Stage 4 TNBC

Watto

Hello. 

My first time posting in this group. I’m 39, mum of two children. Was diagnosed with Stage 3 breast cancer in Nov 2018, originally hormone receptive, of which I underwent 6 months chemo, bilateral mastectomy and aux. clearance. Testing from remaining 3mm of cancer after mastectomy revealed triple negative. I am BRAC1. Off for 5 weeks radiation, 6 more months of chemo via oral tablets, ovaries and Fallopian tubes removed, and then sent off with tamoxifen in case I was lucky enough to have had both hormone positive, and triple negative breast cancer. They could never determine from original biopsy.

After feeling off and a niggle in my back scans have revealed a small met in my spine. I am waiting for a PET scan to show any other involvement. I am so terribly devastated and feel quite hopeless. My kids are only 5 and 7. I lost my mum to ovarian cancer at 18. 9 months after my breast cancer diagnosis my sister Kellie was diagnosed with ovarian cancer.
 I don’t know how to feel hope that I may be around for a while yet, but am so sick of crying about it. While I understand I’ll die from this, I’m seeking some help from other who have managed to live with this disease to give me some hope. I’m trying to change my thinking but am struggling. Thank you for listening. 

lrb_03

Hi, @Watto . I'm so sorry to hear your news. There really are no words
Have you requested tp join the private living with metastatic breast cancer group on this site? Here's the link. You can also request the Hopes& Hurdles pack. 

https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

I wish there was more I could do or say
Sending hugs  💞

Watto

Thanks lrb_03. I tried the join button button does t seem to take me anywhere. Thanks for your kind response. 

Afraser

@Giovanna_BCNA, can you help
here tomorrow?
@Watto, so sorry to hear your new diagnosis, that’s an awful lot to carry. I am not in your position, but know there are a number of people with mets on the network doing well, over long periods, with the appropriate treatment. I am sure they too have felt hopeless but found a way through. Take care. 

Lisa1407

Hi @Watto, I feel your pain and note that although I am almost four years in from my diagnosis of de novo metastatic breast cancer (had bone mets in hip) I can say that the pain has lessened but it is not uncommon for me to have a cry in private on a regular basis. People think you are amazing, but really you have to be when you have children to look after. I too have youngish kids (14 and 16) and their father chooses not to have anything to do with them, so am worried about who will look after them should I die before they are adults. I use this to motivate myself in regard to my health. I also try to focus on the positives associated with having advanced cancer (although to some people this is quite morbid) - things like I don't have to save for my retirement, I am in a better position financially than I would have been because I have accessed by life insurance and TDP insurance (prior to diagnosis I was a senior excecutive in health unable to get a job), I am able to have a body that looks like I am 18 again thanks to medicare's support in relation to breast reconstruction, tummy tuck and subsequent fine tuning which is coming up (although no one except me sees my body)!
Know that you are not alone and there are many beautiful women on this discussion board who are only to happy to provide you with guidance. Like you, I appeared to have both hormone receptor positive/ Her -ve and triple negative tumours when diagnosed. The doctors still don't believe it and have assumed that I am hormone receptor positive/Her -ve because having two different kinds of breast cancer at the one time never happens!! I note though I have not responded well to hormone treatments, so does this mean I am hormone resistant or triple negative? I have been thinking about this recently, so will ask my oncologist next week, as it could mean different treatment options are available. I am BRCA negative though, whereas being BRCA positive may make them think that you are triple negative.
Although you prognosis is not good, you will have quite a few years ahead of you given the current treatments available. So make the most of it and spend as much time with your dear children as you can. Lisa xxx

Hankster

Hi I was diagnosed with bone Mets in my neck, back,rib and pelvis nearly six years ago.  I have had no progression in that whole time. You got is early so you will be monitored closely.  There are so many treatment options if it progresses.  I know of women who have lived with the disease for over 20 years and intend to be one of them.  You got this ❤️

SoldierCrab

hi we have ladies with stage 4 TNBC in this facebook group if you want specific supports 
https://www.facebook.com/groups/1166665270079659/

Laura_BCNA

Hi @Watto, sending you a private message.

Palmbeachprincess

@Watto
I have just posted. I had a recent PET scan that showed NED. Over the years I ve had breast, bone, liver, skin and pleural lining. 

I’m 42, 3 kids age 10,13 and 15. 

Please stay positive. It’s by no means the end. You can live many years well, and whilst you are busy living new treatments are being developed.
sending love and happy if you want to contact me direct xxx