Hey everyone, I’m 46 and was diagnosed last Wednesday and as you’ll all know it’s been a whirlwind. I’ve had an MRI and have a CT scan next week, some markers being fitted and other appointments. I’m grade 3 I think from my letter but that wasn’t discussed when I got my results but a little confused as 2cm tumour and a “few cells” detected in lymph nodes which aren’t swollen or anything but I thought that would make me a lower grade. I believe that’s because it’s triple negative but now I’m panicking that’s it’s growing as I sit here and there’s nothing I can do. I’ve had like tingly shooting pains (originally thought I had mastitis type infection or child related injury when this started at christmas) and these have got worse since my biopsy. Been told to stop hrt and have coil removed but do I need too if it’s triple negative? I’m not sure what’s normal and what isn’t. I’m just a bit overwhelmed tonight if I’m honest. I was feeling fairly positive earlier today and then started looking into triple negative more… I just need some positive stories maybe. I don’t know.
Hi it’s such a whirlwind isn’t it and so much info to take in. I’m 43 and found I had a 15mm triple negative lump in October 24. I’ve had a lumpectomy and reconstruction my lymph nodes and tissue margins were clear and my genetics have come back no genetic cause. I’m twelve weeks into a 20 week course of Chemo once that’s over I’ll have Radiotherapy. That all sounds a lot but I just take one day at a time I don’t think too far a head because it overwhelmed me so a day at a time makes it easier to process and I think as positively as possible no room for negativity. Make sure you eat well drink plenty of water, get fresh air and your medical team will get you through this. You will smash it xx
Thank you, I’m sorry you’re going through this too. I think reading the doctors letters earlier just threw me as they’d mentioned they didn’t think it was hormone receptive but hadn’t said the actual words TNBC and then husband googled and it all became a bit much again and caught me off guard. I’m naturally a pretty cheery person and not one to wallow or self pity but it’s been a lot this week.
When I was told it was Triple Negative I read up on it that night on line and went down a very dark rabbit hole of information it’s so easy to do but I try not to do that now. I can’t believe how quick time goes feels like yesterday I had my operation I’m almost 5 months down the line now it will fly by.
I forgot to say after my biopsy it felt like my lump grew in size. It went from being really hard to find to huge and tender i asked them to check me over they said it was some internal bleeding and a reaction from the biopsy but assured me it hadn’t grown which put me at ease during the weight for my opp. X
Sorry to hear of your diagnosis. I’m also triple negative - diagnosed last March and coming out the other side of treatment now. Do you mean Grade 3 rather than Stage 3? Because TN is fast growing it’s nearly always Grade 3. The good thing is it tends to respond very well to chemo. Mine shrank quickly after a couple of cycles and I could feel that it was getting smaller. Once you start your treatment you will feel a bit more in control of everything, good luck x
@ktg2025 I’m sorry that you find yourself here. This is the most difficult time. Somehow it becomes easier once you know exactly what your treatment plan is.
Please try not to Google if you can avoid it as it often leads you down into a dark place and also it often contains inaccurate information. Much better to get it from the horses mouth at your appointments as treatment is planned for you individually so what others have may not be relevant.
Im wondering if you are muddling stage 3 with grade 3? The stage is how far the cancer has spread and the grade is how abnormal the cells in the lump look, with 3 being more abnormal than 1. They often don’t give a final diagnosis of breast cancer type etc until after surgery as the biopsy is only a tiny sample.
It is easy to feel overwhelmed. In the 3 weeks I waited between the surgeon’s appointment and the CT scan I convinced myself that it had spread to every cell in my body! Of course it hadn’t 
As for a positive story - my sister in law had triple negative breast cancer 14 years ago at the age of 51. She had surgery, chemotherapy and radiotherapy and has had no problems since. At the moment she and my brother are on a 3 month trip around South America. They are currently off grid in Patagonia for 3 weeks 
Good luck! 
Tnbc is treatable and your team have seen it all before, please hold onto this when you are diagnosed with any type of breast cancer it is a place you never expected to find yourself then you hear tnbc and start googling trying frantically to find out at much as you can, I know I did when diagnosed in 2017. There is a lot of old information out there on the web and I can tell you this tread are changing all the time as they discover new options and your treatments are tailored specifically to you. A good book that helped me is surviving triple negative breast cancer by Patricia prijatel a 2 x tnbc survivor. It’s not for everyone but it helped me. There are lots of tnbc survivors out there and a lot don’t use the forum anymore just wanted to send you some hope as you step into treatments, use the forum, use it as much or as little as you need, everyone’s here and will listen and reach out if you ask 
take it a day at a time, step by step 
Shi xx
Sorry typo above treatments are changing all the time Shi xx
To answer your question about having to stop HRT - that is because even though it is triple negative it might be mildly dependent upon oestrogen and/ or progesterone so they don’t like to take any risks. I had triple negative that was older than you so wasn’t on full HRT, but I was on an estrogen pessary because I had the vaginal atrophy but I was even told to stop that and go on to a non hormonal treatment. Mine had spread into my lymph nodes so I had to have a full lymph node clearance but hopefully yours has not spread that far.
