Grade 4 invasive lobular cancer triple negative

Hi. I don't normally post on any sites so this is a rarity for me. In 2017 I was diagnosed with primary invasive lobular cancer stage 2. I had chemo, surgery and radiotherapy which finished in March 18. I recall the surgeon confidently telling me we are aiming for 'cure'. In March 19 I had a pain in my ribs my GP ordered an. Xray which id not show anything abnormal. In May 19 I presented to the emergency department with chest pain and following numerous tests and scans was diagnosed with stage 4 ILC with extensive spine mets and liver mets.

Having got over the initial shock and poor prognosis I started tthinking about signs I may have ignored. What comes to mind is that prior to my initial diagnosis in 2017 I had an extensive period when I constantly could smell smoke (phantosmia). It went away about a month before I was diagnosed. Strangely I had the same experience of phantosmia early in 2019 before this recent diagnosis. I know it sounds bizarre but I think I could smell the cancer growing inside me. If anyone has had similar experiences please let me know. It would be fascinating to do some research if there is a causal link.

I know there must be many people in a similar situation and in the time I have left I just want to help do anything so others don't have to go through the pain me and my family is. 

Thank you

  • Hello KayC, 

    I am so sorry to hear about your diagnosis it must have been a real shock to you. Thank you also for sharing your experience of phantosmia. I certainly hadn't heard of this before so it would be fascinating to hear from others who have also had this strange feeling that they could smell smoke. I hope we will hear from some of our members and that they will share their similar experiences with you. 

    We're all here for you anytime you need to talk. 

    Best wishes, 

    Lucie, Cancer Chat Moderator 

  • Hi Lucie

    Thank you for your message. Reading through other people's posts has helped me and I don't feel so alone.

    I am just taking one day at a time and enjoying the small pleasures. 

    I think staying positive really helps.