Losing Confidence

Hi i was diagnosed in May with grade 3 invasive duct & high grade DCIS. After many tests I was hoping to have a treatment plan when I saw a consultant last Friday, sadly that was cancelled at the last minute as I need more tests - ‘magview’? Another appointment made for 11th July.

Really stressing & have lost confidence in my care team, a month down the line I hoped I would have a treatment plan.

Hi Yorkie

I can fully appreciate your feelings about this delay. What I’ve learned from my current experience is that there are things we don’t even realise exist, various proteins, mutations etc, that can make a difference between what is and is not available. I, for example, am triple negative and it’s astounding how many treatments are not available to me because of this feature of my breast cancer.

Your team are aiming to get you the best tailored treatment to defeat your cancer. NICE advises a maximum of 90 days between surgery and commencing adjuvant treatments (chemo, radiotherapy etc) so you can see that, although we want it gone asap, they know that, once the right treatment starts, it will have a better result than a makeshift treatment now. Trust in your team is essential. The trick is perhaps knowing what questions to ask - you could ring your breast care nurse and ask why this new test is causing the delay and is there a risk in delaying it further. That might reassure you. The problem usually is that we don’t use clinic time well - we think of our questions later.

Waiting is awful. Be prepared for a LOT of waiting, waiting for each chemo or radiotherapy treatment, waiting for results, waiting in clinic… Resign yourself to the fact and work out how best to manage these times - meditation, mindfulness, crosswords, whatever… and understand that your team is doing it right. They aren’t dragging their heels - some of these tests take several days/weeks to get done and many are not done on site. But each tiny additional data will ensue you get the best treatment combination for your unique circumstances. There’s no one-size-fits-all in this. 

Do stay off Google and do work on building up your resilience. Treatments are all manageable (not great but doable) and mostly they do work. But the world of oncology is a mystery to most of us. Even Liz O’Riordan who now campaigns for breast cancer, she was a breast care specialist and was shocked when she was on the patient end of the experience! We need resilience and that can be built up by rigorous practice. There are NHS-endorsed apps like Calm and Headspace. Personally I rely on selected videos by Progressive Hypnosis which are free on YouTube. In fact, I’m off to do one now.

Two weeks feels an age but it can be filled usefully so you are better-equipped to deal with the tough experience to come. Best of luck.

Jan x