Hello.
Sorry, Cazy124, that my reply is too late to have been of any help to you. (I hope you are getting through this initial recovery phase okay. It is still early days.) But sharing stories is always useful, even in hindsight, and may help others new to this thread if it is relevant to them.
(LauraR: I so identified with your conviction of spread, and the dread of each new scan’s results appointment, and the “how much worse is this going to get?”. And then to discover, after you’d just gone through the surgery, that there was to be another op, such gut-wrenching news … again.)
I was postmenopausal at 62. Following a double mastectomy - two breasts, two different cancers - with only 1 node positive in the end (out of a ‘suspiciously few’ 9 reported on). It wasn’t one of the sentinel ones, so deep gratitude to my surgeon who spotted it during the mastectomy surgery), but without being able to know at that stage that it was the only one, I opted for the more radical route of axillary clearance (on that ‘involved’ side) as being a more tangible look at the situation, rather than blindly zapping my armpit with radiotherapy … which I did have on the remaining chest of that side, as adjuvant treatment for the ‘worst of my two cancers’ - invasive lobular.
I am sorry to have to report though, that as a result of clearing out most (or all? who knows? not me) of the nodes on that side, I then went on to develop lymphoedema in that hand/arm for my trouble … unusually fast within 6 weeks! Even though I now have this lifelong condition to manage which can be pretty frustrating at times, and may get worse in time, I still believe that, on balance, it was the right decision. Otherwise, I would still be fretting (if I’d opted for armpit radiation) that it may have left a rogue, resilient positive node or two behind.
(In response to a post in a different thread) I’m afraid I have no idea to what I should attribute the lasting numbness around my armpits and ‘bingo wing’ areas - the initial mastectomy surgery, or the axillary clearance surgery with bonus ‘dog ears’ tidying up - since one followed hot on the heels of the other. There has been no satisfactory aftercare in the way of a thorough follow-up review, examination or discussion with a consultant (13 months on), just one cursory telephone check-in with a nurse. A second call has been postponed 3 times - now scheduled for 16 months post-surgery. The team who dealt with my case have now all left the hospital and it is down to one consultant surgeon, one consultant oncologist and ‘specialist doctors’ from a consultancy/agency.
I am now pushing my way through the necessary hoops to investigate concerning symptoms. I fluctuate between being convinced that the sneaky, very-hard-to-detect-on-anything-other-than-MRI invasive lobular breast cancer has managed to metastasize to a very tender/painful rib and beyond, with other niggling symptoms, to then thinking “surely it’s too soon for any development yet?!”
The cancer ‘journey’ (sorry) is a series of leap-of-faith, yet life or death, choices and it is the most awful of situations to be in. The only consolation is that we (on this forum) have all been there too. It seems that the latest protocol is to invite (put the onus on) patients to roll their own dice when all we want are some guarantees.