Hi everyone I’m really struggling I was dx in Nov 18 with invasive ductal tnbc stage 3 and multiple lymph nodes positive…i really need some success stories because I’m adament I’m not going to be a surviver and it’s really affecting my family I’m 35 with three children ages from 3 to 16. I’ve had three ec chemotherapys so far and my 40mm tumar has responded and is now less than 16mm and lymph nodes have gone from 30mm to 12 but I just can’t seem to be positive . Everything I hear is negative and just learnt that 4 people died from tnbc Help please ??
Hi Carly,
I’m really sorry to hear that your feeling so low. I’m also tnbc and have just had my last of 16 chemo sessions. My tumour has shrunk, but I’m waiting for a final MRI to find out by how much. Us tnbcs are not in an easy position, I know, and it’s definitely not always easy to stay positive. And actually, I think that’s OK. I’ve tried to stay positive, not least for my children (12 and 18), husband and parents, but they understand that isn’t always possible. Have you been able to talk to your family openly about your feelings? That might help. Also, talk to your chemo and/or BCN - there is lots of help out there, if it all gets too much. Don’t suffer in silence! And try to hold on to the good things, e.g. your tumour has already responded amazingly well, that it just fantastic! ? And sometimes I have also found it good to treasure small things, like spring sunshine and flowers ?. I don’t know if any of this helps, but please remember you are not alone with your worries. ? Gaby xx
Hi Carly
Just read your post. So sorry to hear what you’re going through, I know it is incredibly scary. I hope by now you are feeling better and more positive…
I have ‘borderline’ tnbc ( HER2+ status equivocal ) so am going to be treated with Herceptin anyway, but may also have tnbc, ( more than one type of cancer ) positive nodes too. ( diagnosed Nov 18, then lymph nodes Fen 2019 ) I am about to undergo my second round of EC.
I have been doing a lot of reading, a book strongly recommended by a friend, ‘How to Starve Cancer’ by Jane McLelland - a really intense and initially scary but ultimately extremely positive book about the metabolic pathways that can feed cancers, and additional things to support your chemotherapy by blocking the pathways that supply cancers, things she did to treat her secondary cancer. She has a webiste and FB, page too.
You might also want to check out COC ( Care Oncology Cininc ) website, in Harley St, London. I just spoke to my oncologist about taking part in their clinincal trial using 4 off-label drugs. Might be relevant for you ?
I am 55 with 2 children, aged ( just ) 15 and 17. Worrying about cancer, and all the bad press about tnbc can be terrifying I know, but there is also plenty of positive stuff out there too… I hope this might be of help to you.
Chloe x
Carly my heart goes out to you :-(. Don’t be frightened. My sister had it 13 years ago aged 34 with 2 young children and although it hadn’t spread to lymph nodes it was pretty big. Not sure what stage but the tumour was 3.8 triple negative and she had 2 young children to cope with, lost all her hair, husband had to take time off work to look after her and huge financial impact as well.
She is still here and right as rain! In fact, she is better than ever! She had to have her ovaries out as well and a mastectomy but its a small price to pay. No one would ever know her breasts aren’t real and now despite having a mutant gene that caused it she will NEVER die of breast cancer of ovarian cancer.
I have just been diagnosed myself with exactly the same as she had. I see oncologist may 22nd as off on holiday today and will probably start chemo following week. Toying with idea of having mastectomy at the moment. Don’t give a stuff about ovaries coming out.
Not sure about you but for me it always helps to prepare for the worst then anything is a bonus! If i know i can cope with the worst then i feel fine! I was really frightened it had spread to my bones etc so i just thought what would happen if i DID die. There isn’t anything that you can do if that is going to be the case so you may as well accept it.
Treatments have come on so much since 13 years ago and when i googled the success rate as in people living for 5 years or more after STAGE 3 Triple negative cancer was 72%. Stage 0 and 1 was 100% and can’t remember what 2 was but again pretty good.
I hear much more positive stuff than negative so just try and be strong. Also, ,your tumour has shrunk lots already so that’s really good! I feel very positive for you :-). xx