have a date of 20 jan for mastectomy but CT scan on 3rd for chest and stomach, already had ultrasound that shows shadow on liver. Due for date for MRI on liver too. Have chest and back pain, out of breath, total fatigue, loss of appetite, cough…keep doing covid tests but its not that. I am beginning to realise what many of you already know…that initial diagnosis and treatment plan can change weekly. Its a mental and emotional battle to settle with every piece of news but I see that coming to terms with mastectomy might have been unnecessary effort as it could all be different next week. I tick all the boxes for secondaries so the CT results will be potentially more difficult to face than initial ultrasound and biopsy. Its an ever changing challenge that I wasn’t ready for, I coped well to start with, knew it was breast cancer before the official diagnosis but the prospect of more scans, more bad news, the prospect of cancelling mastectomy for a different treatment route is all a bit overwhelming. I suppose I should be glad that it is all moving fast. How have others coped with these changes in diagnosis and treatment?
Hello JoJamJan, I’m so sorry to hear that you are going through this.
There is always a positive to find in every difficult situation. The fact that you are being fast tracked is in your favor, they are not leaving any stoned unturned. The mind goes into overdrive which is natural, and the unknowing is hard to live with; as you rightly say plans go out of the window and throws everything in the air.
Hang in there, you appear to have a good team dealing with this, things have come a very long way in the treatment of cancer over recent years. Hold on to those thoughts.
You’re right. The waiting, the changes in diagnosis, the anticipation of more bad news are something many of us share - at the very time when you are still reeling from being told you have cancer. It’s a time when you have to draw on inner resources you didn’t think you had and reach out for support in a way you maybe haven’t needed to before. That is how we get by - by sharing our experiences and picking up on the odd comment or suggestion here and there. I would start by suggesting you ring the nurses at the number above. I know there is nothing specific they can do but they are very well-informed and so reassuring/comforting. It may help as you start to navigate cancerworld. (I hate the word journey almost as much as I hate the word positive!)
You sound resigned to the fact that your breast cancer has already spread. This may not be the case. I have secondary triple negative breast cancer now, with a tumour in my eyelid/bridge of nose (medial canthus) and skin mets. As part of my treatment (which is going well btw) I have a CT scan every three months, most recently yesterday. Every single time, the scan shows up a new ‘suspicious area’, a shadow here, a nodule there. None of these in 8 months has turned out to be metastatic breast cancer, though my oncologist keeps an eye on them. As I left my last consultation with him, he dropped in the fact that I have 4 cysts on my left ovary. Great. Obviously not cancer but what do I do about it? Gynaecology isn’t interested! The fact is, these scans alert us to stuff we’d have no idea was going on in our body and probably don’t need to know - ever. I guess what I’m trying to say is try not to jump to the worst conclusion when there may be other explanations.
While you are waiting for a final diagnosis and a treatment plan (which takes so long because they have to get everything right), you could spend time focusing on your emotional wellbeing. Good mental health is an essential part of recovery. Some people focus on what they enjoy doing, like running, swimming, baking. I relied on videos on YouTube (Progressive Hypnosis, brilliant) which offer meditations that can divert you for a couple of hours but also, if done daily, embed in you a sense that you will manage what has to be managed, that control isn’t essential and that it’s ok to hand yourself over to a medical team (who actually do know what they are doing - we very rarely get posts on here about medical errors and misjudgments).
I hope you get a final diagnosis quickly and your CT scan (which is always conducted at the start) shows that you cancer hasn’t spread. Meantime, practice that meditation, mindfulness, whatever, because you are gong to need every resource you have, and more. It’s a difficult but very manageable process we all get through. Take care,