Bitter taste 3 years following breast cancer diagnosis at 32. Worried its recurrence. :(

Hey there,

Happy Christmas Eve.

I’m hoping for a bit of advice. So I had a breast cancer diagnosis in June 2020 at 32. Had chemo, mastectomy and 18 months of kadcyla. No lymph node involvement. HER2+ only and noT hormone receptive so im not on any other medication apart from Velaflaxine for anxiety. 

Since the end of September I have had this horrible bitter taste in my mouth that comes and goes but is mostly there. I did have a weird sinus problem just before it so I put the taste down to that but it’s not going. I did speak to my breast care nurse who said they wouldn’t associate this with any symptoms of potential recurrence but I’ve ended up in the Google rabbit hole and can see some threads about bitter taste being linked to liver issues and cancer and so I’m in a spin.

I’ve wondered if it’s side effects from the Velaflaxine but I have been on it a while, maybe a new brand? Or maybe just the lasting impact of sinus? Long covid? Hormones post chemo?  I don’t know. 

I guess my question is can it be something linked to a recurrence? Or is it unlikely?

thanks and merry Christmas 

georgie x

  • Hi, I used to work in a dental setting and what you're describing is altered taste. Now, there are many things that can cause this, from acid reflux (when awake or sleeping) to a GI issue elsewhere. Everything in-between like a small infection in the oral cavity, dry mouth, medication (no idea about the one you're on), a viral infection etc etc can also cause a bitter taste.

    Something we learned very quickly during our journey, you can type in any symptom, like any symptom, and someone somewhere will have had that same symptom simply due to the sheer number of people out there. For example, itchy, dry scalp and boom, someone will have had that too. Something people do is once they have a specific illness, and it doesn't really matter which one, they tend to lump all symptoms together, and it's understandable because we're all on edge in case our biggest fear is realised. But the reality is, the body is complex and it's more plausible for it to be a separate problem from the main problem. After all, before all this if we had a backache and a rash on our hand, we'd assume they were two completely separate things.

    If you're worried, speak to a gp on Tuesday and see what they say. It's not a minor thing because it's worrying you, so no one will think you're wasting anyone's time.

  • Dear Georgie

    Thank you for getting in touch with us.  I agree with your breast care nurse.  It would be extremely unusual for this to be a symptom of a recurrence of breast cancer.  Even with liver problems I think you would get other symptoms before this.  I am afraid as a cancer nurse I have no idea whether the venlaflexine might be causing it but it doesn't seem to be listed as a common side effect.

    There must be some reason for it though, so I would suggest that you speak to your GP about it.  You may have a sinus infection that needs treatment.

  • Thank you so much for replying! Have you heard of it being linked to liver mets? Or is that even unusual? Xx

  • Hi Georgie,

    If you read the leaflet that comes with your Venlafaxine, you will see that altered taste sensation is mentioned under the possible side-effects. It is stated that this is one of the common side-effects, affecting up to 1 in 10 people.

    Kind regards,

    Jolamine xx

  • Hello and thank you for getting back to us.

    The taste change you mention is not a usual symptom of a problem with the liver and that includes cancer being there.

    Please do talk again with your breast cancer team if you are still worried and ask what can be done to make your mouth feel better.

    Take care,

    Caroline