Been told I'mTN today

Hello everyone, I had my first appointment with my oncologist today who informed me I’m TN. I knew I was er-, but not triple negative. Although my oncologist was a very nice lady, the 10 year survival statistics she gave me were quite depressing, yet both my consultants had been very upbeat about my future prognosis, saying that I’d be at my grandchildren’s parties! (I haven’t even got any yet) I’m trying to be positive, but actually I’m feeling down and frightened and finding it hard to forget to get the statistics she gave me. (I hadn’t asked for them btw) Sorry I’ve rambled on xx

Hi Jencat I am so sorry to hear this, it must feel like devastating news. So far I have only been told that I am ER- & I am waiting for the rest on my results next Friday. I read the statistics on your other thread. I didn’t realise these were the statistics for TN. Hopefully there will be some other TN ladies who can reassure you that they are doing okay & you will too. Sending love and the very best wishes for your next steps.
Scooter x



Oh mate I am sorry to hear about this, it is a lot to take in at the moment and it is the shock of it all, give yourself time to take it all in and you will get your positivity back.


Never ever think that you are rambling, we all get you and are here to help and support you in whatever way we can. 


Sending you a hug


Helena xx

Hi Jencat,


I’m another who is TN. Currently having chemo.


My oncologist told me that if I was looking at TN survival statistics, I should remember that these relate to women treated over 10 years ago. And that as a starting point, the chemo regime I would be getting has be shown to be more effective than the one(s) those women would have had.



Hi Jencat.

I’m also TN. Currently having my chemo before surgery. When I questioned my oncologist about it he was very matter of fact. He said not to Google it as the information was very outdated. He said that the main difference is that there is no ongoing treatment for us but that there is a massive amount of research going on into TN currently.

I won’t tell you not to worry about it as I know exactly how you feel as I felt the same when I looked up the survival rates on official breast cancer sites. I even queried whether it was worth doing chemo if it’s just going to come back. Luckily my friend gave me a kick up the behind about giving myself the best chance of being around for my family.

I feel frightened about my future too, it’s completely normal but I’m trying to focus on my treatment at the moment, one stage at a time. I hope that in time that you can come to terms with your diagnosis and start to concentrate on beating this.
Ali xx

Hi Jencat, my chemo is going ok thanks for asking. 10 days post chemo 3 and just starting to feel better.

The reoccurrence rate really worries me too. It’s constantly in the back of my mind that I could be going through all this again within the next few years. I’m not sure yet how I’m going to cope with that going forward.

Your onc shouldn’t have told you the information without you asking and its good that you told her how it made you feel. Maybe it will save another poor lady from recieving unwanted information.

My onc is the senior head of my unit so I was a little reassured when he was so matter of fact about it. In fact he actually said that it was better than another type of tumour (which I won’t mention in case any ladies reading this have that diagnosis) as that type is much more aggressive. Regarding the research he told me that they have more or less done all they can with hormone positive cancers so all the focus is now on improving treatments for TN.

I’d be interested to know which extra drug you are getting so that I can ask my onc about it xx

Hi Jencat. How are you doing now? I have my flu jab on Saturday, did you have any effects from it? It was nice of the nurse to comfort you but I don’t agree that the consultant had to give you the information, mine didn’t. If you had asked then yes they had to tell you but you didn’t!

I worry about reoccurrence too. I keep thinking could I go through this chemo again if it came back and would it be caught in time. But most of the time I try and push it to the back of my mind.

When do you start chemo? I hope you are staying away from those buses lol

Jencat, glad the flu jab didn’t make you poorly. I was a bit concerned it may give me flu like symptoms.

To be honest, now I have started my chemo my head is so full of looking after myself that everything else has been pushed to the back of my mind. I do sometimes think about it, especially when hubby and I are discussing the future, I wonder if I will still be around. It’s hard isn’t it.

So far chemo has been doable. It’s hard at times but I have had more good days than bad so far. You just need to look after yourself. I did get letters sent with my appointments. I met the nurses on the Tuesday before my chemo on the Thursday. There was a generic group powerpoint about chemo and side effects, checking temp etc and some leaflets. Then a one to one with a nurse who went through my specific drug combo, cold cap etc and then they did bloods, height, weight and blood pressure. Then there was a visit to focus where they gave me loads of mcmillan leaflets, a car parking pass and made me an appointment with the wig lady.

Hopefully you will get your date soon xx

Hi ladies, I’m triple negative too.  It’s been a week since I had this particular news and had first chemo session yesterday. 


