Triple negative breast cancer

Just wondering if there are any other ladies on here with Triple Negative breast cancer. What treatment they had and how they coped. Cheers xx

Hello @GaI I have just split this discussion for you.  I hope all is going well.

@mum2jj, @SoldierCrab, can you help out here? 2 names that come to mind, there are many more. 
Take care

Hi I have had it twice. First time lumpectomy/chemo (FEC) as I had allergic reaction to taxotere first attempt) then rads. That was 9 years ago. 2nd time was 6 maths after all treatment. Went on to have mastectomy followed by more chemo. Managed the taxotere this time, think it was TC, or TA.... can’t quite remember as the good news is it was 7 1/2 years ago. Don’t mean to scare you telling you about the recurrence,just letting you know I had it and got through it too. 
Huge hugs. 
Paula xx

Hi @Gal I  had triple negative breast cancer as well. I  did dose dense AC  for  4 treatments  then 12 weeks paclitaxel with 3 carboplatin  added as well . It was tough but it shrunk the lump  I then had wide local excision and auxiliary clearence followed by 6 weeks of rads.  I am trying to keep positive about it all and I am now trying to get on with life  . Take care xx

Hi @Gal I was diagnosed with TNBC last October at 41. Had 4 x AC chemo, 4 x Docetaxol followed be wide local excision & axillary clearance.  My lump was still 2 cm when I had surgery and lymph nodes were suspicious (but no sign of active cancer).  It was recommended i have 6 weeks Radiotherapy then 8 cycles of oral chemo Capecitabine. The additional chemo was based on a recent trial which showed reduced chance of recurrence in women who had residual cancer after initial chemo.

 I had my 12 month mammo last week and no sign of cancer 😀 This has given me a boost to finish the oral chemo and look forward to getting on with life.  I was so upset at the prospect of chemo but it was manageable and I was mostly able to work through.  Minimal side effects with AC but Docetaxol floored me for a week after, sadly I was allergic to Paclitaxel which is meant to be easier to deal with.  

Be guided by your treatment team and my biggest advice beware of google when it comes to TNBC, lots of out of date info... 

take care & good luck with treatment x

Thanks for all the feed back ladies much appreciated.

Hi I was first diagnosed with TNBC in dec 2015, I've had a number of recurrences.  if I had my time over there is some things I wish I knew when I started out. 

BCNA research shows a lot of doctors do not like discussing what they consider to be high cost options because of the difficulty they experience if patients can't afford it.  But what they consider high cost and what I consider high cost are very different things.  A $450 PET scan is cheap to me if it could save my life.  So I learnt to ask - if money was not an issue would there be anything we would change to my treatment plan.  Am I getting the absolutely optimal treatment or is there any other options we would consider if I had private funds to pay for extra tests or treatment.  Suddenly I was offered PET scans and found out about "foundation one" testing of my tumour.  (Foundation one testing cost me about $4k but was worth it for the peace of mind to know that we were making the best informed decisions possible and not wasting time and allowing cancer to spread by using treatment options that were never likely to be successful).

I would also ask to be much clearer about what area was being radiated and why or why not.  my radiation oncologist at the time decided on my behalf without discussing with me not to treat the supraclavical area. - I didn't even know it was an option.  I would have taken a lot of extra side effects for even a small reduction in risk (I have a daughter with a serious disability), but I wasn't given that option.  They didn't treat my supraclavical area and that's where the cancer came back and then spread further from there.

I would ask about mepitel film to reduce radiation burn - not all areas use it - and often they don't even offer it to you and discuss the pros and cons.  I've had radiation twice once with mepitel and once without - it really makes a difference.

I would ask about neulasta - it gave me really bad bone pain - but was worth it to reduce my risk from infections especially as I have kids that bring home every possible infection from school.

make sure you tell your treatment team about every side effect - don't just accept it - they have really good new anti nausea meds now - you don't have to be puking up everywhere like you see on any TV or movie portrayal of chemo - it's not like that anymore.

Sending gentle hugs.

Thank you TripleNegMama for all your informative ideas, I will be asking for sure. I feel better going in knowing something about treatments then going in blind. I was wondering do they treat you different because of your age. I have heard some people say if you are young you get everything to help. Not sure if I am making sense here. Take care Hugs Stephanie