I was like you Rhian, nothing on mammogram when I went for my annual check up a few months before I felt a lump and even on ultrasound it was considered to be possibly another cyst. It was only the presence of a lump in my armpit that led to the biopsies being done. I’m finding the radiotherapy really strange. My lymph surgery area is really painful and wearing a bra uncomfortable. My skin is ok so far. I’m slapping on the aloe Vera gel and using aqueous cream as well. Now I’m on the booster doses for two weeks I may start to feel the burn! I’m struggling with my arm at the moment so referred for lymphodoema therapy. Even with sunscreen on I find it burns really quickly.
Tracey, I’m scared witless of it coming back as well which is why I’ve signed up for the REACT trial. I don’t feel I’ve got anything to lose really unless of course I end up with the placebo not the drug! Lou x
Hi All
I have been reading your thread as I too was dx with triple neg in January Had WLE and axillary node blue dye sample. No node involvment but had intermediate DCIS 1cm away from main lump that was removed also. Main lump grade 3 IDC? What I do not understand is neither my surgeon or onc have really said anything about the fact that I was TN All surgeon said was " Your cancer is not responsive to hormones" nothing else mentioned It was only after coming on this site I realised it was something a bit different!! I am on 4 x EPI (2 down 2 to go) 4 x CMF and 20 rads. Have the rads planning on 21/6 so I think they are going to do these alongside the CMF does that sound right?? I am a bit of a wimp when it comes to asking questions of the experts sad I know but always believed they know best??? Maybe I need to get a back bone and demand some answers.
Sorry for the essay but would appreciate any info
Many Thanks
Jill
Hi Jill
I think it is quite common for BC specialst not to use the term triple neg, my Onc never used the term, and i have recently transfered to another group of medics and they also don’t seem to use the term.
The ‘experts’ can be rather intimidating but usually if you do ask questions they will repond. Maybe make a few notes beforehand and take the questions you have in with you.
rhian xx
Hi Rhian
I will do that thanks It is nice to know that my ‘people’ are not the only ones to use the TN term was beginning to think there was something they weren’t telling me!!!
Jill x x x
Hi Tracy mine was about one inch and 2 inch I had 2
maybe that’s why I had tax yes it’s v scary but like most ladies on here some don’t return my onc didn’t mention tn either I didn’t no till I saw onc when was dx for sec was v scared and still am but have got to stay positive kp us posted tc laura xx
Just to let you all know that I had my oncology appt today [4 years since end of chemo 4xfec and 4xtax]and I was ned.
hang in there all of you
valx
Good news Val x
Hi Ladies
Seen oncologist today and he made it very clear FEC x 6 was the standard treatment for TN with no node involvement. After more questions from myself he stated the guidelines and research shows TAX offers no other benefit than FEC, if your nodes are clear. So it is FEC for me. Some oncologist obviously think differently, and that would explain the random prescribing. All this does is bring anxieties for everyone. I feel better about it after discussing my concerns with him, but think people would feel more confident if treatment was more consistant UK wide.
Jo x
Hi Jo
Glad you are re-assured. I guess we are all very different and a one size fits all approach wouldn’t be helpful. No node involvement hopefully means that they’ve got it early and the FEC will do it’s job. Keep positive (easy to say I know). Good luck with your ongoing treatment. Lou x
That is interesting-I’ve never heard of just fec for tn-its usually E-CMF or fecT but guidelines change all the time and we have to trust our medical teams to do their best for us.
Valx
My wife was diagnosed at Christmas with grade 3 TN with 6 nodes infected and spread to nodes in her chest. She had a PET scan at the time, which confirmed the Cancer spread, a terrible time for her and us!!
She was put on a course of 4 AC with a potential of 4 FEC after. She has completed her 4 AC treatments and we have just had the results of a PET scan she had last week, there is no evedince of cancer where previously identified, the best news we could have wished for.
The onc has said that because of the response she has had to the AC, she should have 2 further treatments of AC and then rads with no FEC.
Yet further evidence to the fact that there is no standard as such to treatment
Thanks
pnv
Hello all
Well visit with Oncologist went well today. Yes its 6 x FEC for me but I did broach the subject of TAX due to TN. She did not say no but stated whilst research shows that FEC is very much a success for TN she is happy to discuss this with the Consultant in more detail and look at the possibility of undergoing 3 x 3 due to my concerns and the aggressive nature of my cancer so watch this space.
My 1st FEC is next Tuesday morning and I am absolutely petrified but know that it has to be done just hope the SE’s are gentle on me. Got appointment later this week for wigmaker to visit my home (yes our hospital wig lady does a free of charge home visit which is just fabulous) so OH should enjoy taking complete advantage of a good laugh whilst I decide what is very much the look for this season!!!
Once chemo finished 5 weeks of rads (was originally 4). She was a lovely lady and was so kind and understanding of my concerns but at the same time could see that I prefer to know what is going on and can take any news, she again stressed the aggressive nature of the cancer and the need to be certain of full body protection in respect of spread hence the 6 FEC.
