Hi Meme
I’m so sorry you have had to join this gang because it means that you too have to experience having your world turned upside down by something that feels so simple. Great that you’ve found us, where you can get all kinds of support and advice, and that you have resisted Dr Google. The fact is, every breast cancer is unique. It would be simple for someone to say ‘Oh I had that and this is what happened’ but we each have a different genetic makeup and certainly different psychological makeup. Oncologists need to gather as much data about your tumour in order to tailor the treatment to you specifically.
What I can say is, as the sheer number of us here testifies, whatever your treatment plan, it will be manageable. It may sound very frightening as we never know how we are going to respond but oncology teams are experienced and ready for everything. They are the experts and you learn to trust them, especially if you get some continuity of care, like the same breast care nurse or the same oncologist.
Please forget concepts about being positive and brave - that immediately sets you up for failure when, inevitably, you feel crap. You do what you have to do, simple survival. If yu feel you’ve had a great day, revel in it but if you are tearful and tired the next day, there’s nothing wrong with that! Ask yourself (and your fiancé) how much information you need to get through. Are you someone who needs to see every report and analyse the details, do you really want to know your prognosis (which is only based on statistics), or are you someone who just wants to get through it with the minimum of knowledge? You’re entitled to copies of everything but I preferred to play ostrich. In fact, it was three years before it registered that one of my tumours was triple negative. I regard that not as an oversight but as three years where I had far less worry!
You are wise to take someone with you. You may have found that voice going in one ear and out the other while you mind is trying to process the simple fact that you have breast cancer. Your MRI is simple. You may have to remove your watch and jewellery and wear a gown. You then lie on a rather hard bed, get yourself comfortable and lie still. The bed will move into the scanner but there is a mirror that shows you the room, even a tv in some rooms, so you don’t feel alone. It is very noisy at times, makes the oddest bangs and clatters but it’s all normal. If you’re offered music, fair enough but you won’t hear a note of it for the banging. They may give you ear protectors.
You will have had a cannula put in your hand and at some time, a disembodied voice will tell you they are putting in the contrast dye. All you will feel is a coldness in your lower arm for a few seconds. Then off the scanner goes again, getting a contrast image. There are no side effects. Actually this is one thing you can safely Google, just to see what it’s all about. If you’re claustrophobic, just tell your oncologist or breast care nurse, even your GP, and they may prescribe something to make you feel calm. My oncologist would prescribe 2 lorazepam at a time and, although it’s a sedative, it just makes you feel normal, you can handle anything. I still take it for scans!
In the meantime, I strongly advise you to do what you can to strengthen your emotional wellbeing because it is going to take more knocks. Mindfulness, meditation, yoga, running - whatever helps you feel good. I rely on YouTube videos by Progressive Hypnosis, which focus on diaphragmatic breathing and visualisations and often send me to sleep. They provide a valuable respite for me. Calm and Headspace are two NHS-endorsed apps that offer a range of soothing opportunities. The trick is to do them regularly, before you really need them, so they are embedded in your lifestyle and ready to use when you feel afraid,
I can’t diagnose but, from experience, I’d say the pain you experience is from the biopsy. Pain and brain are an odd combination and sometimes wires get crossed. Three years after my mastectomy, I still experience what we call phantom nipple, a tingling in the chest exactly where it used to be! However, I would always report anything untoward. If you have been given a breast care nurse or a link to their service, I’d contact them and ask. They’ll note it in your record for the consultant to see.
I wish you all the best for what lies ahead. It may be simple, it may be complex. It’s still traumatising because the mere words ‘breast cancer’ send shockwaves everywhere! Considering how common it is and how many women live comfortable and full lives living with breast cancer, you’d think our attitudes would have changed by now. Recovery rates are good and treatments are continually evolving.
Take care (and sorry for the ramble)
Jan xx