Letrozole and Arm Pain

Hello kajay8. Is the arm pain in both, or just the arm on the side of the mastectomy/lymph nodes removal? I'm not on Letrozole yet - will be having radiotherapy first - but I've had a full lymph node clearance and am experiencing the same sort of pain as you have described. I only had the surgery a few weeks ago though so am still recovering, and doing the exercises, but was told that there was a 1 in 3 chance of long term pain/discomfort after the lymph node removal, plus there can also be long term damage to nerves.

I understand that Letrozole can cause joint pains but your arm pain sounds like it could be connected to the lymph node surgery if it's only in the arm on that side. You won't be bothering your doctor/medical team if you let them know what's happening, and you may need a referral to physio, so it's definitely worth letting them know. I hope that they can do something to help relieve your pain and discomfort.

Hi, it’s not my lymph node removal arm. It’s the other one. I don’t get any pain in that arm. I’ve made an appointment with my doctor. I’ll let you know how I get on. Thanks for replying. 

Hi

i have exact same pain in upper arm and it’s like a pulled muscle. Very sore if reach to get something at side of bed ! Was in other upper arm too but just realised I’ve not had any bother for while . I take painkillers which help. I’m not sure if it’s kadcyla or letrozole… pain all over really in joints feet heels fingers , horrible 

Yes, it sounds like what I’m getting with the pain when lifting my arm above my head, or reaching around my neck. The pain is excruciating but subsided after a few seconds when I stop reaching. I’ve had results from x rays they took of both my leg and arm. Looking for anything suspicious in bones. Receptionist told me nothing if any concern found, which is good news, but I can ring in morning to speak to doctor about my pain. I’ve also started up this last week with Intermittent itching under my arm and around to my back. It’s been slightly sensitive and bit numb since my single mastectomy and all my lymph nodes removed back in July 2020. There is no rash, just a tingling and crawling feeling now and again. 

Kayjay8, I had similar, but had this after surgery and was just one arm, after 2 ops (one on haematoma) I had a lot of inflammation, and hurt to put arm up in position for radiotherapy.  Is it worth you getting a referral for Physio ? This cured my pain in one session. Cording ? I could see no cording but physio manipulated arm in a strange way, and hey presto, sorted straightaway. Could be the Letrozole though. The pain was waking me up daily at 4.00 am and ceased when I got arm moving .It has not returned since. Physio took me through every movement I could do and couldn't do, something to do with that large pectoral muscle we have. Gave me exercises to do which were harder than the normal ones we are asked to do after breast surgery.

I did have cording in my right arm after surgery but physio sorted it. It’s my left arm that I get the pain, and it wakes me up when I turn over. Almost like I’ve been lying on it uncomfortably. It subsides when I take weight off it. Probably Letrozole. It’s the only side effect I get, and joint pains but they stop once I start moving about, so quite lucky as I didn’t want the hot sweats that I got when I was going through menopause.  I’d finished menopause when I was diagnosed with cancer. I’m 62 this year so no spring chicken :) 

Hi kayjay8. I’ve started having pain in my upper arm too. I’m worried about the bone cancer thing but hoping it’s just the letrozole. My consultant is booking me in for a bone scan so I’m keeping everything crossed that it will be ok. You’re definitely a spring chicken I’m 75! Best wishes.

Hi Kajay8,

I have been on Letrozole since 18th November two weeks before my surgery as I joined a trial Poetic A to see if there were any benefits taking it prior to surgery namely to shrink the tumour.

The first brand I had was Accord and apart from hot flushes I was fine however since then I've only been able to get Sun Pharmaceutical brand and the pain is horrendous it came on almost instantly. Pain from elbow running down the bone on my left hand side but worse is the trigger thumb and swollen hand on right hand surgery side. So debilitating especially when I'm right handed. Nothing takes the pain away at all. Just awaiting Pharmacy getting back to me re trying another brand as I've read a lot on here that different brands can cause different symptoms.

I'm 60 and like you relatively active and finding this on top of everything else so frustrating.

I hope that you get some relief from your pain too.

Take care xx