I have been diagnosed this week after finding a lump. Im really scared that this is the end for me as I've read it's one of the worst breast cancers to have. Anyone had this type and can reassure me?
Hi. My Mum was diagnosed nearly 3 years ago with triple negative at stage 3 with lymph node involvement. When we first googled it - we frightened ourselves as the recurrence rate is higher within the first few years and obviously it's not hormone driven so you can't take tamoxifen etc BUT we were told it does tend to respond better to chemo and after the first few years your recurrence rate is considered lower than other breast cancers. My Mum had 6 rounds of chemo followed by breast/node removal and then radiotherapy. There was no sign of the tumour whatsoever after chemo and so far she is still cancer free. Two other ladies who were also at the clinic and being treated for earlier stage/hormone driven breast cancers did not have the complete response to treatment she did. She also knows one lady who was treated for triple negative approx 18 years ago with no recurrence so there are many positive stories out there x
Thankyou for replying. I'm awaiting a ct scan and meeting with an oncologist. I want and don't want to know at the same time. It's all I can think about.
I have 4 children, 2 of them under 12. How do I explain that mummy will be very sick soon.
That's fantastic news! I think once you know it's working you don't mind it as much.
She did mention a cold cap to me which I was going to look into it. it's surreal the thought of wigs. Weirdly I think that's the part I'm going to find the hardest. The rest you can hide from people and act like everything is ok.
my lump is currently about 6.4 cm which is why I need the chemo. So silly but at the time I thought it was nothing due to my age and then the loss of Sarah Harding kicked me up the bum as it can affect anyone, any age. So glad I did as I dread to think what could have happened. My biopsy was clear of the lymph node she tested but I'm so worried that the further scans might show up something else.
do you work? And if so have you managed to carry on? Sorry for all the questions xx
My tumour has already shrunk by 1/3 so definitely positive news. I found mine by accident or I don't think I would know now as I had no symptoms. The cold cap to me sounded too painful and no guarantee you won't still lose your hair.
I haven't looked into wigs yet. Yeah I think the minute you have a scarf/turban etc it tells everyone you have cancer and I don't want that. Luckily it's cold out so I'm getting away with woolly hats.
I am not currently working while on weekly chemo as I work in a supermarket so didn't want to get ill from anyone and have to put off my treatment.
That's really good news! I imagine that's enough to keep you going. I'm not sure what time dactyl my treatment plan is yet. My consultant mentioned weekly chemo and the breast cancer nurse mention 3 weekly cycle but I'll await to hear from the hospital as I imagine they're the ones who will plan it out.
Think I might start researching wigs.
oh gosh you definitely can't work in a supermarket! We're supposed to have building work start on 3rd Jan and the nurse said I really need to look at putting it off due to the risks. Feel like the next 12 months are just on pause.
I was also diagnosed with IDC triple negative. My consultant also told me it is totally curable, so with that in mind, it's those very words which keeps my positive thinking going.
We can do this Bella, we can all beat it, believe in yourself sweetheart
Ah thank you! I've been a lot more positive recently. Treatment has started and I've just completed my 6th weekly pacli taxol/carboplatin, got 3 more to go and then onto the dread EC 'The Red Devil' . The name is enough to send shivers. Thankfully I've not had any major issues with the weeklies other than some of the obvious and fatigue but I try to nap before the kids get home to see me through the evening.
i hope you're both well on your way with your journey to blasting this thing away! Xxxx
I am soon to start chemo, starting with EC for 4 rounds and 4 rounds of Docetaxel/Carboplatin.
I feel scared, especially as at the moment we aren't allowed anyone to come with us for some comfort. Can you give me some insight as to what I am to expect?
im currently on pacli taxol/ carboplatin weekly for 3 rounds and then I move onto EC. I'm also currently cold capping. To be honest I've been largely quite well mainly digestive issues, fatigue and nausea (manageable with the meds). It is cumulative so each week I'm more tired but it's not like I imagine it.
The nurses are great and I would say be honest with any side effects as they have lots of hints and tips to help you through.
on treatment day the first is the most scary as you don't know what to expect but you soon get into the swing. I take my iPad and download lots of cheesy things to watch that aren't too taxing and drink loads of water! You want to flush it out. If there's anything you want to know just ask ️. I'm only 6 weeks in so still a newbie. I've joined a fb group specifically for TNBC it's a U.K. group (joined the American one by accident at first). Lots of useful tips and a good way to vent with others going through the same thing.
I am also thinking of cold capping. I was told I would lose my hair almost immediately, although it differs from person to person. How long are your sessions? Mine will last approx 1 hr in the first round and be more intense as it increases to 3-4 hrs in the last 4 rounds. Also have you got a cannula in your arm or the back of your hand? Yes it is very scary!
Hopefully it won't be too long before I start my first round
My wife has found the cold cap to work. However, she stopped using it after 3 sessions of EC (she's had 1 more session of EC and her second type of chemo since stopping and her hair has thinned, but still has hair albeit she cut it short herself). It was thinning prior to her stopping using it. The main reason why she did stop it was due to the thinning and finding hair everywhere and the 2 or so hours it added onto the actual chemo appointment. She found the hair thinning quite stressful, so bit the bullet so to speak.
But it does work for some people. your hair will probably thin to some extent even if it does work.
My wife has found the cold cap to work. However, she stopped using it after 3 sessions of EC (she's had 1 more session of EC and her second type of chemo since stopping and her hair has thinned, but still has hair albeit she cut it short herself). It was thinning prior to her stopping using it. The main reason why she did stop it was due to the thinning and finding hair everywhere and the 2 or so hours it added onto the actual chemo appointment. She found the hair thinning quite stressful, so bit the bullet so to speak.
But it does work for some people. your hair will probably thin to some extent even if it does work.
