Hi all, Is there anyone that has been in remission was first diagnosed 1995 with Grade 3 plus poorly differentiated estrogen receptive breast cancer and small node in liver. I was 38 at the time Mum of 3 married and not working as I had had major surgery on my lower spine 6 weeks earlier. I had my Overies out following year as part of my treatment so then went into menopause too. After Mastectomy Chemo radiotherapy , later 2 and Mastectomy then reconconstruction couple years after. After 5 years from diagnosis I went into remission .
Then in 2007 following a ct scan for pain in my liver area and being so breathless, I was told I now had 6 months to live but 18 months if I had more chemotherapy. I was devastated and suffered awful depression. But I decided to take everything offered , I was very ill I had sepsis twice and was spending most of my time either in bed sick or in hospital sick. The Chemotherapy was changed a few times as I was so ill with it and finally it was stopped before my last few doses as my body couldn't take any more . .my scan still showed some cancer but some had gone or shrunk a few had grown.
But.. I went on thinking I am dying slowly and I was getting so anxious about it all , I knew I had to change the was I was and one day I felt the change in my head and decided I was not going to die and I thought about it all the time ... Iuse to think the cancer in my body as black dirty bugs crawling around killing bits of my insides slowly, I had seen my daughter with a packet of coloured smarties and I just thought I'm going to make my cancer look like rainbow chocolate sweets instead. I even drew them so I could visualise them better ...life went on months, years went by , my lungs now had a disease called bronchiectasis in them which makes me very breathless and I get reg infections.
2025 January was my, last check up with Oncology, they no longer wanted to see me I was in complete remission no cancer to be seen any where . I know it's potentially asleep, as I was told It never really goes .so 31 years now form diagnosis and 19 years from terminal diagnoses .
I've just had an Xray after waiting 4 weeks following another chest infection it came back Normal, I asked my GP to see if I could have a ct scan as I have chest pain and the breathlessness is much worse, the stairs is to much I have to take it so slow or I feel sparkly in my head my heart pounds too. Now my GP said everything looks fine , but I'm not convinced ...Int want to waste NHS money if all is well but am I right in thinking he should at least take me seriously and get me back to be checked out , after all I still have metastatic breast cancer... or do I , I don't know
Sorry for long post but I feel very miserable about not feeling reasured
I also have metastatic breast cancer with no evidence of disease. I have only been like this for 3 years so am still well and truly in the regular oncology scans phase. Every time I feel something new, I worry it’s the cancer. I have a number of permanent side effects from treatment too. I think the only thing you can go on is the longer you have been ok the less likely it will eventually come back. I hope so anyway!
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I have metastatic Triple Negative Breast Cancer, in remission
