I was diagnosed 5 weeks ago grade 3 ductile invasive carcinoma, Er/Pr Negative HER-2 positive. It is also in my lymph nodes, 9cm tumour, told by the breast consultant that after chemo, injections and a mastectomy, lymph node clearance and radiotherapy that there is no reason why I shouldn’t come out at the end perfectly healthy. Fast forward 5 weeks and I haven’t started treatment, I spoke to the oncologist on the phone who after talking through treatment told me the bone scan showed areas on my rib and breast bone that needed a PET scan to investigate. I had that today. I’m trying to remain positive but the news of that did dent my armour slightly. I’m in my own with 2 teenagers and they know my diagnosis but not that other areas are being checked out until I know the result. I would really like to be getting on with some treatment, can’t help but think the longer it’s left the more it can spread. I’ve looked at this forum a few times and finally thought I’d share my story.
Hi Shep
This is one of the worst periods when there’s so much uncertainty about diagnosis. I’m sorry you find yourself here. You recognise from the basics that this hasn’t been caught early but now you have to learn to trust your team. They would never put you at risk. Obviously with the PET scan, they are looking to see if there has been further spread but I’ve had bone and CT scans pick up all sorts and none of them have been metastasis and I actually do have metastatic BC. I’ve discovered I have a badly healed sternum from a car accident (A&E x-rayed it at the time and said all was fine!), a nodule in my lung from inflammation caused by a chest infection (the last chest infection I had was 40 years ago!) and I’ve 4 cysts on an ovary. Ok…… sounds like an alternative version of 12 Days of Christmas.
They need to get all the facts of your unique breast cancer before deciding what treatment is best for YOU. You have an advantage in that your tumour is HER-2 positive. This means you don’t have the faster-spreading breast cancer and that may be why they are waiting with confidence. Please don’t picture malignant tumours spitting out nasty cells that are multiplying in your body and charging past your lymph nodes as you wait. That’s not how most cancers work, fortunately, Even when I got my secondary diagnosis which is triple negative, the most aggressive, they took at least 5 weeks before starting my chemotherapy because they were testing for x, y and z (I find I manage it all best by knowing as little as possible and just getting on with it) to ensure I got the right treatment and it’s worked brilliantly so far.
But that is my breast cancer. Yours is different. It’s a primary breast cancer and hopefully will remain so. Recovery rates are good and continue to improve year by year. You sound very grounded, determined to just get started and get through it. That is a huge advantage. I’m not a fan of the battle analogy and the use of terms like warrior, positivity etc but there’s no denying the fact that, if you’re crippled with anxiety and fear because you’ve Googled and read stuff that’s terrifying in the wrong hands, it’s harder to face harsh treatments with confidence. It’s all manageable though.
But I would encourage you to whatever you can to look after your emotional health. Scanxiety is a waste of good energy. Find whatever satisfies you and fill your spare moments with it - running, baking, mindfulness, yoga, they all will help if you practise regularly and can rely on them to soothe you when you need it. For me, it was YouTube meditation videos (I recommend Progressive Hypnosis, which offers and good range guaranteed to send you off with the fairies, unless you get distracted by other things on there!). Decide too how much information you want to know (please don’t Google anything - ask questions and ask your children not to Google because most of the information is irrelevant to your condition but can cause real terror if taken at face value). Some patients opt for every tiny detail and copies of each report so they feel in control of their condition. Others, like me, get by with the ostrich approach. However, the nurses’ helpline here is a brilliant service and you can post questions in the Ask Our Nurses forum if you can’t get answers from your hospital or just need reassurance.
I hope you get your results soon and hope too that your team is just being cautious. They will then start your treatment. The timing sounds like you’ll end up like me - first chemo on a Christmas Eve lol. I wish you all the best,
Jan x