Triple Negative and confused

Hi this is my first post although I have been reading many of the threads for sometime particularly of late. I was dx in March with triple neg bc. I was told I had an area of 4mm in my right breast with cancer in the nodes in my armpit between my breast and collar bone. I was told at that time that they did not feel surgery would be a suitable option as they considered me to be stage 4 although there are no distant mets. I was placed on 6 cycles of AC chemo. The first three worked really well but the next three had no impact. I am scheduled to start radio on Tuesday 25 sessions plus 7 boosters. The consultant radiologist says she felt I was only stage 3c and is therefore approaching my treatment on a radical basis. I am now totally confused having read the staging description on the CR site and I seem to fit the bill for 3c- does this mean I should have had surgery - I know that some ladies have had these lymph node chains removed - Are there any other ladies out there that have triple negative cancer and have not had any sort of surgery???

Thanks for your comments in advance

Helen

Hi Helen,

I am not surprised you’re confused, having been given contradictory information by the oncologist and radiologist. I was caught in a situation where the breast surgeon and oncologist disagreed about treatment and spent 2 months in an agony of indecision. The stress was unbelievable.

I am not triple negative but there is a really good thread you could post on in the current issues/hot topics session called something like " Triple negative - ask the expert".

Hope you get some helpful replies.

Take care.

Wendy x

Hi Helen

Sorry you haven’t had more replies…probably because yours is quite an unusual query.

I can’'t directly answer your question. People diagnosed with sceondaries to distant organs usually don’t have surgery and I don’t know about people in your position…perhaps try calling the BCC helpline for advice or if ask to be referred for a second opinion at a centre of excellence. Its scary to have two different views at the same hospital…the medical team should present a clear lead to you about the best treatment for you.

I was diagnosed with primary triple negative bc in October 2003 and had AC before surgery which like yours worked the first three and then the cancer grew after another three. I then had surgery and radiotherapy and further chemotherapy…taxotere… which kept me in remission for two and half years. In April 2007 I got a regional recurrence and the same confusion as you have over stageing…was it stage 3c or stage 4?

Apparently stageing categories have been changed recently…so now strictly speaking stage 3c includes spread to lymph nodes in chest wll, claivicle and neck area whereas it used to be Stage 4. I have come to realise that whatever the stages are called are to some extent irrelevant…what matters is how your cancer responds ot tretament. Over the past year I’ve had 4 different chemos: vinorilbine, xeloda, carboplatin and gemcitibine…and I’m about to start another one called taxol.

Your case like mine sounds relatively unusal (though not rare) and from my experience being different from usual stories feels particularly frightening and isolating. It really pisses me off that there is so liteel information about regional metasteses of breast cancer (I use that phrase because I think its helpful…in my case my cancer is incurable…so the niceties of stageing numbers piss me off anyway!)

Please if you are uncertain take some further advice. One thing for sure…I do think you should eb aksing your conologist about having a second chemotherpay…one of the taxanes (either taxoeter or taxol.) The decision about your radiotherpayand about chemotherpay should be taken as a whole coherent treatment plan. (they might have decided to try rads before ‘using up’ another chemo)

But please check it all out…I’m just another triple negative patient who’s been living with this for 5 years now so I’ve gained a lot of amateur knowledge.

very best wishes

Jane

Thank you ladies for your comments - I have booked to see the BCN following my radio tomorrow - I think you may be right Jane about the new 3C category but what concerns me is how they may adjust the approach to treatment as I was told initially that as I was stage 4 they would not consider a cureative programme but only a contain and control programme, so my chemo was on a palliative basis, but the radiologist is treating me on a radical basis (which falls under the cureative scheme). I know that they are being careful with what chemo they use as they don’t want to throw away options too quickly - as I did immediately ask for avastin and was told that there were a number of other things that they would prefer to try first. I just don’t want to travel this journey and then find out that they should have down things but didn’t. It may well be that they have good reasons for the route they have chosen for me but that they haven’t made it clear to me so I am going to take the Bull by the Horns and make them explain.

I think what is so scarry about all of this is that I was under an annual family history review scheme and the mammo showed nothing it was only an inflammed lymph node that the Doctor asked to double check - the results of that showed cancer and the subsequent CT showed the further lymph node problems but it was only the MRI that showed the BC in the breast. I had no real signs or symtoms only a general lethargy which I had put down to loosing my Mum unexpectedly in the January. If it had not been for the annual review I would probably still be walking round waiting for test on the odd lump that eventually came up on my collarbone - none the wiser anyway thanks again for your comments