Hi there, have just received my results and am triple neg. Have had mast plus ANC and due to start chemo next week. Just wondered if there was anyone else in a similar position to me?
A xx
Hi there Andrea
There are loads of us here that are triple neg. Welcome to the club.
Apparently it accounts for about 10-15% of BC. It is usually in younger people.
It makes you feel so vulnerable thinking that there is no other treatment like tamoxifen/herceptin but it is a type that responds well to chemo.
Jules
Hi Andrea
I too am triple negative -
I’m going down the route of chemo first - had 4 out of 6, then hopefully just wle rather than mast (but still poss) - followed by rads.
I was initially scared that we did nott have an ‘insurance policy’ if you like but have since discussed it with bc nurse who says we are getting everything we need . I am actually glad in a way that I dont need herceptin or tamoxifen as there are so many potential side effects which seem to have a huge impact on other peoples lives.
Good luck for your chemo - I am on AC - and although I have had bad days - on the whole I have got off pretty lightly side effects wise - touching wood now!!!
All the best
Fiona
xxx
Hi Andrea
Yes i am triple negative too…i dont post here often now…
I read your thread before and was getting round to responding to it, your onc certainly has no bedside
manner does he!?
I am 15 months past diagnosis, i had mastectomy, anc and radiotherapy.
I had 9/9 nodes affected and spread to my chest wall and claivicle nodes, so very serious…
I am being treated at the Christie hospital Manchester,
There are many triple negatives on this forum, some have heavy lymph node involvement and are doing
well…
The risk for recurrence is highest in the first 2 years, then starts to drop.
It is worrying, and i have many low days,thinking it may have spread, but as far as i know im ok at the
moment.
Triple negatives often respond very well to chemo, so even though we dont have the safety net of
hormonal drugs at the end of treatment…the effectiveness of chemo balances it out…
I know you feel very scared right now, and although the oncs need to tell us whats going on
i cant see what they have to gain, by giving us hardly any hope
.
My onc has told me i am classed high risk, but has said statistics are often rubbish and
he is hopefull that i will be cured. The further you get away from the end of treatment the better you start
to feel.
Its very hard when you have been given negative news from you onc, but you will manage
to pick yourself up and get through…
Hope you get plenty more posts to help you feel less alone.
Julie
xx
Hi girls, thanks so much for your replies. It is so good to hear you are all doing so well and are being really positive. It makes me feel LOADS better. Last night and today have probably been my lowest times since first dx. I am having 3 x FEC then 3 x TAX, then rads. Fiona - what is AC? Are you having 6 of those? What stage in your treatment are you Jules? And thanks for coming back on to post to me Julie, I really do appreciate your input.
I think it’s weird as triple neg is mainly found in younger people as I thought the hormonal ones would be - I have a little boy aged 15 months and wondered if the pregnancy had triggered something. Relieved to feel it probably wasn’t.
Take care, A xx
Hi Andrea,
I too am triple negative. Was diagnosed in January aged 34- I have had 4 x FEC, 4 x Taxotere, a full mastectomy and immediate reconstruction and am now half way through my rads.
Good Luck with your treatment-I’m sending you positive vibes…
Take care
Katyx
Hi Andrea
AC just another type of chemo - doxyrubicin (the red stuff) and cyclophosphamide. Just different centres use different types and prob to to with age and aggression of tumour etc. Should just be 6 lots I get - had a scan after 3 and it had nearly halved in size - maybe it will stop there even tho still getting chemo maybe it will shrink more. they will check again after last lot. Only 2 more to go - woo hoo
Take care
Fiona
x
Hi Katy, thanks for your comments, good luck with the rest of your treatment.
Thanks Fi, sounds like things are going REALLY well, good luck.
I’ve heard that triple neg responds best to chemo so keeping my fingers and toes crossed. What happens after rads? Is that it?
A xx
Andrea
Yep after rads that is it - try and get on with life - but I KNOW that is going to be a lot easier said than done!!! Gonna get 5 weeks of rads - 5 days a week - then stop!!! Theres no doubt its gonna be scary. Think my rads will be Feb/March time.
