Our nurses have been asked to write an article on “post mastectomy pain syndrome” for a cancer journal. They would like to include some quotes from you about whether you have experienced chronic pain, even years after your treatment has finished.
This could be pain from surgery, pain from using Aromatase Inhibitors, or pain from lymphoedema swelling etc. No need for lots and lots of details, but a few sentences about your experiences (especially around 3-5 years after your original treatment) would be really helpful.
Please note that if you do post on this thread, your comments may be used in the article.
Thank you very much on behalf of the Breast Cancer Care nurses.
Hi.
Chronic back pain with Arimidex. (diagnosed 26/9/2006) Started Arimidex after oopherctomy(spelling?) in January 2008, so still a while to go!. Recent physiotherapy visit concluded that joints nos 3,4 and 5 were very stiff indeed and that back muscles were all to hell (technical term) too as result of LD recon.
After finishing chemotherapy (FEC/TAX) last July, I am still experiencing disturbed sleeping patterns, muscles pains in my thighs, joint aches and stiffness in the morning and fatigue as well as some loss of range of movement due the LD flap procedure. Not quite back to normal…
I had a mastectomy 7 years ago with clearance, and I have been in some degree of pain ever since. Some days it is not too bad, sometimes much worse. Nothing has helped - painkillers do nothing, treatment for nerve pain does nothing; mostly I just live with it silently, as it has just become part of my life now.
Thank you moser, tina45 and Alloway for sharing your experiences. If anyone else has anything to add about chronic pain after treatment, it would be very helpful to hear them.
my problems started with tax, 2 days after getting tax i had severe pain all through my body. and this lasted until 2 days before my next lot of tax when i got slight relief and then it stared all over again. when i finshed my 4 lots of tax the pain eased slightly but has never went away. i get times where the pain is mild and there are times the pain is severe. i have pain every day and no pain killer has helped so i don’t take anything. like what moser says i just live with it.
i don’t have a life anymore, i have been medically retired from a job i loved. when i go out i need help as i am prone to falling. i have nerve damage in my surgery side so that hurts. i am housebound now.
my life before all this - i went to work, came home and tidied up. took care of the family and on fridays went to the gym and ran on a tread mill. would go out for walks and was a fairly fit person… i just want my life back and my independance.
I finished treatment 15 months ago (and had my surgery 21 months ago).
Since my surgery I’ve had constant shoulder pain. I religiously did all my exercises except when I was too poorly during chemo and have good mobility but constant pain. I’ve had a year of physiotherapy but she says there’s nothing much more she can do. The shoulder and arm have been considerably weakened by the surgery - I have difficulty unscrewing lids for example. Anything that requires me raising my arm such as putting out washing gives me more pain.
The physio and a massage therapist I’ve been seeing both think it’s to do with the surgery, the tissue loss on the chest wall and all the scar tissue both on the chest and under the arm (I had a radical mastectomy, full axillary clearance, seromas and a portacath all on that side).
Some days I get terribly depressed as the pain makes me feel so tired. I can’t take antiinflammatories as I’ve also been left with severe acid reflux following the chemo. That’s another pain in itself.
I had a busy, active life with a demanding job prior to treatment. Like Vodka, I’ve had to give that up. Most days though I try to keep positive and think to myself that I’m lucky to be alive.
Since having a bi-lateral mastectomy and full axillary clearance 14 months ago I have suffered constant shoulder and upper arm pain - no pain killers have helped. The shoulder pain causes sleepless nights and it is impoossible to sleep on my side due to the discomfort.
Since my surgery in April 2009 I have not had good nights sleep. I have to sleep with pillows supporting me and I toss and turn. I am back to work and it is difficult how this cumulative loss of sleep and constant ache in my chest/ shoulder is affecting me. I too have been left much weaker in this side and have difficulty opening or grasping things. Part of my job involves working on a computer and writing I really have to pace myself to prevent lymphodoema. I seem to live on analgesics
I had three operations over five months culminating in a right mastectomy after two ‘lumpectomies’. After the final surgery my right (dominant) arm was useless! It felt as though it was empty of muscles!!! It was so very weak and my shoulder really ached! All the exercises were attempted but they were so hard to achieve…
I subsequently had cording through my breast and received six months of massage and physio. It continues to feel weak and pretty useless still - 14 months after mx! Reaching and stretching are particularly acute.
