In middle of staging scans

Hi Everyone, I’m new here. I was diagnosed with at least locally advanced breast cancer last month, bone scan is clear but have my CT scan on Saturday. I have my first oncology meeting on Tuesday so j hope I’ll be starting my chemo soon. I have increasing pain in my arm from cancerous lymph nodes and I think trapped lymph. Has anyone else had their arm scanned to see if the lymph nearer the elbow are affected and also any tips about questions I should ask on Tuesday please? I work in a school so am unsure about how sensible I need to be re infection etc. thanks in advance Xx 

  • Hi Rachie I haven’t started treatment yet but wishing you loads of luck with your treatment plan x

  • Hi 

    I can't help you regarding your arm scan but I do work in a school. I was told I wouldn't be able to work due to the high risk of infection from the children (I work in an Infant school). I was issued with sick/fit notes by my GP.

    Take care


  • Hi Claire,

    Thank you so much for your post, I’d hoped that I might make it in for a few weeks in between treatments but those around me thought I was maybe wishful thinking. I’ll have a chat with SLT before half term to say I could possibly get the same news on Tuesday. Thank you as I find it easier talking with them face to face and they’ve been really kind to me. 
    Take care Xx

  • I had a strange pulling/tight sensation on the inside of my arm before my surgery that I now know was pulling on the lymphatic tissue from what was happening in my lymph nodes in my arm pit. I got some cording after surgery and now after radiotherapy too, and the sensation was the same as I got scarring of the lymphatic tissue from both. I think it was all from the nodes in my arm pit causing pulling further down my arm - at leas that is what the oncologist told me. I was not offered further scans beyond my staging CT, which was normal. I had nodes involved too and it all seemed very overwhelming/ anxiety provoking at the start. It felt so much better once I had a plan for treatment and could get in to a rhythm with it all.

    I would ask about why your arm pit is sore - it might just be inflammation from the nodes pressing on one/some of the many nerves in your armpit, or disturbed lymphatic flow in your arm caused by the cancer in the nodes. I had that ache from swelling in my arm pit after nodes were removed at surgery too, but it settled down over a few weeks. You may well find it settles down once you have chemo or surgery. I would ask if treatment will settle down that sensation. Is there swelling around the nodes on the CT scan/ other scan you had that could explain the ache in your arm? If it is painful, is there any medication that might make it more comfortable in the meantime? Can you see lymphatic tissue on a scan further down the arm (I don't think you can, but you can ask so that you know). 

    Write your questions down beforehand and in the appointment, write the answers down so that you can remember what was said. I took someone with me as a second pair of ears to remember what was said too. As I was feeling anxious I don't think I would have remembered it all without my support person. If you ask and explain why, they are usually accommodating and you wont have to go alone.

    wishing you all the best for your oncology appointment xxxx

  • Hi zephyr,

    Thank you for taking the time to reply, I will follow your recommendations as it’s such a strange feeling and it’s changed over the course of me first going to the GP to now so I would like to understand what’s going on. It’s so weird isn’t it that you don’t know much about lymph other than to say your glands are up when you’ve got a sore throat to now I’m learning about how it works in my arm and armpit! I will definitely write down my questions, I always told my dad that but now it’s me I don’t think I’m as good at it! My node is my biggest cancer and so it would make sense that it’s pulling down into my arm and possibly that that’s changed over time as it’s got s bit bigger/worse. I’m hoping it all starts to settled after surgery as I’m quite an active person and hadn’t realised quite how much you lift your arm or stretch it out in a day!! 
    Thanks again for your long response and best wishes to you, I hope your treatment plan is going well Xx

  • I agree that we take arm movement for granted. I have had to work on keeping a full range of movement in mine with exercises and stretching out the cording. I also find my chest wall is tight - both after surgery and radiotherapy so am working on that too. So far so good - if I keep stretching I think it will be OK and am sure you will find the same. At times it feels as though it might not get better but with more time than I thought it did with surgery and I am imagining it will be the same for radiotherapy too.

    I hope your oncology appointment goes well and take someone with you if you need to. xxx

  • Thank you! I’ve got my CT in an hour or so so I’m hoping I may have the results given to me for the oncology meeting on Tuesday. I’ve played 90 minutes pf football today (although no throw ins) as I’m feeling like I’m almost at chemo stage now so want to do the things I love and not worry about speeding up the cancers spread (which was my husbands first fear when he found out as I love to be active!) My arm was really sore this morning anyway so I figured I won’t make it worse! 
    have a lovely weekend Xx