of you.  You will get through this cause there’s just not an alternative so you remember that and fight like hell girl.

Good luck and take care xxxx