Breast Cancer Now Forum

Hi have yovbu tried searching for triple negative warriors on Fb? If yes and that doesn't work, send me a friend request ( chris Ashworth) and I will introduce you to one of the admin team chris xx ... View more

Hello  Williams500  sorry you find yourself here but please don't lose heart. The early days following diagnosis are very scary and the Internet is not a reassuring place for TNBC. I was told from the beginning not to google, but to stay on reputable sites like this one, Macmillan or the American site.  Pam is quite right - one of the positive aspects about TNBC is that it often responds very well to chemotherapy , more so in fact that hormone positive Breast cancer. It's true that there are as yet no targeted therapies like tamoxifen or anastrozole for us TNBC ladies but the up side to that is neither do we have to experience the often unpleasant side effects. The outlook for TN is often very good and I know of many women through the various online  forums and groups I've joined who are 5, 10 or more years out.  My oncologist said to me that once you are at 3 years post treatment your risk of recurrence drops to that of hormone positive BC whilst when you get to 7 years it's not coming back. There are a couple of FB groups which you might be interested to look at for support - TN warriors is a good one but there are others too. good luck with all your treatment  chris xx   ... View more

Hi Jac welcome to the forum and I'm sorry you find yourself here. I have a TNBC diagnosis too and understand how frightening this is, especially in the early days when everything is so new and confusing. I had my chemo fist and found that once I got into treatment I felt better because I was doing something positive towards eradicating it. All the worries you describe are perfectly normal. As its a bit quiet on this thread these days and if you have access to face book, why not consider joining one of the Fb groups specifically aimed at TN women? There are 2 in the UK - TN warriors and TNBC support. Try looking them up and if you're struggling let me know and I can put you in touch with the admin team. They are great sites with women who are in exactly the same situation as you take care  chris xx ... View more

Hi Jules, sorry to hear you've had to join us but welcome to the forum. It is quiet these days but there are a couple of Fb groups specifically for TN ladies you might want to join Tn Warriors and tn support. If you can't find them let me know and I will point you in the direction of the admin team. i was diagnosed last July and had my neoadjuvant chemo at the Christie too. Then surgery at Wythenshawe ( lumpectomy) and about to start radiotherapy. I found the team at the Christie very helpful and once I started chemo I was relieved to be getting on with it. You probably know thatTN responds well to chemo - it's one of the positives we have going for us. My advice at this stage would be to stay away from Google unless you go onto reputable sites like this or the American equivalent for example. Much of the stuff on otter sites is very out of date or just inaccurate.  Take care,  chris xx ... View more

Hi Belinda im sorry you have to join us here but this is a good forum where you can find lots of support and advice. There are others too, including the U.S. site along with specific Fb groups. i was diagnosed last summer and can clearly remember the overwhelming fear I experinced. I'm a nurse as well although this is not my field at all and my experience with BC patients was ofer 30 years ago when outcomes and treatment were very different. the good news for us TN ladies is that this is an area which is being extensively researched and there is a lot going on. Chemo is known to work very well with TN and lots of women do well following their treatment ending. I found that Dr Google was definitely not my friend as much of the info on uncredited sites is either out of date or just plain false so my advice would be to stay away from them and stick to places you know are accurate.  I found that once I had my treatment plan and then actually started chemo ( which I had before surgery) I began to feel better as I felt that I was beginning to overcome it. take care and stay strong , you will feel better soon  chris xx ... View more

Also meant to say Evelyn that if you are on Facebook there are 2 UK based groups which you might be interested in joing - triple negative warriors and triple negative Breast cancer UK support. Let me know if you're interested in joining them but can't find the link chris  ... View more

Hi EvelynQ I was diagnosed in July 2016, had chemo first then lumpectomy just before Christmas. Will be going on to have radiotherapy next. How are you doing?  Chris  ... View more

Hi Arbor please don't worry about going straight to chemo as it's quite common. Some oncologists like to do this to shrink the tumour first. I had my chemo first and was really worried to begin with as I felt as though I just wanted it removed but once treatment started I began to feel better and it was reassuring to know that my tumour was shrinking, so I knew that the chemo was working.  You might find it useful to join one of the Facebook groups specifically for women with TNBC - search TNBC warriors and you should find it. If not please let me know and. Can put you in touch with one of the admin team take care, chris xx ps hope you got your line sorted out ... View more

Hi Cath funnily enough I'm booked in for a WLE on 19 th December too, but I've already had my chemo ( finished on thursda) so a bit further down the line.  Sounds like you've had a rough few years with your spinal problems as well - this must feel like the last thing you need. My emotions were all over the place in the early days too, I found it hard to cry but did become very withdrawn until I gave myself a very stern talking too !  Once you've seen your onc next week in sure you will feel better take care chris xx ... View more

