Confused.

Mic80Mic80 Member Posts: 38
edited May 9 in Newly diagnosed
Evening all...
so I have been through all the shitty tests/scans and waiting. I have had my right mastectomy with apparently clear margins.
6/14 nodes involved. After my mastectomy pathology a plan for 6 months of chemo was planned then more surgery, and oncologist specifically said no radiation was necessary. Today I received a call ( not from my oncologist) asking me to come in to organize my radiation for after my chemo has finished. When I explained that this was all news to me and this had not been communicated she was unsure as to what was going on.... this has really left me nervous and quiet upset. Obviously if it is required I will do it but makes me worry that perhaps the pathology was more serious than first thought.... I hope this makes sense and thanks for listening to my venting xx

Comments

  • GlemmisGlemmis Member Posts: 298
    Hello @Mic80, sorry you are feeling so upset, there seems to have been miscommunication somewhere between your specialists. It doesn’t mean your pathology is more serious. I had a mastectomy in 2016 with 3 positive nodes & my treatment was the same with six months of chemo & 25 rounds of radiation so it is quite standard.  Do you have a breast care nurse you can speak to? Or call your oncologist tomorrow for an appointment or even a chat over the phone. Hope you get it sorted soon. 
  • Mic80Mic80 Member Posts: 38
    Thank you xx
    I feel better hearing that. I have called my breast care nurse and she is
    going to try and get to the bottom of it...
    Also with radiation added to the regime it just adds so much time as I still need more surgery at the end of treatment.... sorry to sound so negative.... just need to get it all off my chest.. most of the time i am very positive and up beat.... just having a day so thanks for listening xx
  • SisterSister Adelaide Hills, SAMember Posts: 4,069
    Sometimes, things change for whatever reason and sometimes the team may forget to be explicit when they're talking to you.  It doesn't necessarily mean things are worse, just different.  A bonus for you is that it sounds as if you have a breast care nurse on your side.  It does make you feel a bit nervous, though, when things seem muddled.  
  • kitkatbkitkatb Member Posts: 412
    Hi @Mic80 ; This happened to me as well and it was a miscommunication between the team.  I was always told no radiation for me as I was having mastectomy back to the chest wall and would be nothing left to radiate with clear margins. ( albeit after 3 surgeries )  When I went back to surgeon for final check from Mx they mentioned radiation and I told them the Onc said no radiation. Needless to say I went home crying until 2 days later I got a phone call from the surgeon to apologise for putting me through that and he had made a mistake. The Rad Onc had rung him and told him definitely no Rad's.  ( it was a baby registrar surgeon ) He felt terrible but I felt fantastic with the that piece of news so was happy to forgive him.   Hope this might be the same in your case.  Cross fingers.    It is so hard when they change tack when you already have things sorted in your own mind.  Good Luck  with everything.  xo
  • SisterSister Adelaide Hills, SAMember Posts: 4,069
    I guess the important things to take from it is that your particular situation is being reviewed as information comes to hand AND that you have assistance in unravelling anything that seems anomalous or confusing.
  • Mic80Mic80 Member Posts: 38
    Found out this morning that def having radiotherapy.... it was a registrar that gave me the news I would not need it but Breast care nurse has looked into my history and has confirmed this morning I will need it..
    im happy they are being thorough and will do what I need to do, I just don’t deal well initially when plans so imperative are changed. I just need a day to process this new info and I will be ok. Onwards and upwards!! @kitkatb I also was confused as had mastectomy with clear margins so assumed (wrongly)  that I would not need it... but apparently because nodes involved they do it... never mind, it is what it is :)
    thanks for taking the time to listen and respond xxx
  • kmakmkmakm MelbourneMember Posts: 7,185
    You'll be right @Mic80. Big hug, K xox
  • Mic80Mic80 Member Posts: 38
    Yep I will :) xx
    thanks again x
  • GlemmisGlemmis Member Posts: 298
    It is good you know for certain now @Mic80, hope all goes well now x
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