Hi NicsB
Late to reply, but hoping you will still be notified …
I had cording following double mastectomy. It occurred in the right arm first (upper arm to wrist). I religiously did the stretching exercises in the Breast Cancer Now leaflet (usually provided by Breast Care Nurses during the surgery phase of treatment) at least once a day. It then developed in the left arm following 2nd surgery (axillary clearance that side). The cording wore off and eventually disappeared after a few weeks (maybe a month or so). I still do the exercises 18 months on (maybe once a week) as it seems to keep scar tissue looser and more comfortable.
I developed lymphoedema 6 short weeks following surgery. (Cancer - the gift that keeps on giving.) It is in my left arm, most noticeably in the palm and back of hand, and the base half of my fingers. Initially, I consulted 3 private lymph. therapists for a few sessions. The first did Manual Lymph Drainage, massage, heavy strapping (which my partner and I failed dismally at in our own attempts!) and received compression garments. The other 2 did the MLD which had some effect but any improvement was short lived. Then the NHS lymph. clinic appointments kicked off where I was measured and monitored, received all manner of compression garments and accessories to try out, a week’s worth of daily-renewed heavy strapping (which was horribly difficult to function with but made a big step change in lessening the swelling, which was only moderate anyway) and was told about pneumatic arm sleeve machines that are programmed to mimic manual lymph drainage. I decided to invest £1,000 in one because IT does the work while you sit and watch the telly. I let it work my arm for 35 mins per evening (2 sessions a day is okay, no more). It is definitely keeping the hand swelling to a minimum (in tandem with a compression gauntlet with fingers … when I remember!). I bought the Huntleigh ‘Hydroven 12’ model. But obviously, consult your therapist before deciding if it, or which, might suit you.
I stuck with Anastrozole (aromatase inhibitor - I’m post menopausal) for 10 months, expecting the side effects to lessen as time went on (AS I WAS TOLD), as my body became accustomed to the drug. Initially I got the joint stiffness/pain, the sleep disturbance, the fatigue and irritability. From 6 months on, these got worse and worse, my hair thinned significantly, and by 10 months I could barely use my dominant right hand, certainly not without strong pain.
I don’t like taking meds anyway, so I didn’t want to go down the road of taking medication after medication, each to counteract the side effects of the previous. Since all AIs and Tamoxifen basically either suppress all production of oestrogen in the body or render it inactive, the effects are likely to be similar (although apparently some people fare on one type better than another). I was also quite appalled at the other serious conditions that can be caused by these drugs, ones that are barely mentioned, if at all, in the booklets, never mind discussed properly. So I am now not having any adjuvant treatment, as I decided that the little benefit offered by bisphosphonates alone also wasn’t worth their potential damage. 8 weeks ‘clean’ and I’m getting back to the 63-year-old ‘me’, instead of the 90-year-old miserable geriatric I had become !
At first, I thought I would do whatever it took to try to reduce my risk of recurrence, but the cost to my quality of life was too great for the potential, statistical benefit.
This is just MY position; an alternative view. Do NOT let me influence anyone else’s decision. All I would say is, if you are not getting the full story from your consultants, educate yourself. Good luck.