I’d already gone into DEFCON 3 mode when the first cancer diagnosis was confirmed 3 weeks ago. Went through every pile of papers, every trinket box with the strange rubbish I’d been stuffing in there for years, re-read letters from old boyfriends, chucked out SO much stuff over days and nights of compulsive sorting. The reason for doing this, of course, was because in my head was the “This is it” moment. I even made keep-sake boxes for the people I love!


Now things have sunk in a bit, including the TN information, I’ve reached the view that I am where I am.  There’s nothing I can do to alter the diagnosis but I CAN change how I respond to what it will bring.  It’s a bit like having a toxic colleague in the workplace - you can’t change their behaviours, you can only change your own, and while I’m not thrilled with the immediate prospect of 20 weeks of chemo, I’m going to try not to look round too many corners for the middle or long-term, including googling any data. That could change, of course, but the up-side for right now is that I have a very tidy house! 


The first chemo session was so much better than I’d been expecting, although it started off strangely.  When I walked into the reception, we did the usual ritual of name and DOB, then the receptionist said, “Blah blah area, take the first left, Chair 21.”  I must have looked very confident (like someone else?) but  she hadn’t clicked I was a newbie.  Once we got things back on the right foot, I plonked down in Chair 21.  Everything was going swimmingly when, just before the cannula went in, they realised I hadn’t been given the anti-emetic that I should have taken an hour before the appointment. No one had told me about this or given me the medication!  So, pill popped, I twiddled my thumbs with my arm snuggled into the heat-pad-thing for an hour before we got down to business.


It was all completely fine. Lots of lovely eye contact from the nurses, lots of explanation and some intriguing tips based on their experiences, eg, “if you have a favourite perfume you wear regularly, try swapping it out for something new while you’re going through the treatment process.”  Something to do with emotion, memory and smell, I think.  Anyway, it’s the perfect excuse to buy a new fragrance! 


Also, when the various drugs (epirubicin, which makes your wee go pink for a bit, and cyclophosphamide) were going down the tube into the cannula, I was told I might feel certain fleeting sensations, such as tickly backside (?!), a taste of black pepper at the back of my nose, a sudden headache down my nose and across my eyebrows.  When none of these things happened - very disappointing, especially the tickly bottom - my friend and I got a fit of the giggles and I kept bending the tube, which made the machine start beeping. The nurses were very patient and good humoured about us cackling away in the corner.  Thank goodness we were the only ones there by this time.


Last night and today have been fine.  I’m a bit tired, a bit spacey, and there are lots more anti-nausea pills to take than I was expecting. This could have been because, based on some advice on one of these brilliant threads, I kept saying “I’m a very sicky person, I’m a very sicky person!” so someone must have written it down.  The irony is that I missed one earlier because it was 30-60 mins before a meal and I forgot, so am off to buy a cheapy dosette box in the morning.


So after all that jabbering on, I guess the TN thing is really an extra card to hold in our cancer hands. It might mean something, it might not. I’ve been looking into some counselling options provided by my hospitals/Macmillan and there’s also a specialist centre fairly close by which runs lots of services re cancer support.  It might be a good space to talk through some of the feelings I don’t want to lay on my loved ones.  Just waiting to see if any of that nausea turns up in the next few days before I start ringing for appointments!



Hi Sue, it’s great to hear that you have such a positive attitude. Like you I look at it that it is what it is and I can’t change it but at times the gloomy thoughts creap in.

Glad your first chemo went well and you kept your sense of humour. The nursing staff are great aren’t they, so reassuring. I’ve heard about the perfume thing along with people throwing the clothes away they wore to chemo.

I got the bunged up nose thing once but not the bottom thing (my nurse said it’s more like an itch). It’s all to do with how fast they push the drugs in. Hopefully they told you that the c bit can linger in your bladder so you need to drink loads to flush it out - and the pink wee lol.

The councelling thing sounds like a good idea. I think I might look into that myself.

Hopefully you won’t get any nausea if you haven’t already, it’s usually pretty quick to start. Take care of yourself and get lots of rest. The spaced out feeling goes pretty quickly but the tiredness can linger for longer.
Ali x

Great that you told your onc how you felt, Jencat. Hopefully she will be more thoughtful in future. Apparently TNBC often responds well to chemo, so that is a positive.


I’m being treated in a clinical trial that adds olaparib to 4 cycles of carboplatin and paclitaxel (weekly paclitaxel and 3 weekly carboplatin with 12 days of olaparib) and is then followed by 3 cycles of EC. I’ve had the carbo/taxol/olaparib and the first EC. Definitely got a good response to the first 4 cycles but less sure about the EC. I’m having chemo before surgery.


I had been warned that the cyclophosphamide might make me sneeze as it went in, but it didn’t though my nose did itch…



Morning all. I feel a bit left out Jencat and Eliza as I’m only having FEC-T and nothing else!