Tracy xxx
Hello Tracy
well thats one hurdle out of the way and it good you feel a rapport with your onc, sending you a big hug and to say it doable girl take it in your stride and you know you have a whole army of support out here. looking at pnv post just before yours must also make you feel a bit stronger
pnv , thanks for post good stuff whishing you and mrs pnv all the best coping witht he rest of this journey
take care xx
Val GREAT NEWS go girl :))))))) xxxx
Morning ladies,
Im getting alittle worried about all this fec/tax… Im also TN, and had 4 nodes removed one of which showed as micromet, im too have a mx then rads, im having my 5th fec next, tax has never been mentioned to me, but i shall certainly mention it to onc, when i next see him…
i have faith in my onc. as i know him very well i work at the hospital he works in and he know’s me well, im sure he would of given me tax if i needed it, but i do wonder when there is talk about TN = TAX…
am i being silly worrying?
Love and hugs
Donna
xx
Hi all,
I am 40 yrs old,was dx Inflammatory TNBC in sept after 4 month mis-diagnosis at a different hospital,incl 2 operations for suspected cysts! I had multiple nodes affected and a breast the size of a melon but thankfully it hadnt spread anywhere else. I had 4xFEC + 2xTAX, 4 weeks later a mastectomy, complete node clearance and reduction. Received results few weeks later to find out no sign of cancer left in nodes, there was a small clear margin round tumour which was 12.5cm in size( yes, 12,5cm!)and weighed 3.5 kilos. Whilst on chemo, i worried it wasnt working because there was no visible sign of improvement but to get clear nodes was evidence it had done its job. Due to the size of the tumor and aggressive nature of Inflamm BC,i am now on a regime to hit any tiny cells which may be left hiding, of 5 weeks radiotherapy at the same time as 4 more doses of TAX, its hard going but its also good to know this is purely as a preventative measure. Ive tried to be positive throughout my treatment and hope my story might help others to be positive, after all, my tumor was massive and i no longer have it! Good luck to everyone going thro this.
Kerry xxxx
Hi Donna
Not sure if this will be helpful or not - but I am going to be having FEC-T (3 of each) starting 3rd May. However I am having chemo first. From the ultrasound it looks as if there is no node involvement, although obviously microscopically the picture may be different. Obviously they haven’t sampled or investigated the nodes and won’t do until surgery. So I am not sure that the T bit has anything to do with node involvement, given that I am assuming at the current time that I have no node involvement and won’t know until September time if there was any involvement at surgery.
The way the Oncologist explained it to me was that they try 3 of FEC and if cells become resistant they are then zapped with the T drug to counteract any resistancy.
However, if I had taken part in the Avastin trial, I would have received T then the FEC, and the Oncologist said it didn’t matter in which order you received them.
Perhaps it’s just all down to the views of the Oncologist??
For info I am grade 3, 3cm, triple neg bc. At this stage I am hoping to have chemo to shrink the pepperami animal, then surgery to remove remains or footprint, and rads to finish off.
Hope your treatment goes well and you get the care you need
Michaela x
I am also on chemotherapy first. I have a 38mm TNBC, some node involvement on CT and MRI, but 2 LN aspirations have been negative, obviously without surgery I don’t really know how much lymph node involvement I actually have.
I have had 2xFEC so far and the lump in my breast has gone from the size of a duck egg to completely vanished!!
So I guess I am proof that some TN BCs are VERY sensitive to FEC.
Hope that is helpful to some of you. I may have some TAX after surgery if it looks like I had extensive LN involvement but the Oncologist also said we may complete on FEC since it is clearly working.
often if its over 2 cm and known tnbc they will do chemo first and this has been having some very good outcomes… this is a size thing and not a node thing so even if you have a large tumour and no nodes they still often offer chemo first… some do 3 or 4 cycles with a break for surgery then the remaining 3 or 4 some will do the full lot of chemo before surgery.
they are doing so much research into TNBC its not surprising some of the info is conflicting it must be hard to keep up with all the changes.
good luck ladies.
Lx
Hi lulu 
I’ve seen you mention this before + it always gets me thinking about my situation. I was never given the option of chemo first despite my tumor being big?? It was never even mentioned- the first I heard of this way of doing things was on this forum. Naturally I can’t help wondering if my treatment would have been more effective had I done chemo first. Obviously we will never know but it seems increasingly common for large tumors to be treated with chemo 1st and then surgery. Pre-surgery, my tumor was estimated around 45mm but it was slightly smaller at 39mm.
I know tax is considered the gold standard but it obviously didn’t work for me as I had recurrence just after my 3rd dose. I know of a few other ladies who had a similar poor response to tax (have read about a few on here too), so try not to panic if you are not being offered tax. No chemo is 100% effective with everyone + I also know a few tnbc ladies who are doing great after just fec, and some who had fec-tax also. So there’s no right answer on this you’ve just got to hope for the best.
Tina x