Are you sure that is the stage and not the grade, I know many people are confused by this.
Yes grade you are quite right. I’ll edit my original post.
I have mirena coil, oestrogen gel and pessary. It’s the pessary I’m actually the most worried about stopping as I was suffering with all sorts of issues that completely resolved for me with that. I also take starflower oil and lions Maine which I started because of breast pain and brain fog and the nurse seemed unsure if I should stop those so have done for now but the fear if all of those issues on top of all the treatment side affects is stressful
@ktg2025 my breast cancer is strongly oestrogen positive and mildly progesterone positive. I too was having vaginal oestrogen cream for vaginal atrophy. I stopped it when I was diagnosed but within 2 weeks was in a lot of pain, sex was impossible and it felt like I was sitting on pins. I did lots of research, and spoke to a gynaecologist. The upshot was that minimal to no oestrogen is absorbed when given vaginally. I felt that I could do without being unable to sit comfortably in addition to chemotherapy side effects etc so I restarted it.
.
Hi @ktg2025
So sorry you have joined our club, that no one wants to be a member of.
I too was diagnosed with grade 3 triple neg bc. Mine had spread into the one node that they tested.
I have had surgery and currently having 6 cycles of chemo, to be followed with 15 radiotherapy sessions.
It is a very scary time and I too became Dr Google and although I think it can help you prepare for the worse, I believe that you can get drawn into every worse case scenario, which actually rarely happens.
Keep positive hun, it has really helped me.
Take every step and treatment one at a time.
Then pat yourself on the back after every one and see it as an achievement. One down, one less to do etc.
I too take Lions Mane and the hospital pharmacist referred it and agreed that I can keep on taking it.
This is a fabulous site, so helpful and supportive.
You are not alone x
Hi @ktg2025. My daughter was diagnosed with triple negative breast cancer last July. She was just 30years old with a toddler. She has been through chemo with immunotherapy, EC and bilateral mastectomy with all lymph nodes removed on one side. She received a Pathological Complete Response in January and is now Cancer free! Please hold onto this. It was a hard year and of course I hate the idea of anyone having to go through this but she is now in a really good place. On the very last lap of having some more immunotherapy on it’s own. By August she will have this all finished and be ringing that bell!
Best of luck, stay strong and try to ignore any negativity. You’ve got this 
.
Just a bit less worrying hun, not picking xx
Oh bless her! And you for having to go through that worry as a parent, I found telling my parents really hard, my kids have been troopers but I don’t think they fully grasp anything yet because nothings changed for them other than they’re no longer
going to Mexico at Easter which actually they’ve also been fine with but gave me mega mum guilt! But my mum and dad… they’re being great but the initial panic in their voices will stay with me.
You probably don’t need to stop HRT when TNBC and there’s even some debate now about whether it’s ok to continue on ER+ BC. I’m certainly hoping to continue with mine and I’m currently in debate with GP surgery about it, but you may as well shoot me now if they won’t give me it as my life won’t be worth living.
I would reading Oestrogen Matters by Avrum Bluming as it’s really well researched. He’s an oncologist and BC surgeon. It might help inform your decision making.
You definitely don’t need to stop oestrogen cream with either TNBC or ER+BC
This is the thing. I did tell myself it would likely be fine and I have bigger stuff to worry about but my pms has been mega unstable this week. Took my brain to some awful places - I couldn’t tell what was diagnosis processing related and what was hormonal. Feeling better today but not being my stable best self during this really isn’t going to help me get through it all.
I would make sure you get good medical advice regarding hrt. Some triple negative breast cancers can start out as hormone positive and then the markers change and become negative. There is also the possibility of developing a hormonal cancer in the future too. That said, oestrogen gel is allowed and could be a good option for you. I’d really recommend the following book ‘A SURVIVORS GUIDE TO TRIPLE NEGATIVE BREAST CANCER’ by Michelle Solak-Edwards. It’s up to date and covers everything TNBC related, including HRT. I have the FB group set up by her to be really informative too x