Soon starting treatment

Yes it’s frustrating. It wasn’t available at all for early stage TNBC when I was first diagnosed. I also wouldn’t have qualified, with a 1.8cm tumour and no lymph node involvement. Yet within 6 months I was stage 4 through vascular spread. It’s not wrong to want a game changer. I don’t know how much I am an outrider with my story but it certainly made my consultant wonder whether they should baseline scan cases like mine. 

Yes I mentioned your story to my consultant actually (hope thats ok?) . It was when I was asking about baseline scans and immunotherapy. The only scans I have had are ultra sound at the triple assessment and MRI after diagnosis. Apparently there is no evidence to suggest further scans warranted. I cant decide how much to push that further.

Hi Jan,  so glad it was helpful as I know that it is a very stressful time when decisions are being made.  I always like to know “why” too and when you have the data it makes sense.  Good to follow the science.  
Take care during chemo and I am pulling for you to get through treatment and feel good.  
Thanks for asking how I am doing.  Feeling good and so thankful. Back to exercising etc.   Has been almost a year since I finished radiation and now on Anastrazole an aromatase inhibitor for 5 years as tumors were estrogen and progesterone positive.  
Barbara

Thank you cuffcake. I'm at work now, busy after the weekend, but I'll definitely have a look at your journey xx

I have a little note pad, it might take some deciphering, nothing is in any kind of order yet. lol

I have quite a physical job, and it cant be dont at home, so we'll justhave to see how it goes I suppose xx

Thank you everyone for taking the time to reply, and post information xx

I didn't want to come across as ungrateful in my OP, I had no idea about the immunotherapy, and I thought yes, I'm going to take everything they're willing to throw at me, but when she ran through it all, the potential long term and life changing side effects scared the living daylights out of me. She told me to go home and think about it, and if I decided it wasn't for me, she'll tear up the consent form.

They still do, after reading through the links posted. I should have it, I know I should.

Would the potential effects be treatable, controllable, or would they go when the treatment stops. 

If the genetic test showed that risk reduction surgery was an option, would the pembro have been needless?

More questions to put into my note pad.

Hi there,

Hoping the sun is out where you are!

You didn’t come across as ungrateful at all - you just had a lot of information to digest and work your way through. Some people have been hanging in there hoping for Pembro approval because of the outcomes benefits. It’s only been suggested for you because it will do best by you in terms of the bigger picture - but it’s totally understandable to be anxious about side effects. I would feel the same. I did feel the same about EC chemotherapy but in reality I got very few side effects. They just have to run through all of them so they have done your job in letting you know the possibilities - but possibility doesn't necessarily mean probability.

The waiting for everything is draining. It adds to the worry, but you will feel so much better once the treatment starts as it will feel a relief to get started.

Do use your breast care nurse team for support - they will be able to answer lots of your questions and they know well how overwhelmed people feel, especially in these early stages.

My understanding is that the pembro will support the cancer not returning elsewhere also so I don’t think it will have been needless - but thats another question for your medical team.

I hope you are finding some nice things to do that take you away from being immersed in this current space - also really important for body and mind x x