Hi Cath sorry to hear your news but welcome to the forum. There are lots of lovely ladies on here who can help to support you . We understand what a complete shock this diagnosis is and how frightening things can feel, particularly in the first few days and weeks before you get all your results in and your treatment plan in place. It does get better. My advise would be not to google stuff about TNBC as there's lots of misleading gloom and doom out there which is inaccurate. Stick to reputable sites like this one or the  American equivalent or Macmillan. do you have any details yet about when your treatment is going to start? love and hugs chris xx ... View more

Thanks for sharing your story hero67 - this is really wonderful inspiring news and just what I needed to read today. as Pam says, hope everyone else is doing ok too chris xx ... View more

Hi Ann & Dee thanks so much for your replies, I will look into the research especially any on the TNBC foundation site Ann - great to hear you are all done and hope you have a lovely holiday. I'm so looking forward to the time we can get back to doing normal things. Dee - your daughter sounds like an amazing warrior queen having worked all the way through her treatment and come through this twice. So pleased she is doing well now and I agree this site can help so much when you're in the middle of this nightmare. Helly - thanks for your info about the ginger, I had no idea that might be helpful so will look that up too. i won't be starting until I've finished my chemo as my onc advised not but want to get my facts straight and ducks in a row so I'm ready chris xx ... View more

Hello ladies, I haven't posted for a while either but nice to see that the thread is picking up. When I was first diagnosed in July I found the support on here - even just reading the posts of others- a bit of a life saver. I'm doing Neo adjuvant chemo and of EC then carbo platin / paclitaxel and now just over half way through.  can I ask what you lovely ladies are doing about turmeric because I'm really confused . Don't know whether. I should take this as a supplement, during cooking or added to juices. I asked my onc and he was non committal. chris xx   ... View more

Cheers Colista, friend request sent now  xx ... View more

Mmm this isn't going well - can't find you so will look properly later x ... View more

Hi Colista yes would really like to join the Fb group but can't figure out how to pm you? Can you let me know when you get a moment.  On Facebook as Chris Ashworth ( very unoriginal that!)  thanks xx ... View more

Hi Colista  I could literally hug you for posting this and your other lengthy post about the more positive side of TNBC. It's absolutely what I need today having spent a lot of time getting myself into a tail spin of 'what if's'.  Im so pleased that you managed to get a pcr during your treatment and you've given me hope that I can achieve this too. Thank you more than you will ever know.  Chris xxxx ... View more

Hello everybody i haven't been on the thread for a while as coping with diagnosis ( July 2016) and then start of treatment but your words of support were a lie feline to me in the very early days when I felt that I was drowning in fear. i hope everyone is doing well with the various stages of their treatment / progress . I am having chemo first as my lump was approx 4cm. I've had EC x 3 ( just finished third dose) and then will have 9 weekly doses of paclitaxel and carboplatin. I know that the aim of this is to try to shrink the tumour and better still get a complete pathological response but I'm looking for some words of encouragement about how quickly this happens? As I said I've just finished my 3rd EC and my lump doesn't feel to have shrunk very much at all. In fact some days I think it's bigger. Plus my lump / axilla are sometimes painful. I discussed this with my onc last week and he says on examination it feels smaller and so is happy to continue with the plan whilst the pain may be caused by invading white cells doing their job. Whilst I desperately want to believe this I have a nagging doubt in my head that the chemo isn't going to work 😔 . Can anyone else share their story about how they responded and whether it took a while for the lump to shrink thank you so much ladies take care  chris xx ... View more

AnnDaw/ Sue thanks for the info about supplements which I will definitely look into once my chemo is finished ( initial appt on weds). Can I ask where you get your info re clinical trials etc as I am interested to know but in a way scared to google anything in case I scare myself even more - if that's possible. thanks chris xxx ... View more

Hi everyone ive just been diagnosed too and have been reading through your posts to try to help me feel better - as someone has already said, I'm so glad I found you i got my diagnosis on Friday and feel like I've been hit by a train , it was such a shock. I feel like I can't function but not able to cry. Just waves of fear keep sweeping over me and I feel sick. I don't know how any of you manage to cope with this , let alone stay positive ( as people keep telling me) as I feel like I want to crawl into a corner and never get out again. I've been told that I'm having chemo first followed by surgery - not sure why as the 1 node biopsied  was clear but still waiting for that appointment to come through and it feels like forever.  Can anyone please tell me how you came to terms with this awful diagnosis and then turned it around  in your head into something which you could manage. Did this feel better once your treatment got started ? I've tried practising mindfulness and positive thoughts but they just won't come  chris  ... View more