Diagnosed at 42 with TNBC

Yes it is all very frightening. I am 71 and refused chemo and had lumpectomy and radiation. I feel fine now - post radiation about 8 weeks - but obviously the future is uncertain. I suppose my brain can't, fortunately. maintain a constant degree of worry about it  - best to try to live what life we have. Very good wishes to you.

Hey, I’m 42 and finished my treatment for triple neg on Tuesday last week. I had 7 cycles of chemo, then a lumpectomy and lymph node dissection and then 20 sessions of radio. I was tested for the BRACA gene at the beginning of my treatment, this was routine so it’s probably worth asking your nurses if you’ve been tested as they just took an extra sample of blood during my routine blood tests. Both my surgeon and oncologist said the chances of recurrence is no better if I had a mastectomy rather than a lumpectomy so I trusted them and had the lumpectomy.

The advice I could give you is, just trust your team, these people are amazing and do everything they can to make you better, accept the treatment they prescribe and stay positive. My surgeon told me when he gave me the results of my operation that he believed my attitude played a massive part in the results I got, he believes that if we are positive it makes a massive difference, don’t give up, kept fighting. He’s been in oncology for a long time, so I believe him. Good luck, you’ll do amazing xx

Thank you for your message Vibraphone . Glad to hear you have finished your treatment and wish you all the health & happiness for the future x

Hi GeeC thank you so much for your lovely reply .sorry that you found yourself in the same situation, what a horrible and scary time.  So glad to hear you have finished your treatment . Did you have spread to any of your nodes? Do you have the BRACA gene the ?  I rang genetic councillor on Friday and she said they would go on ahead and do the ATM test due to the family history and if it comes back negative then they will do the BRACA for me.

i hope you are not feeling too dreadful after your treatment can I ask how the chemo was for you ? Meeting my oncologist for first time on Wednesday, obviously dreading the thought of chemo but hopefully won’t be too bad.

you have given me a kick up the bum with regards to my positivity so thank you!! Just feel scared & im still recovering from my surgery, the wounds are fine it’s just my restricted movement from node clearance that is causing me problems.  Think once I feel more healed physically it will make me mentally stronger .

i must research and see if there is a cancer positivity book in order to help me improve my mindset. Sick of reading grim stuff!!

Thank you again for your Reply and I wish You all the health and happiness for the future xx

I had 7 nodes removed and they were clear, I was very fortunate that on all scans, mammograms and mri they appeared normal from the beginning of my diagnosis. The chemo was ok, I was lucky with the side effects and felt well throughout, a bit tired and losing my hair was rubbish but that’s already growing back  The radio made me tired but again, nothing too terrible, just listen to your body and eat and drink as normally as you can. I counted down each treatment and had a mini celebration after each one, any excuse hey? 
I don’t have the BRACA gene and there’s no history in my family of this pre menopause so goodness knows where it came from but, it did and what can you do except listen to your doctors, they know what to do, I hope your meeting goes well with your oncologist and you can start ticking off those chemo sessions xx

Hi there. Bless you. I was diagnosed with tnbc in dec 2018.l when I was 38.  I had 3 tumors in the end that were removed by lumpectomy and full node clearance with 2 malignant mid dec ‘18. Clear margins. I then started chemo first week of jan ‘19. In feb genetic results came back as brca2 positive. So had 4 x EC every 2 weeks and then 12 weeks paclitaxel and carboplatin. (Carbo is given to us genetic mutants so you won’t have that if genetic result is negative). I then had a double mastectomy as preventative (no benefit over lumpectomy to this cancer but for my peace of mind as I want to reduce the scans I have to suffer going forward and to prevent a new breast cancer). No recon by choice and then 3 weeks radiotherapy ending sept 19. Also had ovaries and tubes out oct19 due to BRCA  status. Could have left that for a few years but I wanted it all done ASAP.

it’s a scary journey but it’s doable. I’m almost 2 years out from diagnosis and currently doing really well . Risk of recurrence drops after 3 years and again massively after 5.

don’t worry about chemo before surgery it’s what I did. I liked the idea of having tumour out of my body ASAP. As far as I could work out in terms of survival whether chemo is before or after is fairly irrelevant. It does sometimes impact on whether a lumpectomy is possible (so shrink tumour first to allow lumpectomy rather than mastectomy). Also if you do chemo first and there is still cancer left after at time of surgery you qualify for further oral chemo (capecitabine). I didn’t qualify for that as had cancer taken out before chemo. But I may not have qualified anyway if I had a complete pathological response to chemo.

a positive genetic result is upsetting but it does give more options for treatment. 

I know this is a lot of info and you’re head is probs spinning as such early days. But just know I was where you are now 2 years ago and doing ok!! Xx good luck!

Hi Jane80 firstly I must apologise I am only replying now, for some reason I didn’t get a notification that you had commented . My goodness you poor thing you have had a very rough timethat is a lot for you to take on / deal with in such a short space of time, you are one strong lady.  I am delighted that your treatment is all finished and you are doing well.
I was with oncology last week & I am starting chemo Friday week FEC-T, 6 sessions 3 weeks apart.  The nurse took my blood to Send to genetics last week, not sure when I will have that result back annow I’m worried that I could be on the wrong treatment if I do come back as having either ATM or BRACA gene.  So much to think about and take in.

If I do come back as having faulty gene, like you I know I will want to get all the preventative surgery, the thought of ever having to go through such a traumatic event again just fills me with dread.

thank you so much for your lovely reply so nice to hear positive outcome stories, I wish you many years of health & happiness xx

Hi GeeC thanks for your reply . So glad that all your nodes were clear . Brilliant that your hair is growing back too! Yay!! I am getting my eyebrows microbladed on Wednesday & going to pick my wig afterwards....how my life has changed!!
can I ask which chemo you got? I am starting on Friday 4th, 6 sessions 1 every 3 weeks of FEC-T......scared stiff!!
xx

Hi! I’ve only just seen this...there doesn’t seem to be any notifications! I hope you’re doing ok. Just wanted to say I didn’t get my genetic test result until one month after I started chemo. They put me on EC first and I would have then had the taxol three weekly but by the time I finished EC the result was in so I had 12 weekly taxol with carbo. Whatever the result you’d have the FEC first I suspect it’s just whether they add the carbo and do the taxol weekly. They will probs decide when the result is in. Weirdly I wasn’t that bothered that I was positive. At least there was a reason why  it happened to me and I could get more chemo! I am the weirdo who just wanted as much as possible .... cried when she insisted we miss a couple of doses due to neutropenia....glutton for punishment! Xx

I had 4 cycles of weekly paclitaxal, (16 weeks) on the first week of each cycle I also had carbo with it. Then I had 3 cycles of EC which was one treatment every 3 weeks. I had quite a lot of chemo and an extra cycle as I’m part of a trial for triple neg.

i hope you’re doing ok? xx