Now to make matters worse I broke my right arm at Christmas which has developed carpal tunnel problems. I can’t believe my right side is so weak and weary.
Unfortunately I haven’t developed fine motor skills with my left side! Oh to be ambidextrous!!!
The chronic fatigue in my right hand side before and after ‘break’ is a very real issue in my recovery. It is a pain that surgeon,onc and BCN don’t really recognise. They all say it should have improved by now…
Feel I’ve aged so much… Can’t seem to do any activity for that long on right side without needing a ‘rest’!!!
Hi
I had WLE in September 2007. Have had pain in my breast and down jy arm since then. Nerve painkillers don;t relieve this at all.
I’ve been on Aromasin since September 2010. This initially aggrevated my migraine but that problem has now been solved by taking other medication. I can’t believe how stiff my joints are, mainly the lower half of my body This severely restricts my activity as I can only walk for short periods of time. Before this I could stride out for England.
I had a WLE followed by ANC in Sept/Oct 2006. My breast still aches a lot of the time and I get rib twinges, plus the muscle under my shoulder blade often aches. My knees have never been the same since Taxotere, when I suffered side effects at the extreme end of the scale consisting of agonising joint pains and severe fatigue (like somebody with ME). I was in bed for pretty much most of the 4 months I had treatment with it and was only going out for hospital appointments. I suffered a really bad chemo burn that didn’t emerge until about a week after the last infusion and was in isolation for a week. The fatigue was with me for about another 8 months after this.
I’m finding a couple of gym sessions a week helps my knees and has strengthened the bad arm and shoulder a lot.
I had WLE in July 2007 ,still get intermittent stabbing pains in Left breast and through the nipple, rads caused a frozen shoulder for 18mths which was excruciatingly painfull with very limited range of motion,physio didnt help so had 3mthly Cortizon injections,shoulder still aches if i use my arm too much and still have only 80% range of motion.Now on hormone therapy and suffer with increased Migraines (often once or twice a week) stiff joints in mornings and if sat for too long, horrible foot and leg cramps daily (often feel like ive been kicked) and now recently i have started to suffer with odema in my feet.Veins still knackered and hard from chemo which makes blood tests horrendous, i also suffer with acid indigestion.
Sounds awfull now ive read that back, but i manage ok and am told things should improve when i finish Hormone Therapy . I hope so .
Linda x
im still in pain 5 yrs down the line ,think its from the ais as joints are really sore and i find i cant walk far and it keeps me awake at night .doc keeps telling me its probably nerve damage from surgery but as its on the opposite side from my mastectomy im not sure .i spend a lot of my days hooked up to a tens machine just to get some releif.!
also developed osteoporosis after arimadex .
Hi too everyone , i was diagnosed 2008 at the age of 40 with invasive ductal carcinoma grade 2 , had mastectomy chemo and radio . i am now on tamoxifen . i am in pain daily with my legs . my right arm is really weak , has anyone had pain from taking tamoxifen , thanks anita
Hi anita I am on tamoxifen and suffer with joint pain and stiffness if I sit in one position for too long.I have read that tamoxifen in premenopausal women can cause slight bone loss.My periods stopped whilst I was on chemo so I may of been thrown into menopause and its the lack of oestrogen causing the aches and pains.I know my bad feet are side effect from tax chemo.
Oh i’m so relieved to find this link, i finished my treatment in November 2010, following WLE Chemo and Rads. Tamoxifen is causing me horrible side effects, particularly in hips and hands, i feel like an old woman and i’m only 42! Has anyone got the same? I’m wondering what vitamins etc to try?
On venlafaxine for the hot flushes too.
Thanks
Kathy
This may be too late but for what it’s worth I’ve experienced breast pain during the 6 years since my treatment! It’s lessened in the last year but seems to recur if I’m under stress, for some reason. FYI I have not had to take any oral hormone treatments. ‘Just’ had surgery, chemo and radio.
Hello, I’ve just started a new thread on this subject, and then noticed this one. Leah, do you have a link to the article the nurses were asked to write, please? I am wondering if I have post mastectomy pain syndrome you see
Thank you for your post. This thread was started in 2011, but I will contact the nursing team to see if they can provide any information about the article.