Update and seeking advice.

Hi Bsnow

I suggest that you put this question into the breast cancer group as it's a busier group than this one.

Best of luck with chemo.

Best wishes

Daisy53

Hi Bsnow

Sorry to hear about your diagnosis, I’m a little further along the journey as I was diagnosed in June but I totally understand your fear and concern. The normal treatment pathway and the one I’m on involves chemotherapy first, then mastectomy then radiotherapy. I had my surgery at the end of December and I’m now awaiting radiotherapy. I understand how shocked and upset you will be and I certainly have dark days. My experience of chemotherapy was brutal, it made me very poorly and I was admitted several times. I seemed to have every side effect listed and a few more of my own and I’m still having side effects now even though it finished months ago. That’s the bad news but the good news is that the chemo attacked the cancer and I could tell it was working within 2 days of my first infusion - it was amazing! I didn’t have any breast pain with my cancer so I can’t really advise you on medication, do you have a specialist nurse you can contact for advice? I wish you all the best with your treatment. 

Hiya, I’m sorry to hear about your diagnosis. It’s a very difficult situation to find oneself in. It’s good to hear your consultant is aware of the importance of testing for inflammatory breast cancer (IBC). I have found co-codemol quite helpful for pain relief (although it cannot be taken long term due to risk of dependence). Can I also recommend the inflammatory breast cancer network UK if you haven’t found them already? They have a FB group full of useful information and support. Wishing you all the best x

Hi Silene thanks for your reply. 

As my punch skin test came back negative and the cancer has metesised to my lungs my oncologist has advised that we just get on with treatment as for secondary TNBC. Doing more tests will just delay things. Im not sure if this is in my best interest, but I trust they know what they're doing. Im hoping that a recent test for PD-L1 will enable me to go on a promising research program. If this comes back negative I intend to ask to be referred for more investigations relating to IBC. Hopefully they'll do another skin punch & make sure and definitely rule out IBC.I need all the help and options I can get.

Thanks for the advice about co-codemal. I've given them a go and they do help take the edge off of the pain. 

Well wishes back to you x️

Join the inflammatory breast cancer support network on Facebook for lots of information which may help

Hi CarolineD22, I have tried, but without a definite diagnosis I could not join .