I was diagnosed with lung and liver Mets last week after going to my doctor at the end of October with a swollen collarbone lymph node.
I was diagnosed with TNBC in March 2019 , went through chemo and had 2 ops, then Christmas 2019 it came back again. My treatment finished with radio and a mastectomy in 2020. I had a clear mammogram in Narch this year, and now here I am again. I’m not really sure what to do with myself. The breast clinic thought I had lung cancer, and after a PET and endoscopy, the lung team have passed me back to the breast team and I’m waiting for my first appointment.
How do you all cope? I think I’m in a really dark place. I cant find anh joy
I can’t find any joy in Christmas and I normally love it. Everyone’s coming to us and I literally want to run away!! I’m so scared that this is it now. I’m 57 and have a lovely family who are scared too. My husband is lovely and just keeps telling me to wait and see what I’m told but I’m tired already although generally fit and well; I can feel this thing destroying me.
Sorry folks, I dont want to make anyone else feel rubbish.
We have some similarities. My primary diagnosis and treatment were 2018-2019 and one of my tumours was triple negative. As I didn’t want to know details (playing ostrich - just get on with it), no one told me and I’m glad that was so. But I had heavy node involvement so I always knew I was at high risk of recurrence. I was diagnosed with secondary breast cancer (in my eye socket of all places) in March this year and it is the TN. This time I had to face reality but somehow I’ve managed to stay phlegmatic (I am a very anxious person) because there’s nothing I can do to change things. What will be, will be.
Treatments have improved a LOT, even for TN. I’m on my first line of treatment and the results have been remarkable. The tumour is still active but the chemo is containing it and my blood markers show no cancer activity. I just need the skin mets and the tumour to shrink away and hope the nodule in my lung doesn’t develop. But, if this treatment doesn’t work, there are many others. Please don’t think of this as the end of everything - it’s not nice and it’s not what we envisaged for ourselves but it can be managed, working closely with oncology (I have a face to face appointment every 3 weeks and a CT scan every 3 months). I’ve come across someone who has had stage 4 secondary BC for 22 years!! (I don’t think she has the complication of TN though).
It doesn’t matter where your TN has settled. It’s still breast cancer so that’s why you’ve been referred back. Oncology will take over and treat your breast cancer, wherever it is. As I said, my tumour is in the medial canthus (where you pinch your nose if you have a headache). Ophthalmology did the biopsy but couldn’t remove the tumour so it’s up to the breast oncologists to deal with it now.
While you’re waiting, I suggest you explore YouTube. There’s a huge range of relaxation and anxiety videos and Progressive Hypnosis’s Manifest Healing got me through first time. This time, it’s Cure Anxiety. After I’ve downed my morning pills (I’m on oral chemo), I put in the earphones and I’m away with the fairies. They are great for getting to sleep too. This is a great source of support and, if you’re feeling upset, I strongly recommend you talk to the nurses on the helpline number. You can also apply to join the secondary BC community, which is a separate closed group for us. I wouldn’t recommend the regular Zoom sessions till you’re more at ease with your diagnosis as members are at all stages of their illness, but I recommend that service too. There’s also Someone Like Me. I went to my first group session at Maggie’s a couple of weeks ago (once I was triple-vaxed and flu jabbed) and it was so comforting being in the company of people who knew exactly how different Stage 4 is!
I wish you all the best. If you need someone to talk to/at, just PM me.