I was diagnosed with triple negative BC in June 2019. The lump was around the size of a strawberry and there was some spread into 2 lymph nodes. I had a full round of chemo but then had to do another round with a different kind as the lump barely shrunk from the first round. In early 2020 I had a mastectomy, removal of some lymph nodes. And I had the reconstruction using fat from my stomach. I was in surgery for 9 hours. I had some complications and needed a blood transfusion. I also had to be readmitted and go back into surgery on my stomach as there were problems with that. In April 2020 I had radiotherapy and finished my treatment. So far the cancer has stayed away. And of course I’m happy about that but to be brutally honest, I feel worse now than Ive ever felt. Physically I’m not good. I have so much pain from around the reconstructed breast. I am always exhausted. I have pain in my bones and joints which stop me from doing anything too strenuous. My mental health is a mess. I have terrible anxiety, and periods of depression. And every scratch, bump or pimple I convince myself that it’s cancer. But I feel like I am being a hypochondriac and should be doing well like others I read about. There’s all this talk of BC warriors and I just don’t feel it. I’m sorry that this post is miserable, I’m not trying to bring anyone’s mood down. I just needed to vent
Hi Caroline
There is so much in your post to address but really you need one giant hug. A breast cancer diagnosis is always hard to process and a triple negative one often means that the mental leap almost all of us initially make from lump to death lasts even longer. Add the treatment and the fear seems endless. It’s hardly surprising that recent research suggests that over half of people who experience a breast cancer diagnosis and treatment go on to develop Post Traumatic Stress Disorder. Hospitals are great at dealing with the clinical stuff but crap at dealing with the long-term emotional baggage.
I’m also triple negative btw. So where does this leave you? You were right to reach out here. We can’t diagnose but we can empathise. Many women just can’t let go (like you) and imagine the breast cancer still running rampant and lying behind every ache and pain. To a small extent, that’s a valid fear - there is always the possibility of a recurrence and we need to stay alert for any physical change (visible or invisible) that doesn’t respond to conventional treatment within a reasonable amount of time. That doesn’t mean there is a recurrence but that you need checking out just in case. Apart from that though, you’re healthy and should be able to get on with life.
So why can’t you? You certainly sound depressed and anxious, two overwhelming states that can be hard to break out of without professional support so I’d say take yourself back to a sympathetic GP. If you can’t say what’s wrong, read out what you’ve written here. it says it all. Hopefully you will get referred for mental health support. You might be offered an SSRI. They work for some, they don’t for others (and they bring their own side effects). But it also sounds as if treatment has left you with neuropathic pain and there are medications that can help with that. The best seems to be amitriptyline, then gabapentin, then pregabalin (which is brilliant for anxiety). How do I know? Been there. No matter how carefully you do your exercises, neuropathic pain won’t go away without treatment (in fact, it doesn’t even go then!)
I truly dislike this image we have of cancer that it’s something to be beaten in battle, that we are all pink-clad warriors running marathons and baking, baking, baking to raise money in gratitude for our recovery, that we just need to ‘think positive’ and it’s all sorted. Well, I don’t think there’s a jot of evidence to suggest that wearing a pink tutu ever affected the outcome of cancer treatment or that positive thinking ever changes the course of a cancer. It may help individuals psychologically if they are that way inclined but, for most of us, we just feel sh*t, get flattened by fatigue and whatever side effects are thrown at us and get through. We manage our condition in whatever way suits us individually so please don’t compare yourself to a cancer warrior, in fact don’t compare yourself to anyone else, because we are each unique.
So where next? Obviously try to get to see a GP. That almost sounds a joke in the current climate but persist, even if you are 17th in the phone queue and the first appointment is October ( something I experienced the other day). I would also suggest you pick up the phone and ring the number at the top right of this page - the nurses’ helpline. I can’t tell you how wonderful that service is. Someone will listen to you and help put things into perspective maybe. Do you have access to a Maggie’s Centre or any other (breast) cancer charity centre? They can provide support and sometimes just sitting in Maggie’s can be really soothing. If you benefit from shared experience, eventually consider joining the Triple Negative BC (UK and Ireland) Facebook group. Many women currently going through diagnosis and treatment would benefit from your experience. You might also consider contacting your breast care nurses team about the pain and discomfort in your reconstructed breast. They are there for you for life, not just during treatment.
Meantime, be very kind to yourself. You don’t need a pink tutu, just a bit more self-awareness. What do you enjoy doing? Can that be arranged in small steps? How can you treat yourself (I resorted to a monthly subscription for flowers - wonderfully lifting)? Can you pamper yourself? If you’re working, how can Occupational Health help you cope better - that’s their job!
I do hope something helps to gently push you in another direction now. All the things you mentioned sound interconnected and some unravelling is needed now. All the best
Jan x