Hi there my name is Adrienne I am 29 married mother of 3 (10,6,2) I was just recently diagnosed with stage 1 TNBC on 2/12. I am absolutely terrified. Everything I read about it is absolutely horrible. I was ready to deal with breast cancer when I got the diagnoses but then yesterday they said it is TNBC. That felt like a death sentence. Anyone else feel like this? I go Tuesday to discuss surgery. I look at my children and jus begin to cry. I know it’s treatable with chemo but it’s th fact that it can come back sooner that scares me. Please someone share some positive stories with me.
Hi Adrienne and welcome to the BCC forums
I am sure the support here will help during this difficult time for you, please also feel free to call our helpliners for practical and emotional support, they are on hand for you to talk your concerns and fears through. Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
Here’s a link to the further support and information aimed at younger women which I hope you will find helpful, BCC run residential weekends ‘Younger women together’ where you can meet up with others and share support, you can read about this and more via this link:
breastcancercare.org.uk/younger-women
Take care
Lucy BCC
Hi I was diagnosed with tnbc in 2013, luckily it didn’t go to my lymph nodes. I had a mastectomy and 6 rounds of chemo, no rads.
This week I’m having my remaining breast reduced to match my reconstructed one.
There’s statistics for everything if you go looking for it most of it is a load of rubbish or out of date so please for your sanity stop googling. I have been told that yes there is a slight greater risk of it coming back than there is for positive cancers in the first 5 years but unlike other cancers after 8 years the term cured can be used ?
thank you,I’m glad to find someone else that has gone through it. Is everything going good with you now? My husband also told me to stop googling it. I have seen a lot of the info is at least a couple yera old. I’m hoping that there has been at least a few improvements with the treatment. The only positive I have heard about TNBC is that it usually responds better to chemo. I’m thinking I will end up doing a complete mastectomy that way I can avoid radiation just incase it decided to come back in my breast in the future I could do radiation.
That’s very good to hear I only have one tumor and its about 1 1/2 cm so it’s small enough for a lumpectomy but like I said if I can hold off on radiation just incase a future reoccurrence then that’s what I think I will do. How was the recovery for you?
My reasoning was that I read that you can only have radiation on an affected area once in your life- and say I have a lumpectomy with chemo and rads then in the future the cancer comes back it wouldn’t be an option to do rads.
hi Adrienne,
I too was dx tnbc 18mths ago and had chemo,lumpectomy and rads and I was told the same as sue by my bc team re research.
having a mastectomy does not guarantee not getting rads, I was going though treatment with a lady who had tnbc also and had chemo,mastectomy and rads.
Its best to listen to your team as to what they feel the best treatment plan is for you and then make an informed choice.
Wishing you well in your treatment and recovery
Wyn x
Thank you ladies. I’m very scared. Trying to stay calm.
DONT GOOGLE!!! that is the biggest and best piece of advice I can give you. We alldo it when newly diagnosed, but since my diagnosis in September with Grade 3 triple negative, I have learnt that most of the info is completely outdated. I had a 1cm tumour removed by lumpectomy, every bit as effective as a mastectomy, with no node involvement.
I think the hardest thing to get your head round, is the amount of chemo you will probably have to have. This is because it reacts so well to it, better than hormone based bc.
I have had 4 x 3 weekly doses of EC, and now I am in the middle of 12 weekly doses of Carboplatin/Taxol. This is a reduced dose, so much easier than the EC. This regime is so new for Triple Neg, that I am one of four woman under The Christy Hospital, that has started it. It just proves that things are improving and changing all the time, and my oncologist is firmly convinced that this is a superb treatment for TN, and a cure…
You have to trust your onc, and think very carefully about the mastectomy… its yet another procedure to get through…
Please feel free to ask any questions regarding my experiences. I promise you once you get underway and start, you will gain some strength, its the waiting that the hard bit…
All the best xx
Well I just got my genetic testing results and it showed that I am a carrier for the BRCA2 mutation so I will have to end up with a bilateral mastectomy and probably my ovaries out. When I mad my Mri it doesn’t show any thing in my lymph nodes but they will have to do a sentinel nope biopsy to make sure. I have stopped googling it because it was very depressing. Now I try to find survivors stories online to give my positive inspiration. Thank you very much for the advice:)