Newly diagnosed with TNBC

Hi,

I’m just starting out on this roller coaster having been diagnosed with TNBC a few days ago. I was told that the biopsies, scans etc showed cancer in the lymph nodes under my arm, the breast itself and the skin (biopsy taken from a red mark about an inch above my nipple). To say I’m terrified is putting it mildly.

I have an appointment with the oncologist next week and will start chemo a week or 2 after that. I’ve not got all the details yet, I suppose that is what I’ll get at the oncologist appointment, but the consultant told me that I’ll have 6 rounds of chemo 3 weeks apart then I’ll have a mastectomy to remove the left breast. The consultant also said that I’d lose my hair and that surgery first before chemo wasn’t an option as they wouldn’t get it all away. 
I’m just so shocked just now and would welcome any tips on dealing with what’s ahead of me and any support, words of advice or stories of positive outcomes from anyone on here who’s going or has gone through a similar diagnosis and treatment. Thanks. 

4 Likes

Felixfelicis A good book that helped me was surviving triple negative breast cancer by Patricia prijatel, it’s not for everyone but really helped me, she is a 2 x tnbc survivor. Also Robin Roberts and Joan lunden were inspirational with their tnbc journeys for me too Enquire about a wig voucher with your team if you want to go down the wig route, also your Macmillan at your trust might do pre loved wigs that you could purchase for a donation, there are also turbans that others have purchased and hopefully they will pop on and advise on where to get those, I was a wig girl all the way. A silk pillowcase was gentler on head too after hair loss. Lots of us have donated hair to little Princess trust before chemo so if your hair is long enough you could consider this, also you don’t mention if your trust has given you option to use the cold cap or not? If it has others on here have and are using the cold cap and again could give you some advise hopefully if that’s another option you have. :two_women_holding_hands: Be kind to yourself you are trying to process all this and having to make quick decisions about things that you never imagined you would ever be doing Like I’ve said before Step by step and day by day you will get through, your way and what’s right for you You are still amazing you Don’t loose sight of you :two_hearts: :two_hearts: :sparkles: :sparkles: Shi xx

Hi,

Just thought id let you know,  that i too was diagnosed with multifocal TNBC in August 2016, i had a SLNB then Local Wide Excision to remove the lumps,  6 rounds of chemo,  3 weeks of radiotheraphy and finally Zoledronic Acid infusions! It all sounds very daunting at first but once you have your treatment plan in place you will feel better about it.

It is horrible at the beginning, feeling shocked,  worried and scared of the unknown,  but the chemo is doable and they give you all sorts of medication for the side effects if needed. 

I am now thankfully 5 and half years clear and have had no lasting side effects from the chemo.  I have had moments since,  where i have convinced myself its come back,  every ache or pain id be straight to the doctors - had chest xrays, abdo scans even a brain MRI, but as time goes by it does get easier.

I really wish you well with your treatment, if you have any questions let me know and i’ll help where i can.

Stay positive and take care

I was in your shoes 6 months ago and I am just coming to the end of my chemo road, getting ready for surgery.

11 years ago i had breast cancer and it was whipped out straight away because it was hormone positive so this time round, learning they were going to leave “it” in has been really difficult to get my head around. After a second opinion from an oncologist at Christies and  professor in Harley street - this is apparently the way to go. 

I used the cold cap the first time and this time and it has worked really well for me. So much so I have managed to hide my diagnosis from members of my family. 

The chemo has been a lot kinder than it was 11 years ago with huge improvements in anti sickness drugs and my only side effect has been constipation to which the nurses have promptly reacted and given me gentle laxatives. 

I was so angry when I got it again I stared off like you posting on here except mine posts were slightly more angry. I rang Macmillan and hung up on them several times because the couldnt answer my questions so this is definitely the best place for you. I have used the someone like me service as well and it has been really helpful.

6 months ago i thought my world had come to an end but now I can see light at the end of the tunnel and feel strong enough to try and help others. 

I do still get down days - You summed it up well as this rollercoaster and have recently posted myself with tips on how to stay positive. 

counting those sessions down helped. A third done, half way , 3/4 done and now im counting days .

Take care x