Responding to others

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I also use a forum specific to breast cancer. A couple of days before Christmas I saw a post from someone who had just been diagnosed with triple negative breast cancer and would have an appointment with oncology in January to establish her treatment plan. She mentioned her tumour had vascular invasion. I replied with some information on my situation (essentially I had vascular invasion with what was thought to be an early stage tumour, and later found out I had a secondary in my liver, which was likely already there at the time of breast surgery), suggesting she press for a scan.  In opening up the thought of possible secondaries I have very clearly upset the OP to the point where she describes me as an arsehole. She was particularly upset to be faced with this thought at Christmas.

It serves as a useful reminder to me that things don’t always land the way you expect, whatever the intention. And that it’s far safer to discuss the reality of metastatic cancer with those in the same boat rather than with the newly diagnosed. I don’t usually comment on similar posts except where someone is looking for information on an experience I have had. However the medical profession’s lack of focus on vascular invasion is a bit of a red rag to a bull with me as I think my outcome might have been different had I had a full staging scan once that risk factor had been established. Lesson learned. 

  • I’m so sorry that anyone would think that you were being anything other than kind. I think maybe they should look at themselves. I do know what you mean though, about sharing our experiences with people who aren’t necessarily aware of the possibility of secondaries. When I think back to 2019, I would probably have been horrified at the thought that my cancer could spread. I hope you’re doing okay.

  • Thanks. It’s a tricky one isn’t it. I think we eventually get to the point where talking about the downsides and poor outcomes is normal, without remembering that at the beginning you mostly need hope and reassurance 

  • I’ve just read your response to my post! It looks like I’m stalking you.Rofl

  • You are more than welcome!

  • Hi  

    I'm sorry that this has happened to you on the other forum you use. I understand completely why you suggested pressing for a scan as I also think that my investigations were not thorough enough at the start. I have only come to this knowledge from the womb group here on the community as others have MRI and CT prior to surgery. Different regions, different protocols perhaps. There are 2 ways of looking at it though I suppose. If I had not had my primary surgery when I did and had to wait for scans, would I be here now? I no longer torture myself as it is what it is.

    Your intentions were good for that person and in my opinion, it was rude of her to say that. Don't be put off in bringing your personal experience to use in answering posts here on this community. In my view, our story is our story and is used to help others. 

    A x

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