Good luck for your treatment Andrea
Fiona
xx
Hi Fi, sounds like you are doing really well.
Did you have any lymph node involvement? that’s the bit that scares me as I had so many involved - 14/23.
A xx
Wont know that Andrea until I get my surgery which follows chemo. Surgery should be sometime in December - I am keeping everything crossed. Dont know if you have had mri or bone scans etc for secondaries but they dont routinely do them where I am. If I have lymph node involvement I am going to insist on it tho!!
Sending hugs to you and everyone else
FIona
xx
Hi Andrea
In response to what stage my treatment is at: next thurs is chemo #5. I have had 3 x FEC and now on 3 X TAX.
Starting chemo is like walking into the unknown, you just don’t know how it will hit. Each time i get a dose I think “this one is gonna get me”. Every time I tell people I am well, i say “but the effects are cumulative”. So far so good with me.
With FEC I was sick the next day. Chemo#2 was worst. With TAX it is the tiredness & flu like aches that gets you, but I had 1 achey day. (touching wood with 1 hand, typing with other). I have been very lucky so far. I would say that I have been 100%, 90% of the time. The other 10% of the time, I have scored 4-5 out of 10 on the suffering scale. Hope this helps you have some confidence for next week.
Good luck on starting it next week, let us know how you get on.
Jules
Hi Andrea
I am also triple neg, have had lumpectomy and node clearance 11 out of 22 affected and that the bit that really scares me. I also have to little boys 2 and 10 mths and find it really hard that this horrible disease may rob me of seeing them grow up. I am convinced it is linked to having two pregnancies close together but there will never be an answer for that and even if there was I wouldn’t change them for the world they are my driving force to kick this bitch out of my life. I have started 4xFEC (just had 2nd) and then 4xTax then 6 wks rads and then a lot of finger crossing my onc said a 40% chance of recurrence in 5 years but I WILL NOT GET IT AGAIN.
Take care and think positive
With Love
C
Thanks for your comments zjlove, how did you find the FEC?
A xx
Hi Andrea
Not to bad, took all the anti sickness tablets they gave me and just went straight to be. Felt sick but wasn’t and then by the morning just felt tired for approx 48hrs but able to go into town etc. The cold cap is horrible but so far hair staying put which i am pleased about as reaction from 2 yr old when I had it cut was bad enough. The chemo will be doable don’t worry about it. It is the goody after all. Take care, when is your first?
Love
C
Hi C,
My first is on Wednesday. Am really scared as I’m not sure what my reaction will be and everyone reacts differently. Glad yours wasn’t too bad and that the cold cap seems to be working…did you get a bad headache afterwards? A xx
Girls, re the lymph node involvement - I had 7/14 - 0/2 - 7/7 (I think the 7/7 refers to clavicle nodes…I take it that this is bad? A xx
Hi Andrea
No headache after but not pleasant for the first 10 minutes when it goes on. Try and not worry to much re after affects there is plenty they can give you to alleviate the sickness. I drink loads of water so whether that helps I don’t know but I think it cant do any harm. I have never heard of clavicle nodes what are they? Did you have them removed from both sides or just one? Can you believe on a lovely day like this when we have little ones we are on some cancer forum how life has changed!!!
Had them removed from just one side…I think they are the nodes which are higher than the underarm ones.
My problem is I ask the surgeon too many questions. Sometimes ignorance is bliss…less to spend time fretting about. I drink lots of water too so fingers crossed!!
Anyway, my girls are away the weekend, my 15 month old is having his nap and hubby is decorating…what bliss! looking forward to watching the rugby when my overactive mind will be clear of the bc for an hour or so…
I too am triple neg unusual at 62[dx] it all started over a year ago so just waiting with great trepidation for first annual mammo.Had WLE 4xFEC and 4xTaxotere 2cm tumour no nodes.I do wish I had the hormonal safety net but glad I dont need herceptin.Triple neg isnt totally neg:)