Jencat, one of the first things both my surgeon and onc told me is that TN responds really well to chemo. So well that my surgeon sent me to have a marker put in the lump so she can see where it “was” when she does surgery as she expects it to completely disappear. I’m having an ultrasound next week so we shall see if it’s shrinking as expected.

Regarding the F part of FEC, I asked my team about it after CKs post. They said that there are as many studies that say that the F helps to make the other 2 drugs work better than there are that say it’s not needed. It depends on which side of the debate your onc falls. She also said that they have people who are only on F and the side effects are minimal so try not to worry if you are having F.

Have you had your appointment yet Jencat? Sue, Eliza - hope you are feeling well after your treatments xx

Hello all!  I’ve had a good week 3, with no additional meds to take, which has given me much more energy. 


The reason why why olaparib isn’t standard is because as yet there is no absolute proof it enhances the effect of chemo, so it is not yet approved for use in treating early breast cancer. The trial I’m in is looking at whether it does and also when it should be given. I’m in the arm that starts it 2 days after the carboplatin and another arm starts it 2 days before.


I’m not having the F with the EC. My onc implied that I would have had it if I hadn’t had the carboplatin. I think she does either carbo/taxol + EC or FEC + T.


I’m due to see my surgeon late Monday morning  to see if he thinks it has responded well enough for surgery (onc thinks it has). Then the next EC in the afternoon, so a full day at the hospital.


Wishing us all a good weekend. Eliza xx

Hi all

Eliza, thanks for explaining about the olaparib. I don’t think my hospital is taking part in any trials. I hope your surgeon has good news for you on Monday.

Jencat, glad you’ve got a date now. I’m sure you are apprehensive about starting but you can do it. You will feel better once you have had your introduction meeting on Thursday. When having the chemo itself you will have a nurse with you all the time as they have to administer the E by syringe. So you can ask any questions and have a chat with the nurses who are all lovely.

As for after chemo. After the first one I felt well quite quickly, within 3 days I was back to normal. I was lucky not to suffer with nausea however I did end up in hospital for antibiotics overnight on day 10/11 as I had a temperature. After my second I had fatigue days 5 to 9 so doing anything was very tiring. My third has been a bit of a struggle. I’ve just felt unwell and had mild nausea day 4 to 10. I’ve put this down to a cumulative effect. However Jencat, when I say I felt unwell it’s like the end of a virus you can’t shake so have to take it easy and rest more. I’ve not been confined to bed and I have been out and about doing normal things from about a week about after each one.

Caroline, thanks for that. I was wondering how long after it would take to recover, especially as I am having surgery after my chemo.

Ali xx

It’s different for everyone.

If I wanted to stay in bed I did and if I wanted to go shopping I did.

I also did gardening & housework as I felt up to it.

I did not want visitors too often so I refused some of them.

Be kind to yourself and take every day as it comes.

best wishes


Jencat, I’m having 6 in total. Had 3 FEC so far. I’m supposed to be having my first T on Thursday but I have a cold so it depends on how I’m feeling as to whether I have it.

How are you feeling about your appointment on Thursday? Hopefully you will feel better about everything once your treatment starts xx

I picked up a booklet about genetic testing ‘cancer genetics, how cancer sometimes runs in families’. It’s a macmillan booklet.


Another thought… The carers suffer as well as us. I think my DH is rather traumatised by it all. The carers need sympathy as well as the sufferers.

Ladies, have any of you been referred for genetic testing? From what I’ve read I thought I would get tested automatically as I’m under 50 and TN but spoke to my surgeon today and she didn’t think the NHS would fund it. She’s going to refer me anyway but suggested I could go private but that’s £1500.

Also I had a bit of good news today. My lump has shrunk from just over 2 cm to 1.5 cm. I was hoping it would be smaller but at least it’s shrinking and not growing. Surgery is booked for 18 December if my chemo stays on track.

Hope you are are all doing ok xx

Morning all.  I was offered the gene test (although I’m 52, no kids) - now waiting for the results, which I was told took up to six weeks.  After chemo (ECx4, Tx4) they foresee lumpectomy then radiotherapy, although the surgery stuff could always change depending on the BRCA findings. Ho hum!  xxx

Good shrinkage, Ali; that is very positive. I too have had a good response to chemo and so have other people in my trial (including those in the control arm), which does bear out what they say about triple negative responding.


I saw my surgeon and have a provisional date for surgery of 15th November, which will be just over 3 weeks after my last chemo is scheduled.


I have had BRCA testing through the trial and there is a bit of family history including ovarian and prostate cancers, but it came back negative.


Eliza xx