Anyone with TNBC in lower inner quadrant? Please need positive stories!

First of all I am sorry you are in this position.

My own TNBC was upper outer quadrant. It had spread to my liver but via bloodstream not lymph nodes. This wasn’t picked up until I happened to have a scan for other reasons part way through primary treatment. I went on to be treated in the metastatic setting and have been in remission for over 2 years. 

I presume your concern is spread via the internal mammary nodes. Hang on to the fact you had a clear CT scan. Even if a scan can’t show the nodes clearly it would certainly show any secondary deposits in liver, lungs, or in bones within the scope of the scan very clearly. My small liver secondary was easily identified despite the scan having been to look at diverticular disease. I had various other findings which were investigated and found to be benign.

A lot of prognosis information is very out of date. I never asked oncology for a prognosis but certainly Dr Google had me dead by now. And I am clearly not. It’s unlikely you will have secondary cancer but to reassure you there are lots more treatments nowadays, not reflected in Dr Google’s data. 

Thank you so much for your reply, I really appreciate it. 
firstly, I am so sorry to hear of your secondary diagnosis but so pleased to hear that you are currently two years in remission. This is amazing and very encouraging! Long long may it continue for you. I must admit I was under the impression that other than immuno and cape there weren’t that many treatments out there for stage 4 but hopefully I am wrong. I know about PARP inhibitors etc which sound very promising but believe they are solely for BRCA patients which myself and many others are not. Also my PD-L1 has never been tested so I have no idea whether immuno did/ would work for me. I just struggle with the limited treatments for TNBC and wish more could be done. 

yes, it is spread to the internal mammary nodes that I am concerned by. There’s a lot of research to show that patients with lower inner quadrant tumors are more likely to have spread there than the axillary nodes and thus have a poorer prognosis and this combined with the fact I am tnbc really concerns me. I know I need to live day by day and not consult dr Google but I find that really hard.
thank you again for your reply x 

Yes - I am fortunate mine is PD-L1 positive, so I could be treated with Pembrolizumab. I am not sure what percentage of TNBC is PD-L1 positive, but it seems an effective option for many of us that are. The PARP inhibitors are only for BRCA1/2 gene defects. I was not tested for those as I was relatively late onset (65) with no family history. Trodelvy is approved as a later treatment for all mTNBC. There are a lot of trials going on, mostly other drugs in combo with pembro. Hopefully you won’t need any of this. 

Hi Lis

i was diagnosed March 23 with lower inner quad TNBC . Had lumpectomy , chemo and radio and I’m doing fine !! Not had any scans at all and I have been discharged from oncology . I just have the yearly mammograms !! And have been told just to report any worries or concerns to them . Good luck with your treatment and don’t read up or google anymore as it will scare you to death . I was stage 1 lump 1.6 mm 

Hi, just wanted to share my positive story with you. Diagnosed Feb 23, 4cm tumour with nodes, stage 3 grade 3 in lower left quadrant. All the usual chemo,op and radiotherapy. Just had my 2nd monitoring mammogram and all clear. Try not to look at the facts and figures , this is your story and not anyone else’s. I hope you’re getting through things but just wanted to share where I’m at xx

Hi, thank you so much for your reply. I am so pleased to hear that you are doing well and have had another clear mammogram. If you don’t mind me asking, were the nodes involved the internal mammary nodes or the axillary ones? Did you have a lumpectomy or mastectomy? I had a lumpectomy in September and have now completed radiation. Thank you so much. I’m trying my best to not read up on stats so much but find it hard but am trying to stay positive. Thank you so much for taking the time to reply to me  x 

1. Hi. I had a lumpectomy, had full auxiliary node clearance. Node in collarbone and chest bone were zapped with radiotherapy! I joined a local cancer support group who I’ve found a great support. In fact 15 of us are doing the ‘full Monty’ this weekend to promote check your boobs at a charity fundraising event! . The data you’re looking at is old and doesn’t reflect the massive changes and treatments for triple negative so try not to focus on percentages etc. keep going, one day at a time, and you’ll get there. Wishing you all the best. Here if I can help in any way xx

Thank you for your reply. It’s good they gave you radiation to the collarbone and breastbone. I had asked for that radiation too as was worried about spread to the internal mammary nodes due to the lower inner quadrant being nearer to those nodes but they refused as no positive auxiliary nodes were found. My concern was that it could have spread to the internal nodes first as opposed to the auxiliary ones but they said no. It still scares me now so I’m planning to pay for private chest mri’s regularly to check them! 
wow that’s amazing! Good luck for this weekend, I hope it all goes well  x 

This is reassuring to read! Mine was 4cm too (but clear nodes). I had a partial response to chemo though which really upset me x

Hi

its so tough isn’t it? We hope that the chemo will blast every bad cell!! Did your oncologist say how much of a response you’ve had? I had chemo first then op and then radiotherapy. The radiotherapy was 15 sessions to breast collar and chest bone area to ensure ( as much as possible) that any stray cells were targeted. 
please talk to your team or breast care nurse , they can hopeful allay your worries. Hang in there , sending you a ((big hug)) xx