Triple Negative Breast Cancer

Hi, I have a 5-year old who just started school (in the middle of my chemo treatments). I think kids are very resilient and he seems to take it in his stride. He's never keen to visit me in hospital but we've been pretty honest with him about what's happening (while keeping him away from it all). 

I've found that the thing with having a young kid is it keeps you pretty distracted. I feel like I haven't had time to wallow around and feel sorry for myself and its made me get up off the couch, take him to the park, that sort of thing. I also think it has given me motivation to beat this thing - I want to be around to see him grow up - and I think this has given me a really positive attitude to recover and get through all the treatments.

There's a few decisions I made (such as doing the cold-capping) which I did for him. I decided it would make this seem more 'normal' if I could avoid hair loss and that sort of thing. 

Hope my experience helps. Anne

I am in Cairns, and apparently no genetic councillor here.  I spoke to the one in Townsville and was told they would contact me for a consult, over a year ago, they said it would take about 12 months so I must chase it up.

Thanks for the info.

Paula :)

Hi Paula:

We are regional and had the testing set up through the genetic  counselor at the hospital.  I was referred by my surgeon.  The genetic counselor took care of all the arrangements even though we ended up self funding.

Cheers!

Yvette

Well that's not as bad as I thought. Are you regional?  how did you go about organizing it?

Yes, on the count down to 5 years. Yay!!

Paula xxx

So heartbreaking :'(

How are you feeling today?

Hi Paula:

I don't mind you asking at all.  It was $900 for the testing and another $100ish for the transport of blood from QLD to the lab in Melbourne.  Fingers crossed all negative.  

Good for you for clearing TNBC twice!  Sounds like you are very close to that 5 year mark this time around. That is awesome.  

Cheers,

Yvette

Hi Ladies,

I too am triple neg.  I am waiting (quite a long time and I must chase it up) for a genetic counselling appointment.  It was never recommended to me by anyone but I also have a daughter, she is 16.  I have had two diagnosis both TNBC, one 6 1/2 years ago and a recurrence almost 5 yers ago... hanging out for the 5 year mark as our chances of survival actually are really good after that.  Yvette was the self funding expensive?  I hope you don't mind me asking.  I hope you both get negative results, me too ;)

I don't think I will qualify either but will see what they say.  Good luck to you both with your treatment.  My son was 8 when I was first diagnosed and my daughter 10.  They were both amazing, with both diagnosis.  We kept them informed and drip fed them info as it was needed.  All in a kid friendly way.

Hugs to you both.

Paula xxx

You are most welcome.  Sounds like you are doing all the right things with your girl.  It certainly takes the focus off of us..

Shortly after I was diagnosed I read a couple of peoples blogs that took them all the way through their treatment (really wanting an idea of what to expect).  One woman wrote a letter to her tumor the night before surgery.  She thanked her tumor for opening her eyes to some important things, said she would never forget what it had taught her and then said that it was time for it to go.  I found her approach a bit odd but as time has gone on, I totally get it.  There are lessons to learn and I hope to get each one of them.  Sounds like you are working on the same type of approach with your family.

I am quite the control freak as well.  That is probably why it was so important to me to have my plan.  I have been very lucky with my chemo, I've had minimal side effects and have been able to continue most of the things I enjoy (including daily workouts).  I'm good and sick of it now but that comes with the territory.

Again, good luck and do let us know how you go with your treatment plans!

Yvette

thank you for responding xxx

thank you inkpetal, no insensitivity taken, just my first day of reflection (time for tears and a few screams of frustration) and then my focus will shift as you have suggested to getting myself ready for treatment, and all that comes with that. I like your point on how far we have come and how far we will be in the future. My daughter was diagnosed with early puberty two weeks ago so has already developed breast tissue (she is 6) and started on hormone suppression to treatment two days before my biopsy. So my mummy stress levels were already shot and February was a trying month. But we are now in March and looking forward, not back, and I just need to remind myself of that.

xxx