Recently diagnosed triple negative and terrified

Hi all, I was diagnosed 2 days ago with triple negative breast cancer. I found a large lump on the upper side of my left breast and went to doc, I was in the hospital within 8 days having mammogram and biopsy. They expected it to be a sist as that’s what it looked like and it wiggled so apparently that is not usually what they feel. Unfortunately for me it’s not and its 3.5cm. I am having a metal clip inserted into lump today and they are checking lymph nodes. Next is mri and ct. They say I will begin chemo asap with surgery later.  Like most people I was so shocked I couldnt take in what he was saying… I heard negative estrogen, negative something else and negative hormone. I like a thick thought this was good, like negative is good. Well jesus I got on to dr google and that was the end of it. Had myself dead and buried. I have 4 boys from 18 to 10. The hardest thing was telling them. They’ve been great but my teenagers are taking it bad understandably and boys are more difficult to get talking. I find the car is best because they dont have to make eye contact so they always chat better in the car. They are not used to seeing me sensitive and crying and I’m a complete mess, cant help it. Thinking, should I be going on days out with them now before I start chemo? Would appreciate advise on this as I dont really know what to expect from chemo or are u able for things while having treatment. So grateful to have found this site. 

Hi Sharon

I’m so sorry you’ve had this diagnosis. You must be reeling from the shock. This is quite normal. Unfortunately at the moment, you can’t get what you most need - a big hug from a trusted friend. The language of cancer is very frightening. Words like aggressive and invasive get bandied around and we’re stuck in the middle. Personally, I decided to leave it all to ‘them’ and, 19 months on, I can’t tell you off the top of my head what I had. What difference does it make to me, except to send my imagination into top gear?

It’s not too late to advise you to put a ban on Dr Google, as it tends to be known as here. Search engines really cannot be relied on and self-diagnosis can be disastrous. Each cancer diagnosis is unique so, even though you now know what implications there MIGHT be in having a triple negative diagnosis, you don’t know if it applies to your unique circumstances. Google generalises, is often outdated or is couched in specialist language almost guaranteed to send our blood pressure soaring. It doesn’t take into account that we’re vulnerable human beings and doesn’t care either. If you’ve been assigned a breast care nurse, she is your first port of call for any information you need. The nurses at the number above are incredibly supportive and understanding and I’d recommend that, if you can’t get hold of your bc nurse, you ring. You need to get things put into context, something Google can’t do. As my bc nurse said when I confessed I’d googled something that terrified me (the only time I did it and it proved I’d been right all along to avoid it) what’s read cannot be unread!

So from now on, make a pact with yourself to avoid searching for answers online. Ring the nurses, ring your bc nurse, ask in the forums - we all understand there’s a human being with emotions behind the questions, unlike Google. It’s great that you’ve been able to tell the boys so early but it might be an idea to suggest they avoid google as well. Instinct is to want to know more and the answers are usually at their fingertips but this is one time when it’s a bad idea.

As regards the trips out, chemotherapy can be a difficult time and you want to make the most of the days before it starts and the time you have (temporarily) to put them first because, believe me, once you start chemo, you have to put yourself first. The last few months of lockdown will be a good preparation for you. Personally, I’d ring the nurses (or your bc nurse) and get a medical opinion rather than rely on what we in the forum think. We have personal experience but we are not a medical resource. 

I can tell you that, again, each person’s experience of chemo is unique. I was laid flat by it and some days could barely get out of bed. I have a friend who carried on with her part-time job and only had the occasional day off and another who has rarely taken to her bed. You wont know till you’ve had your first treatment. You have to be on the alert for any source of infection all the time and the best indicator is your temperature, so you’ll be advised to take your temperature daily and follow the advice your hospital gives you. I’d go further and say get two thermometers, one as a back up, and check they are accurate. My new thermometer gave false readings and so I delayed contacting the hospital when I had a streaming ‘cold’ and ended up being admitted with infection. It turned out my 37C was above 40C.

You have your scans to deal with first so your team won’t yet know exactly what your treatment plan is. Once you know, you can ask us what to expect - but we’re all different. We’ll be great on practical tips though! Meantime, look for ways to get some reassurance. A phone call today to someone who KNOWS would be very helpful. Think too about methods of relaxing, whether you can go for a run, meditate or, like me, rely on YouTube videos. I plugged in to Progressive Hypnosis’s Manifest Healing repeatedly and it helped me tremendously.

Recovery rates from breast cancer are getting better by the year. Ignore the tv ads that tell us how desperate things are. You’re embarking on a very thorough and intensive investigation and treatment plan so trust your team - they’ll get you through it. It’s all manageable, honest. I wish you all the best for the future. Take very good care of yourself and go with the flow as far as you can.

Jan x

Hi, I have just been diagnosed with triple negative and like you terrified…can you tell me how you coped or are coping and any thing about your treatment xxx