Changed diagnosis


Been the see the oncologist on the 21st and have been in a state of shock since!!

I have just finished my course of chemo - originally was going to have 3 fec 3 tax but unfortunatley had a reactioon to the tax so had to go back to the fec.

Originally i was told my bc was hormone responsive and given tamoxifen from the surgery to the chemo but on tuesday the oncologist told me that the tumour was triple negative (she then went on to say that the tumour was showing on as a 2 on the scale for hormones, but that this is so weak might as well be negative, does anyone know what this means?)

This has knocked me for six, and i feel like my chances of surviving this disease has just taken a massive dive…

My tumour was 41mm and in 3/19 nodes… anyone been in a similar situ?

Help, Cant stop crying at the mo, and i have two very excited 6 and 4 yr old boys…


So sorry Corrine, no experience of this but just wanted to send you lots of best wishes.

Hi Corinne,

It sounds like you’re having a really difficult time at the moment. Hopefully other users will be along shortly to offer further support.

I just wanted to let you know that BCC’s Helpline will reopen now on Wednesday 29th December at 9am, tel 0808 800 6000, offering confidential information and support.

With best wishes,
Anna, BCC Facilitator

Hi Corinne

Sorry that this has upset you so much. My score for er and pr were 0/8, so no tamox for me. I do get herceptin though. My onc was sure I would be er + even told me I was before checking and then having to backtrack. I hope some of the tn ladies come on to give you some support. I have a 3 yr old and 5 yr old and it can be v hard going. Good luck.


Hi Corinne, my wife is TN and had chemo first. To quote our Oncologist, TN gets a bad rap.

There are a couple of plus points - it does seem to respond well to chemo, and the treatment ends sooner rather than dragging on for ages.

Hi i am borderline triple negative. Her2- er- and pr is 3 on the scale. It is a scale that goes upto 8. My consultant told me that 1 and 2 on the scale are classed as negative. Me being a 3 means they may give tablets but its debatable as to whether they would be affective. If i showed side affects they would just discontinue them. Try look on the positive like largerbloke said they are supposed to respond better to chemo. xx

Hi corinne, so sorry you are having a big wobble at such a hard time. My 3 and 5 year old have been bouncing off Walls all day so I can well imagine trying to juggle such excitment with feeling so cr@ppy. I was dx in march and have had wle, Chemo and rads. I too had allergic reaction to tax, but huge doses of piriton and superslow drip meant I could continue. My tumour was er positive but only scored 4 out of 8 which my onc and surgeon said was “vaguely” positive. I am taking tamoxifen but it’s debatable what benefit it will have. However as ling as the sideceffects aren’t too bad I can continue.

As far as I’m aware, being her positive isn’t the holy Grail of cancer. It can mean it’s a bit more aggressive sometimes and isn’t necessarily something you want to be as a primary dx. However, it’s treatment option, herceptin, is an excellent drug and puts you back on a par with her negative ladies. So this part of being triple negative isn’t something you should stress about and you don’t have to have a cannula and infusion every three weeks for a year either.

Er status is slightly different I think. However, from Reading this forum, there seems to be a pool of thought that triple negative ladies have a lower risk of recurrence after 7 clear years than er positive ladies. So, yes there may be less immediate treatment options but there is possibly longer term peace of mind to offset it. It seems to be the er positive tumours which sometimes appear with secondaries at a distant time more frequently than er negative.

Also, maybe start a thread to see if anyone is on tamoxifen for a score of 2 out of 8, as I have a vague recollection of Reading that someone has had it for a low Reading and it strikes me as an area oncologists could have different opinions on, which may be worth investigating.

Have you read the after treatment ends article by dr peter Harvey on the cancer counselling trust website? That has really really really helped me.

Take care of yourself corrinne, try and enjoy Christmas with your little ones. I know so well it’s easier said than done but, as someone on here said to me, don’t borrow tomorrows sorrow.


The er bit

the ER scale can be 0 which is a true triple negative, or ER poor which has a score usually of 2 or 3 or some consultants may even consider 4 to be ER poor or negative (there is no 1 on the scale as its made of two elements so the lowest score can be 2 or if truely negative its zero)

your prognosis wont have changed any just that some oncologists will consider any ER score as positive (even a 2 albeit very slightly) while others may consider it negative or even classify it as borderline… there have been a few research studies which has shown that tamoxifen tends to have little or no benefit in ER 0-3 regardless if they call it triple negative or oestrogen poor…

so to be honest your diagnosis hasnt changed really but what they have called it has changed… but with all the negative press about TNBC i know it can be a really scary prospect at first… but its not all doom and gloom and as the others have said you have a much better response rate to chemo… around 20-30% benefit which is excellent.

and it means you dont need to suffer the nasty side effects from tamoxifen for the next 5 years.

i have had a strongly Er +ve tumour and a triple neg one and the relapse and mortality rates are similar for both… around a 5% difference between the two so its not the massive negative effect often portrayed.

i think because its not been identified for very long they dont actually have a lot of information and this is what leads to the negativity however more and more research is being done in this area and they are even developing targeted treatments which may be given for TNBC in future (currently only in the trials stages and available for people with mets… but the results are looking very promising).

lulu xxx