Just diagnosed with aggressive triple negative

Hi everyone, I’m new to this but here goes. Last week I was diagnosed with primary breast cancer but had to wait for further tests. Today I have been told I have aggressive triple negative grade 3 in left breast and lymph nodes, I have been advised to have chemo 1st then surgery to remove lymph nodes and lump in breast. Feeling very scared. Anyone else been through this ?

Hi there
How are you today - this thread seems to be very quiet - I am not triple neg but have aggressive grade 3 her2 - I am a member of s Facebook group and many of the ladies ars triple negative and going through chemo first that may be able to advise you / I’ll message you details xxx

Hi Kaicorie,

Sorry to hear you’re going through this, it is such a scary time, but there are others here with a similar diagnosis to you.

As well as fb as lilneenz says, if you want to, do have a look at the other threads here, including the ‘newly diagnosed’ thread & the ‘going through treatment’ board where you will find the chemo & monthly chemo threads where you can join others at the stage you’re at. 

There is also the helpline above, if you need to talk things through. 

hugs

ann x

Hi thank you both for your response, I feel a bit more positive today after reading posts on this forum. I’ve also checked out the face book forum. Thanks again for your help 

H Kaicorie, sorry to hear of your recent diagnosis and welcome to our friendly club which we’d all rather not be in. I’m 48 and was diagnosed with grade 2 locally advanced invasive ER+/her2- at the end of March.  As the tumour is 50mm with diffuse margins and also 4 local nodes testing positive, chemo was not optional it was essential.  I just had my second chemo, 2 of 8 and will have an mx at the end. Whilst it’s a lot to get your head around early on, once you’re into the treatment it gets easier to deal with. I’ve coped well with the chemo, with minimal side effects. Your medical team are amazing so try and focus on you and getting healthy for treatment and find ways to distract your mind a bit. I’ve learned to get into relaxed mode by doing things like craft, reading, herbal teas, aromatherapy etc. Coming on this forum has been great for feeling less mentally isolate too. Take care. X

Hi there I am 7 weeks post TNBC diagnosis. I too am having chemo first which started for me this week. Now on day 5. My oncologist told me that this type of cancer responds well to chemo hence why it’s usually given first. I am on 3 cycles of EC and then 3 TAX. I am coping fairly well at the moment with the odd side effects. This limbo time your in is the worst. Once your team have a treatment plan in place for you things become a bit clearer. We are all here for you should you need a natter xx

Hey again. My GP wanted me to go back and see him after 10 days as I’m only 31 so everyone thought it was nothing. Even when I had my ultrasound they said it looked like nothing, until the results came in. Thank god my husband made the GP me because I may have not gone back after 10 days. Keep in touch with us and let us know how you are getting on xx

Hi Kaicorie, I to am triple negative. I’ve had my surgery and will have my 2nd cycle of chemo on Wednesday. Please don’t Google about tnbc it is all quite negative. I completely understand about you being scared. I went through anxiety and couldn’t eat but you will get through this. I was diagnosed in Feb and it use to be the first thought every day all day. Don’t get me wrong I’m still struggling but you learn to deal with it. Once you know what treatment you are having and it starts you will feel more positive and feel like you have some controld over what is happening. Stay strong xx

Hi im new to this too
Diagnosed oct 2016 tnbc - not spread to lymph nodes.
Have had 6 chemo - 3 fect and 3 doxitacsal 2 ops to remove tumour - 1st attempt did not take enough of a margin 2nd attempt i was given the all clear and 1st lymph node removed.
I am on day 15 of 20 radio therapy.
Has been a tough 9 months but can now see light at the end of the tunnel ?

Yes, i just spoke with my team of doctors yesterday and the told me I have triple negative breast cancer with lymph involvement. They think it’s stage 3 but won’t know for sure until I have an MRI, PET scan and ct scan. I’m very scared. I’ve had panic attacks and keep having tingling and warmth sensations in my crotch and abdominal area and my stomach feels in knots. I also started having diarrhea. I feel as if my cancer is all over my body. Does anyone feel this way?

Keep going gizzy you are almost there x

Hi cruzita. This is the worst time waiting but you will calm down once you have more information and a treatent plan. Tnbc is usually always classed as stage 3 because it’s aggressive so don’t worry too much.

I too wenth through all your emotions and was convinced it had spread. I had a new sympton or pain every day but it hadn’t. A lot of it is stress and anxiety and it can show in the body in a number of ways you don’t even think of.

Try to stay positive , keep in touch and let us know how your doing x

Hi Cruzita, I feel for you I really do, I felt exactly the same felt pain everywhere. The waiting is the worst, i calmed down a lot as time has gone on and I start my 1st chemo today. Sending big hugs xxx

Sorry I did mean grade 3 not stage. I had chemo yesterday and have chemo brain so please forgive me x my tnbc is stage 1 grade 3 x

I am also tnbc, had a 3cm lump but no obvious lymph node involvement. I was also told tnbc is always classed as Grade 3, because the cancer cells are so very different from the normal cells. Three EC chemo sessions have reduced the lump to 1.5 cm so far.

 

The early days are really difficult,your mind works overtime and you imagine all sorts of things. It does get easier and once you have a treatment plan and realise what can be done you’ll feel much calmer.

 

 

Thanks for your comment . I feel better now. Waiting for MRI, CT and pet scan results. Will see my oncologist Monday. I am afraid of the results. But still hoping it hasn’t spread.

Thanks for your comment. Trying to stay positive. I’m scheduled to have my port in by July 3rd. Still not sure when chemo will start. Will see my oncologist Monday maybe she will tell me then.

Hi, I understand what you are going through. I felt a lump mid April and I am still waiting to start chemo. The waiting is nerve-wracking, but there are so many tests that are necessary before starting treatment. But we need to have faith and stay positive. Wish you the best take care.

Hi I’m TN too but reading through the threads I have noticed different trusts must do things so different I have not had any pet scans mri or cat just my original mam ultrasound and biopsy at beginning I’m now post op 5 weeks with 1 me static node tumor as well as invasive ductal tumor removed WLE and 5 nodes out waiting to start chemo, seems we all have had different treatment pathways x I can’t understand why I I never had a scan of any kind I would like to have had them x

Do check with your team, Mishy, but maybe they have the info needed for your treatment plan. With MRIs for example, it’s not routine for everyone, only those with a lobular bc diagnosis or maybe dense breasts.
ann x