Hi Kerstin
I suspect many people could identify with your final comments. I have found Stage 4 breast cancer quite an isolating experience as people can’t quite grasp the enormity of the world we now inhabit. They don’t want to think about ‘incurable’ because to them it means death. While you look your normal self, even if you are plagued by fatigue, they will tell themselves you’re ok. You may be juggling with all sorts of side effects from your treatment but I’ve found that, until you lose all your hair, no one is really convinced you are seriously ill.
That’s great because we don’t want to be treated with kid gloves but, personally, I find it hurtful that people refuse to engage with the matter. They have a choice and we don’t. My best friend has often said ‘none of us knows when we’re going to die.’ Were it not for the fact that her husband died of heart failure in his sleep, I’d have blacked her eye by now. I believe it’s important to look around your circle of friends and family and choose very carefully who you confide in initially. It has to be someone who will be able to step back a bit, put their own feelings aside and help you with yours. They can’t help with the cancer, but they can help with the emotions. After that, it should be easier to extend the conversation on your terms. You’re not looking for pity (which you often do get) or for people to try and fix you, just acknowledgement of what you are facing and practical and emotional support as needed.
I found with my primary bc in 2018-19, all my friends rallied round. I had acquaintances asking to be added to my list of drivers! This time (and Covid maybe has a lot to answer for here), no one has offered. I have to reach out to a small number of people who I believe can help. The number is smaller because people’s social bubbles were so restricted and many people are being very slow to extend the circle they grew used to - meaning I’ve fallen off their radar.
It’s great news that you’ve responded well to treatment. For me, having a mastectomy was a no-brainer. It had two tumours missed by a mammogram and an ultrasound and the cancer had spread to 19 of my 21 lymph nodes. I wanted it gone. The operation itself was no trouble, I experienced no pain afterwards (not even a paracetamol’s-worth), just a lot of discomfort because of a drain and then the relentless exercising. The absence of a breast meant nothing to me except I believed I’d saved my life. But I was in my 60s and I’m assuming you are much younger. I’m guessing you might not be offered a reconstruction in your circumstances (it’s unusual even to be offered surgery at Stage 4 so you must be doing well). Personally, I’d ask the oncologist what the benefits of a mastectomy would be - because it’s certainly no guarantee the cancer won’t come back (my secondary bc tumour is behind the top of my nose!). There must be some benefits for them to have suggested it.
Losing a breast can be a huge psychological blow. You need a very empathetic partner to keep reassuring you that you’re the same person as ever. It’s usually resolved with a reconstruction. Ask if that is possible. After lockdown, I’m happily monoboobed - a prosthesis can be a real pain! My greatest regret is that, as a clothes addict, never above a size 8-10, all that’s gone. Lopsided is a restricted look but fortress bars are not for me. I actually wish I’d gone for a double mastectomy for aesthetics, especially as my remaining boob has grown from 34A to 36DD with treatments. So, sorry I can’t help you with that doubt. Maybe if you asked the one question in a new post, you might get more responses.
You sound like you’re very grounded and, for now, are managing your condition well. Long may that continue. All the best.
Jan x