Hi everyone, not sure where to start as everyone seems so clued up.
I was diagnosed triple neg BC last July, grade 3, lumpectomy, 2nd op to remove lymph glands.
Had 5 out of 6 chemo’s now (TAC, last one this friday then 15 courses of RT taking part in the Import High trial - trial treatment 2.
Is there anyone else out there whos triple neg and having TAC ?
Well basically would be great to hear from others in a similar situation as i really dont know where to start, actually havent a clue where the last 4 months have gone oh yes “chemo brain”.
love to you all
Welcome to the forums, you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
I was diagnosed triple negative, Grade 2, mid December. Had lumpectomy and SNB, no node or vascular involvement, but am having 4 x Docetaxel and cyclophosphamide. Not sure if this is the same as TAC.
My lump was triple neg, no nodes and no vascular involvement and I had 6xTAC chemo, finished on 7th October last year. I then had 20 rads which finsihed on 24th November (not part of a trial).
I went back to work on reduced hours on 4th January and I now feel like I am getting back to normal in terms of energy levels etc.
How have you found the TAC chemo, I will be honest I found it very hard towards the last 2 chemos.
Love Amanda xx
Hi Loula and Amanda,
many thanks for your responses, its hard to know where to begin with our type as theres doesnt seem to be that much info out there and you dont always know what to ask and where to direct some questions.
I guess im just trying to learn more about our type of BC and what can be done. I understand that TAC is a pretty harsh regime (Doxarubicin, Docetaxel and Cyclophosphamide). It does get harder toward the end doesnt it so approaching the last one with mixed feelings happiness as its the last one and dread as i know its going to be rough.
Was it difficult adjusting to going back to work ?
love to you both xx
Whilst still having my rads in November I couldn’t even plan on going back to work I was that tired, had to drag myself to my appointments and I used to go back bed in the afternoon! but in December I started to get more energy back. I was suffering with missed heart beats too but I thought maybe if I go back to work I will forget about them and I did. For me, I am so glad I have gone back to work, I feel like I have my life back, doing the normal routine, sorting the kids out in a morning then going to work. It does help that I love my job. I did reduced hour for 4 weeks and have just gone back to my normal hours this week, I am a bit tired today but not exhausted. I wore my wig for four weeks but I was just too warm so have gone without this week and it feels so much better, everybody says my really short hair style suits me.
I was grade 3 and with it being triple neg I often worry about it coming back as we don’t get Tamoxifen or Herceptin but I have seen lots of posts on here about ladies who are triple neg and are still cancer free five years later and I think we have to focus on that, I have also asked my Onc to consider me for any trials that may come up.
When you treatment finishes you should get 3 monthly check ups with both your surgeon and oncologist for a while, I saw my surgeon the other week and it was so reassuring to know that everything was fine.
Just private message if you want to know anything.
Take care Amanda xx
I’m just geting my head round all this too. Thanks to Amanda and Loula for that info. The mixes of chemo do seem to vary. I’ve had an op to remove lump <2cm; Grade 2; TN; no node involvment and poss/prob vascular invasion. I am to start 3 x EC and then 3 x Tax. E (epirubicin) is I think, similar to doxarubicin, C is the Cyclo… and then T Doxetaxel. I don’t know what dosage yet as it’s been posponed because of an infection.
Why some people have them together and some separately, I don’t know. Not sure why some have FEC and some just EC. The oncologist said that there was no particular evidence that F made any difference.
I ask so many questions when I’m there - I worry that it’s too much. I find this forum very helpful, especially the feeling that there are other people out there who know what this anxiety is like. Cheers! I hope all goes well.
i had a TN tumour in may 2009… it was 19mm grade 3 with no nodes but extensive lymphovascular invasion and i got epi-cmf (epirubicin x4 then cyclo, methotrexate and flouricil x 4).
i didnt get tax, i did ask about it but was told i wasnt getting it despite being grade 3 TN and this being my 2nd primary… dont know anybody else with TNBC who has had E-CMF… but it wasnt really that bad… think its generally a bit milder than some of the 3rd gen regimes.
