Confused and now worried again!

I had a phone call today from my breast cancer nurse. Apparently im a grade 2 but it looks like my type of cancer might be inflammatory breast cancer. I saw my consultant last thursday and he said that my organs were clear. But the nurse has said that theres a ‘haze’ in and around my stomach?? Im due to have a pet scan which will hopefuly confirm what it is. Im terrified if it is cancer that’ll mean its secondary. Im just feeling really low about it all now again!

Hi Amy, it’s a very anxious time but remember it’s not cancer until confirmed as such.  There are all sorts of quirky things they have to rule out.  I had an abnormal scan which turned out to be nothing.  I’m not trying to trivialise your situation in any way as I know exactly how you feel but there will be a treatment plan tailored specially for you and if it’s less treatment after this is ruled out then great.  I was also had inflammatory symptoms and was stage 3 and I’m still here.  If there’s anything you can distract yourself with like walking, binge-reading nutrition, binge-watching on Netflix for a bit of escapism.  Sending hugs. Xx

Hi Amy

This is a horrid time when our imaginations have too much time to run haywire. If it helps, my CT scan indicated “an area of concern” in my central chest wall. This was after I’d learned that 19 of the 21 nodes removed in surgery were infected. Once I’d started chemo, I asked about this area of concern and was told not to worry about it. It was no longer relevant. I hadn’t had any further tests and I’d only had one treatment so… The fact is, oncologists have to be ultra-cautious but they also have to alert us to all our symptoms (or possible symptoms) as part of their duty of care. Unfortunately, we are human beings with a very negative view of anything associated with cancer and their language is often very frightening. Yet the success rate in treating breast cancer is increasingly high. We still focus on the bad stuff and we fear the worst.

You may be the sort of person who needs as much information as possible. Personally, I knew I had cancer, I knew it required treatment (“I want to throw everything we’ve got at this.” Scary eh??) and I switched off. What difference did the stage or type make? I could do nothing but trust my team. I had a lot more peace of mind once I adopted that view. Whatever you do, please avoid Google. It really is the worst possible resource right now as it doesn’t take into account your emotions and can’t adapt to your unique diagnosis. The result is more terror and there are loads of women who use this site who would support my advice. Dr Google is the enemy. If you have questions, your breast care nurse obviously knows your precise details but the nurses at the number above are great - highly recommended.

Emotional wellbeing is half the struggle during cancer treatment. While you’re waiting for for next scan, as Mai suggests, do what you can to build up your resilience. Meditation, running, yoga, mindfulness, chocolate…in my case, I plugged into YouTube videos to help me relax and sleep and I still use them (I like Progressive Hypnosis’s Manifest Healing as a form of guided relaxation). Plus chocolate till chemo made it tasteless. 

I wish you all the best for your scans but remember, it’s now diagnosed, your delay probably made no difference and you will now get the right treatment based on all these tests. You can’t change things so just trust your team to do their very best for you, as they will. You focus on looking after yourself!