Sentinel lymph node letter worse than what said at clinic

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Got to have full node clearance tomorrow bit as 2 out of the 3 sampled nodes had cancer in them. I was told been regraded to grade 3 but not absolutely massive change because I’m oestrogen positive. I really feel, as this has happened repeatedly, my consultant only gives good news. I kind of understand why but I just got back home ahead of op tomorrow and found his letter to GP. Says evidence of focal extranodal spread in one of them. All I can find on googling is that it’s a marker for poor prognosis. I am glad read the letter ahead of seeing my consultant for the node clearance but what he described as a setback is beginning to sound like stage IV? Or not? I can’t find anything in the chat which is making me think it’s quite bad. 

sigh and I really need to sleep ahead of op

  • Just to say good luck tomorrow. I think that the extra nodal spread happens in about 25-50% of nodal involvement.  I had one positive sentinel with early signs of it (whatever that means!), had level 3 clearance and not a dot was found. Only one sentinel was positive,  and didn't show on the ultrasound. 

    I imagine that you'll have chemo,  and if you had a lumpectomy then radiotherapy,  and after hormone blockers,  so you've lots of treatments!

    I'm only up the road from you geographically,  and was referred to them 5 years ago for a mammogram,  but that one came up clear.  I had my treatment 3 years later (April 19 - present at the Whittington. Xxx

    “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • Thank you, yes I had seen that the proportion of women you mentioned get this result. I’m hoping that the one negative node might be a sign the rest negative. I had to go to Whittington as Homerton don’t have nuclear medicine dept so logistical joy 4 weeks ago (I had mastectomy because extensive tumour) of Whittington first then over to Homerton. The procedure is done and I got apologies from very nice consultant about the upset this additional bit of info caused. And a possibly not very convincing explanation but there is as you say, treatment coming and lots of time to understand the data, of which there will be more from today. They are tending to be upbeat about fact my cancer is oestrogen positive and now I am getting used to their communication style I’m getting better at asking direct questions like so how does this affect my prognosis etc. Seeing breast nurse Thursday and maybe get drain out. Waited 4.5 hours to get my meds for discharge so occupied myself writing toPALS and friends & family feedback survey!

     Thank you for such a helpful answer

    Fran x