I was diagnosed on Wednesday with grade 3 Triple Negative, early stage, so the news is still sinking in and doesn’t feel real although a part of me knew there was a chance because I was told it looked suspicious at the clinic.
The lump is approx 29mm, upper left quadrant with no axilary spread and was told it’s 100% treatable
Have my first oncology appointment Tuesday but I have been advised the likely plan is 4-5 mths chemo and immunotherapy then lumpectomy surgery and radiotherapy.
Would be good to chat with others going through the same, especially about genetic testing which I am going to have.
Hi Misty
Just to reassure you my daughter, with a young baby 12mths had the same TNBC diagnosed almost exactly a year ago. She was given a complete pathological response at Christmas and is now living her life again. We won’t pretend it was an easy year. She was given the ‘gold standard’ treatment of Chemo & Immunotherapy, EC a double mastectomy and full lymph node removal on one side and then followed up with more immunotherapy as a catch all preventative measure. You can do this. Stay strong and keep positive.
Sorry missed talking about genetic testing. My daughter had the test. Despite there being no knowledge of BC in the family. It came back positive for the BRCA1 gene! Which is why she had a bilateral mastectomy. Without that test she would have only had one breast removed and the chances of it recurring in her other breast would have been very high. If you are offered the test then do it!
So sorry for your daughter having to go through all the trauma of the cancer, must have been a very worrying time for you all but thank you for telling me about her successful treatment, it helps with the positive thoughts.
I’m definitely going to have the genetic testing, am going to get the ball rolling tomorrow after my MRI scan then I meet with the Oncologist on Tuesday.
Still doesn’t feel real, maybe it never will properly!
Do you know if they always remove the lymph nodes or is that in certain cases and if you don’t mind me asking, did your daughter have many side effects from the chemotherapy and immunotherapy?
Misty sorry you find yourself here I was tnbc but did not carry brca gene, there such a lot of decisions you’ll be having to make, take everything on step at a time a treatment at a time, treatment for tnbc has changed a lot since I had mine back in 2017-2018 do remember your treatment is tailored specifically to you do think about joining the chemo threads when you start get your teeth checked out before starting chemo and sorry if tmi, get some laxatives, anosol and baby wipes, the steroids can block you up Shi xx
Hi again Misty. So to answer your questions about the lymph node removal. In my daughters case, they knew early on that one of her lymph nodes was involved and swollen. However after all her chemo/immunotherapy the tumour had disappeared and the lymph node appeared to have have been cleared of cancer (they put a marker there I think). So when it came to the operation the risk to leave the rest behind was too high. They knew at that stage she had the BRCA1 gene. I’d ask your Oncologist about that or anything else you’re worried about.
In respect of side effects she did have serious issues with constipation which at one point put her in hospital. Side effects from the immunotherapy was joint aches. A bit like having arthritis, but she coped. Immunotherapy can cause inflammation everyone is different though. Steroids helped her with this. Wishing you all the best of luck. Take one day at a time and know each morning yesterday is behind you and you’re slowly climbing that mountain. You’ll get to the top. Believe. xx
It sounds like your daughter had a really tough time with her battle against the awful disease. You must be so proud and happy that she fought it so well and her baby will be too.
Time will tell with regards to side effects for me, I have my list of questions ready for the oncologist.
I do appreciate your time in replying and wish you all the very best and a lifetime of good health. xx
Hi Shi
Thanks for your reply and sorry you have been through this too and hope all is well since your diagnosis and treatment.
I do have some dental work planned in around three weeks time so will speak to the oncologist about that to check if this can go ahead, along with a few other questions.
Will definitely join the chemo thread once I’ve started the treatment and will stock up on the items you have mentioned. Am going to look into any recommended foods to add to my diet as well and keep up the multivitamins.
I was diagnosed with grade 3, stage 2 TNBC in September last year. I had chemo & immuno from October to March. This was successful and I went into surgery with no trace of the tumour on the MRI scan.
I ended up having a double mastectomy with immediate diep reconstruction as I turned out to be a BRCA1 carrier (otherwise would have been a lumpectomy). I am due to start 9 cycles of immunotherapy on the 19th June just to catch any remaining cancer that might be floating around although I very much get the impression that this is a belt and braces approach (as well as being the standard protocol for TNBC). I’ve had a pathological complete response and there doesn’t seem to be any cancer left in my body.
