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ILC with axillary and superclavical

CheaChea CairnsMember Posts: 29
Hi everyone. I just found this group and I would like to know if anyone has had surgery to the superclavical nodes. I have just seen the Radiologist on Monday and was given 3 options. I have previously been on Letrozole for 2 years with shrinking of all. Now the meds are not working and things are changing. 1. Surgery to superclavical, axillary and breast. 2. Radiation for 3 weeks 15 sessions. 3. Chemo. 1 am 71 and very undecided as to what to do. Thank you for reading. 🙂


  • SisterSister Adelaide Hills, SAMember Posts: 4,536
    Welcome.  No, I haven't had surgery to superclav although quite possibly nodes were removed as part of the mastectomy - apart from that, my treatment seems similar (although I had chemo first then 15 rads) and part of the rads was directed at the superclav area.
  • CheaChea CairnsMember Posts: 29
    Hi Sister. I was talking to you on the online network. Can I ask did the rads improve the superclavical nodes. This is my main issue. And do you suffer from any Lymphodema. 🙂
  • SisterSister Adelaide Hills, SAMember Posts: 4,536
    I have no idea what impact the rads had on the nodes - I believe that everything that was suss was taken out but I guess they were trying to be certain as my ILC is pleomorphic which means it moves quickly.  So far, I haven't had lymphoedema (and I must admit to being scared stiff of it), but I did get quite bad cording after my surgery even though I did all the recommended exercises religiously.  Due to that, I went to a specialist clinic regularly for about 18 months.  It got worse suddenly during chemo but for some reason, at the 18 month mark it settled down, although I realise it may flare up again.  At that clinic, I have been manually measured as well as having an L-dex done.  Please make sure that you have these measure done before you have any further treatment - if your hospital can't do it, try to find a lymphoedema specialist who can, even if it is just the manual measures.  It will give you a baseline should you be concerned at a later date.  It really should be offered to all before treatment but generally isn't.
  • CheaChea CairnsMember Posts: 29
    @Sister. You have been through a long tunnel. I really do feel for you. :-) You take care and can i say you have been very informative and I Thank you for that. :-) I guess this is what I am trying to avoid. At 71 the Big C is in our family and i have seen too much of non quality of life. I want quality at my age. Irregardless. I have my next Oncologist and Radiologist app on Monday. I am going to ask for these tests and a bone test and see how long my window is. Nice chatting with you Sister. :-)
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