Hi everyone, I hope you are all ok ?
sorry for delay had my last chemo on the 4th !!!, have good days and bad days, my relationships gone belly up which im really sad about and stressing out about that when i should be concentrating on getting better, the drugs totally took over my emotions in the last 7 ish weeks, i think i was a bit of a nightmare tbh, but still he should have made more allowances for this i think, anyway one day at a time.
i start RT on the 23rd, for 15 days, so they dont give you much of a break do they lol !!, did you find that the RT tired you out or was it a cumulation of the chemo then that happening everyday?, Im glad you found going back to work a help, im not exactly looking forward to having to work again, but the company would be great as i live on my own.
the good news i guess with our triple neg diagnosis is that there doing lots more research into this type now, so things can only get better treatment wise etc
sorry again for delay in responding
Hi all, this is my first post since being diagnosed with TN in July 2009. I had grade 3 no lymph node involvement, a mastectomy followed by chemo e-cmf. Glad to know someone else had the same regime as I was worrying TAC was the only one recommended for TN.
18 months on I’m all clear at the moment but do still worry at the slightest ache or pain. At least I know where to come whenever I’m panicking in future. This site is brilliant! Hope to get to know some of you over the coming months. All the best everyone - bye for now xx
Hi poppydavid and welcome to the forums
I am posting a link to the BCC ‘Moving forward’ web page where you will find some information and support which may be of interest to you relating to moving on after breast cancer/treatments:
lovely to hear from you !, Im so glad to hear that your doing well after your treatment, how are you feeling in yourself in general though ?
i too was grade 3 but the lymph nodes were involved, so had two ops, but i only had a lumpectomy. Im only now starting to go online more, my concentration levels have been shocking !, as im coming to the end of my treatment im finding im relecting more on what ive been through and and i think its hitting home now just how hard its been despite trying retain a sense of myself which i thinks been the hardest !!!
RT starts next weeek for 3 weeks, then what ??
hope to catch up too soon
take care xxxx
im also TN but im having x6 FEC, grade 3 also, after chemo im having a mx then as my onc said 4 weeks of rads just to be on the safe side even though my breast surgeon didnt think rads was really needed, but my onc said that if i was his sister he would want me to have it so i am just to zap any little buggas.
love and hugs
Hiya Sarah , Poppydavid, Donna and everyone
I had 3x neg grade 3 and high lymph node involvement back in 2008 had ac/tax and 31 sessions of rads and still here to tell the tale
Rads i found tiring but as you say Sarah think it was after the chemo and then truddling into London everyday for the rads
Hi poppydavid I was diagnosed with Tnbc around the same time as you it was may 2009 and was grade 3 and no nodes and because nodes were ok that’s why I had e-cmf instead of fec-t. It is actually quite nice to know I’m not the only one who had e-cmf for Tnbc so I’m very pleased you posted.
I have recently been diagnosed with Triple neg I have been told its grade 3 but there was no other involvement. I have had a lumpectomy and some lymph nodes removed to be on the safe side. Its encouraging to see some of you on-line as some of the stuff I have been reading about triple neg is rather depressing. I am struggling to come to terms with my diagnosis as I have a 4 month old son and obviously I am wondering if I will be around to see him grow.
I would love to hear from any of on how you managed your feelings etc after diagnosis as I feel like I am in denile at the moment.
i felt traumatised at first when i found out it was triple neg as i had read how bad the prognosis was… but i then started to be more aware and read research papers etc and made myself fully aware of the risks and discovered that there are many folk healthy and alive who were wandering around years after TNBC.
its fairly new so many people diagonosed years ago never had the label TNBC just that it was hormone negative and were thankful not to have hormones but just got on with their lives… maybe sometimes we know too much.
each individual case has its own prognosis, etc for example mine was only 2 cm and no node involvement so very low risk of recurrence.
Thank you for response think it helps speaking with people in similar situations although I wouldnt wish this on my worse enemy…
Im seeing my oncologist on Wed regarding treatment going forward, Im like you had a small tumor around 15mm with no spread to lymph nodes etc I have been told that I will require both chemo & radio threapy going forward to try and stop this coming back.
Thanks again for your post.
Hi Girls, I was dx with a 2.4cm triple neg tumour which was full of vascular invasion and had spread to my nodes back in Dec '03. I had 4xfec,4xTax and 6wks rads. 7+ years down the line and I’m still very much here and still ned. There are plenty of others like me, they just dont come on line any more. Keep in mind that TN tumours respond much better to chemo than other types!
Hi everyone-i was dx with a 2cm Grade2 tnbc in October 2006.I had WLE,4xfec4xtaxotere and 15 rads.So far so good-hoping to be 5 years ned in October this year.