My sister got tested for BRCA and was fortunately negative. I have an 8-year old daughter and she will have the option to get tested in her late teens.
I hope you are bearing up. It is A LOT to process. I got by by ticking things off day by day and not googling!
Sorry you have gone through the same, you’ve certainly put up a strong fight with a great result.
It must have been a relief that the genetic testing was negative for your sister, and fingers crossed the same result for your daughter. Hoping mine comes back negative otherwise like you, my daughter, sister and brother will have to endure the anxious wait for results if they get tested.
I’m doing ok all things considered, keeping busy, avoiding the negative google stuff and staying positive.
Best of luck in your recovery and hopefully immunotherapy will be a breeze for you x
Hi Misty, I was treated for grade 3 triple negative breast cancer 10 years ago. My genetic test was negative. My dear, now the triple negative treatment protocol is clear. Go ahead step by step with your treatment team. Stay positive and strong.
A book that helped me was surviving triple negative breast cancer by Patricia Prijatel. It’s not for everyone but it helped me, she is a 2 x TNBC survivor. Shi xx
Hi I’ve just joined the forum and was in the same position as you just over a year ago. I had about 6 months chemo followed by surgery then radiotherapy for 2 weeks. I’m about to start on chemo/immunotherapy tablets for 18 weeks. The chemo was the hardest for me good and bad days not bad enough to stop me getting on with things but really tired and loss of appetite. I tried the cold cap a few times but really couldn’t get on with it and lost all my body hair, however it’s all started to grow back now. Definitely take the laxatives lol. I wasn’t advised about effects on teeth and subsequently had to have an extraction just before radiotherapy started.
My genetic testing came back with no variations which was lovely positive news for once. Good luck with your treatment and listen to your body - let family and friends support and help you along the way. Oh and definitely call your breast care nurses for any advice.
hello usuallyhappyme
i hope it is ok, to reach out to you ?! i just read through all the posts on this subject and it seems you and your daughter are in a similar situation like my daughter and i- as her mum. (minus the wonderful baby)
it sounds a total crazy full on scenario for your daughter… she serioully has gone through a lot in such a short time…
i have the feeling, that my daughter probably will have to go a similar way.
she is 28 and was diagnosed with grade 3 ,TNBC in march this year and on sat she had the genetic test results, which came back- unfortunately- as positive for BRCA1
my son and i will get tested now too. also my husband and his brothers. but i have the aweful feeling, that the faulty gene comes from my dads side of the family. i spoke to my son earlier- who studies in sweden atm- and it is interesting how things are dealt with in other countries. he simply has to bring his sisters BRCA1 results and himself. they dont want any family history of cancer at all. they also did tell him, that he personally should not worry too much regarding himself but that the issue could be more significant for daughters- if he ever should have children- because in that case he could pass the faulty gen on and put daughters into a higher risc of developing breast or ovarian aso cancer.
regarding my daughter. when she was diagnosed in march and produced the knowen cancer history, she was already told then, that IF she should have the faulty gen that with her type of cancer it would be strongly advised to have her breasts removed and later in age (around 40) to also remove her ovaries aso. having the definite BRCA1 positive result is another humongous impact on all she is dealing with already… she has an appointment in the beginning of july with the genetic team and i suppose that is when the proper impact will hit…
thank you so very much, for sharing all this on here, for everyone to read. it gives me hope, that good and positive can come out of a rather overwhelming diagnosis
i would like to wish your daughter all the best, strength, HEALTH and happiness -able to enjoy and live her life to the full and to you, being able to be part of your incredible daughters and grandchilds life !
all of you stay safe and take good care of each other…
positive greetings,
T
Hi @Templar-1310 I am so sorry to hear you and your daughter are going down the same journey. The best advice I can pass on is to be thankful that every day is one step forward and will get you back to the top of the mountain. Although my daughter was nervous about her bilateral mastectomy (with implants) in the grand scheme of things this wasn’t too hard for her and was glad once it was over. Getting used to having breasts with no feeling in them, was a bit weird for her but not painful, as they were basically numb. Your daughter WILL get through it. Believe xxx
I was tnbc but did not carry brca gene, there such a lot of decisions you’ll be having to make, take everything on step at a time a treatment at a time, treatment for tnbc has changed a lot since I had mine back in 2017-2018 do remember your treatment is tailored specifically to you 
