Hi naughty_boob
Bearing in mind everyone is different, here’s a complete rundown of my remaining ‘sensations’ 2 years post surgery (double mastectomy, axillary clearance on left side, radiotherapy to left chest wall, 10 months on Anastrozole AI with 2 zoledronic acid infusions, both of which I gave up on 10 months ago):
My scar line is quite broad vertically and continuous from armpit to armpit (because, at my request, my surgeon ‘went back in’ during second/axillary surgery to tidy dog ears and centre-chest bump, which was rubbing sore on all clothing). The scar is prone to tightening and always likely to be, so best thing for that is moisturising, massaging to loosen the inner scar tissue and the stretch exercises, as and when. It was a very bumpy scar to begin with but has very gradually smoothed out quite well. I have one small bump which gets maddeningly itchy for a few hours every so often (once a week?). When I questioned this for fear of recurrence, I was told it was ‘probably’ a dissolvable stitch that didn’t, but that they wouldn’t cut me just for that. (I might have to insist, as it is distracting too often.)
I asked my surgeon to remove as much breast tissue as he could possibly reach and as I’d decided against any reconstruction, there was no need to save any more skin than absolutely necessary to close my chest. That has inevitably left it stretched quite tight so, without anything other than muscle and ribs behind it, it remains taut, sensitive and tender (rather than sore).
I developed lymphoedema in left arm and mainly hand. I went to three specialist therapists for manual lymph drainage. A pleasant spot of pampering in 2 cases; it reduced a little each time but was short-lived. In the 3rd, massage accompanied by some uncomfortable heavy strapping with multi-layer pressure bandaging (which my partner and I failed dismally to replicate at home !)
Then the NHS clinic appointments finally came around and the lovely nurse taught me self drainage techniques, kitted me out with all manner of compression garments to try (some of which did help to keep the swelling down quite well) and eventually let me have a go on the pneumatic sleeve which delivers 30 mins of waves of pressure along the arm to encourage lymphatic drainage. I was sold! Bought my own machine for £1,000 and used it every night for months whilst watching the telly. I have suspended this routine for many weeks now … because it reduced the swelling to almost nothing, certainly not apparent to anyone else. (I never did have pain with it.)
I was lucky with radiotherapy (5 sessions of 15 mins, if I remember correctly). Didn’t suffer any burns, no pain and only very faint discolouration. I would say I get breathless quicker than I did though, even just climbing 2 flights of stairs. Each time I’ve flagged up my worryingly sore rib (hurts, as in it catches me if I turn over in bed and is very tender after sleeping on it but fades after getting up), they’ve said ‘probably due to the radiotherapy which has injured the bone - to be expected’. So far I’ve been unable to persuade anyone to grant me an MRI (for peace of mind that it’s not bone mets).
Nerve damage is the most disconcerting of all sensation changes. I think they’ve probably repaired as much as they’re going to now. That means I’m left with numbness and sensitivity combined (!?) in the same patches - underarms, but worse on the underside of the upper arms and behind the armpits, more so on the left side where I had double surgery. Weirdly, I can trigger a sensation in my chest by touching behind my armpit; obviously one of the nerves has re-routed its path/message.
Very fortunately, the only pain killers I’ve had to take were immediately after the surgeries. Paracetamol was strong enough to manage that moderate level of pain and was only required for a couple of weeks.
Sorry for the long post, just hope it might be a useful measuring stick for others.
Ive also found a lymphatic drainage therapist who specialises in women with breast cancer via a breast cancer charity in Kings Cross. Im seeing her Wednesday, so hopefully she can help. The stiffness and pain has been quite bad and would love to be able to sleep on my right side. Thank you so much for these suggestions. Much appreciated 
