Invasive lobular gr 2.. best treatments?.

@lemonade To chemo or not to chemo. It's a dilemma.

There should have been a multi-disciplinary team meeting to discuss your case at some point. That's probably the document you need to chase down. There would have been a med onc and a rad onc involved. It would be helpful to see what they had to say about you.

Most commonly they use the Predict tool to assess your chances of responding to a variety of treatments--surgery, chemotherapy, radiotherapy and some form of hormone therapy. The stats that come out of that are often not helpful. 5-7% increases in survival rate after putting yourself in the blender and having chemo are common. Not terribly motivating.

Getting conflicting messages makes it worse. I don't know about you, but I prefer to see the science. It doesn't change the situation, but it gives you a better idea about what you might do about it. It would probably also be helpful if surgeons confined themselves to commenting on their field of expertise. Mine was completely off the mark and it has pissed me off no end that he didn't just do what he is trained to do and leave the rest alone.

I had invasive lobular in 2006. A whopping tumour (55mm) but nothing in the sentinel node. I was 43. I ended up having AC chemo then double MX with implant recon. No radio therapy as I couldn't afford it (that's a whole other story about living in the sticks)

I marched through AC with very few problems--worked right through-- and then was on tamoxifen for 5 years, once again no issues. So, the treatment is not always as bad as you think it will be.

The problem is lobular BC is a sneaky bastard. I remember one GP saying, 'Oh, you don't want that one." As if I wanted any of it... Mine did come back in 2016, in my armpit of all places FFS, so I've had to make all the decisions again. Phhft.

Something that is often not considered is the pressure from people around you to 'do everything you can.' For me, that pressure was the tipping point to have more chemo, TC this time. I regret it in one way as it  has been one chemo too many for my poor body. But, and it is the big but, I won't be hearing anything like 'It's a pity you didn't' later if and when it reappears somewhere else.

Rads isn't that bad. Very time consuming and it makes you tired and sore, but, once again, it ticks all the boxes so there are no regrets later.

Get to the bottom of it and talk to a medical oncologist. Their training pushes them towards poisoning you, but it's interesting to hear why they do, or do not, recommend chemo.  Good luck. Marg xx