Hi, I’d like to connect with anyone who is experiencing the consequences of missed / delayed diagnosis. I was not recalled after my 2018 mammogram when I should have been. When I next went in 2021 I two tumours and extensive dcis which meant I had to have a mastectomy. The cancer had spread to my lymph nodes by this point. I had radiotherapy and drug treatment but in 2023 I was diagnosed with secondary breast cancer with lymph and liver mets. My prognosis is now 3-4 years assuming treatment continues to work as expected / if I keep going with it. In 2018 I had only 6mm dcis which if I’d been seen then would have needed just a lumpectomy and hormone treatment and I’d have had a significantly better prognosis. Finding this out for the first time now, by chance, is driving me crazy. I feel as though nothing is real. I don’t trust anyone now. Everything has changed but nothing has changed. It’s a mistake that can’t be fixed. The apology I’ve had means nothing to me. Im ready to give up. I don’t feel as though I ever had a chance…
I’m guessing this is rare as I can’t find any mention of a similar experience in the forums (which is good), but I’d really like to connect with someone who really gets what this is like, not just with people who empathise.
Oh Gemmma, I read your story and I am at a loss for words as I can only imagine how difficult this is for you. I know it is hard not to focus on what could have been but it can’t be.
There is a lot of research on metastatic breast cancer and women are living longer and longer. Doctors can give an opinion on how long you have to live but they are wrong so many times and people have defied the odds. I have a dear friend whose daughter has Mets from breast cancer snd she is in treatment and doing well. There are many women who are on this site that will be able to tell you about their experiences.
I am sending healing and positive thoughts to you and will keep you in my prayers.
Barbara
Hello, I’m so sorry to read this. I’d like to echo the comments from Hopeful Barb. I have a good friend who was diagnosed four months after me. She was treated for primary breast cancer, but she later found out that she was actually stage four, and not stage two when she was first diagnosed. It had already metastasised to her lung before diagnosis, and whilst she was being treated for primary cancer. She is on recently approved immunotherapy, hormone therapy and she was previously on chemo. The good news is that she has responded to the new treatment, and is now ‘no evidence of active disease’, but she of course remains stage four, and has 3 monthly scans. So it is under control at the mo. This doesn’t take away the emotional side of it though, and the shock that she also experienced. However, unlike you, she wasnt in the situation of a missed recall, and I can’t imagine how that feels. I hope someone who truly understands replies soon x.
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