I had a mastectomy and full node clearance last week. I am awaiting the results but am scared to death that i am now triple negative on top of everything else. I already know i am HER2 negative and hormone negative(words of consultant when diagnosed). Does this conclude that i am TN? When will I know? Not knowing things is just torture. X
triple negative is when you are negative to HER2 and both hormone receptors oestrogen and progesterone… so it does indeed sound like you have TNBC…
there has been a lot of negative press about TNBC in the past but they are doing more and more research into this field… i remeber finding out i had TNBC and like you i was terrified but have read up on it now and its not such a scary place to be.
a lot depends on you own specific pathology… but one of the good things is that after your treatment is over you dont have to put up with more hormonal treatment for the next 5 years, although PARP inhibitors are being given very successfully in research trials for TNBC.
you might find this page of interest…
Hi, My wife’s tumour was TN. The words of the oncologist were “TN gets a bad rap”!
I see it as swings and roundabouts. My understanding (Note I am in no way qualified) is that TN tends to respond better to chemo, but does not have ongoing options like Herceptin et al.
That means we don’t get the benefits (or side effects) of the ongoing treatments, but the flip side is that it does not drag on for potentially years - we should hopefully be able to draw a line in april.
On the response to chemo front, on diagnosis the lump was 24mm. After 4EC/4TAX the surgeon could not find the lump any more.
Thanks Guys for responding. Since asking this quetion i have had it confirmed by the BCN that yes i am TN. Yet to have results of everything post surgery so dont know wot overall outlook is for me so we shall see. It does appear to be swings and round abouts. XX
Saw oncologist today, I too am triple negative. Would you like to keep in touch to compare notes?
Yes sounds good to me. Wot you found out today then? Is prognosis gloomy for us TN people? Or were they quite positive? X
weena i had a grade 3 TNBC with no node involvement although did have LVI but i have been told my prognosis is pretty good… ie more chance of being here in 10 years than not… i didnt even have the strongest chemo which is usually recommended for TNBC (taxotere) as my unit only give it to node positive patients… i had epi-cmf.
one of the things about TNBC is its more likely to occur in younger women and more likely to be related to genetic faults… and women who are diagnosed at a younger age and those with gene mutations tend to have more aggressive cancers even if they arent TN.
good luck with your treatment both of you
Thanks Lulu. Its all interesting stuff. Mind boggling at times. XX
I have 2 affected nodes and grade 2 cancer, got a bit further on today, will have hick man line placed 20th of the month and start chemo 30 th. I do remember I am to have FEC and TAX but have forgotten how many cycles.
I will have rads after this as clear margin only 2 mm at chest wall. Oncologist was not saying anything about outlook and to be honest was afraid to ask!
Anyway onward and upward though wobbly today as the problems seem to be stacking up re cancer and life in general.
Hope everyone all the best, Pat
patty 2mm clearance is more than enough… they only look for 1mmm clearance… but saying that i would take everything they offer.
on a more positive note being grade 2 is better than grade 3 in terms of prognosis… also the smaller the cancer is the better the prognosis too… eg over 80% survival to 15 years for a 3cm tumour.
good luck with your line insertion and your chemo.
sending massive hugs and hope tomorrow is a brighter day for you.
love and hugs
I am tn and was 4 yrs post dx in October-I had WLE chemo and rads.I was terrified at first but it isnt a death sentence and as someone else said there are good points;
1]tnbc usually responds to chemo
2]if you go 8 yrs post dx without recurrence then you are unlikely to have it come back.
It is true that tnbc is more aggressive in the first couple of years which is why they ‘throw everything at it’ but it levels out by 5 yrs and then the risk is slightly less than other bc.I was told that the risk from tnbc is about the same as Her2+ with Herceptin and less than Her2+ without Herceptin.It also depends on size,grade and lymph node involvement.
Try not to panic-its never good to have bc but there are always options.
Hi Pat how are you feeling? Let us know how you go on with the line.
I have grade 3 with 3 lymph nodes involved. Going to see ONC for treatment plan on thursday. Think my chemo will start after xmas now.
Keep strong. XX
Had quite a good day today, daughter of mine took me to have feet nibbled by fish. Have had a creative/ dstructive afternoon burning paint off a door also gave a cold ca
Ler what for for asking to speak to MR, was told in no uncertain terms that he does NOT live here!!! Don’t know if I’m getting more frequent calls or I’m just in more.
On the negative side my cording is getting worse & can’t see a physic till 6th Jan, and the invoice came to get a wig, it’s all getting very real now.
That’s the tale from me how’s everyone else doindpg?
Feet nibbling sounds interesting. What a weird feeling that must be.
As for cording, i suffer with this too. Some days i think its getting better and then i gets much much worse. Find the exercise where you put the arm straight to the wall and walk it up, VERY challenging.
Good luck with the line putting in and with wig choosing. X
Oh dear seem to be suffering fat fingers! Could it be a side effect from red wine?
Have to do new years eve early this year, don’t know what excuse for red wine I can find tomorrow? I think that could successfully occupy my mind whilst waiting for sleep to arrive, do you struggle with getting a good nights sleep too?
I think i will find it hard to sleep tonight!! saw ONC today and she confirmed I’m to have 4EC and 3 TAX and radio. Cause collectively tumour is 4cm and lymphs were involved and TN there is a moderate chance of recurrence and or spread. I wanted to hear the words LOW or SLIGHT not moderate. Yeeks. I totally feel stressed out now with it all. Sorry to be gloomy but todays not a good day. X
Hi Weena - my wife is TN, just had 4*EC 4*TAX. Tumour was 24mm. On the scan near the end of chemo the consultant could not find the tumour.
TN isn’t all bad.
Thank you. Thats nice to hear Paul. X
You got your schedule yet ween a?
I’m up for a nice weekend prior to line then Xmas.
Chemo galloping up the inside, wig and bra fitting with prosthesis ahead by a neck.
I seem to be busier now than before dx, oh well c’est ls vie.
Am having pre chemo chat on 29th and sign consent then chemo starts 6th jan. Think i see wig lady on chemo chat day. New boob fitting after xmas. Good luck with the line fitting. Think my hand will be getting a battering b4 they consider a line and even then it would be a hickman cause they dont do PICCS. X