Hi all
Hoping someone will see this & know what I’m talking about.
Had CA Left boob Jan 2004. Had lumpectomy & all glands taken out, then mastectomy two weeks later. Had reconstruction (done twice as first wasnt right), then op on other boob to lift & reduce. Was on tamoxifen for 5 years which finished last year.
Ive been off work now nearly 8 months this year & was off 6 months last year. Have had tests/scans etc for secondries cos of the symptoms I had had. All are clear Im happy to say and a lump I had in March was shown as ok on ultrasound.
I have horrid shooting, burning pain in my boob that sometimes crosses to other side. Was diagnosed with carpel tunnel syndrome in both wrists in June. Have nerve pain sometimes going through my elbows, my wrists, and from boob down my arms.
My armpit has stayed numb since operations. Ive had good movement cos Ive done exercises every day as I have mild lymphoedema.
I’m under a physio, now have acupuncture, see a psychologist, am in the pain team system and last week started a six week programme of Pain Rehabilitation.
Ive been on strong meds for a long time now and after having to go cold turkey on my birthday weekend (from tramadol & pregabalin & diclofenac) I reduced my tramadol considerably. Ive not taken diclofenac since August but am back on it now & the slow release tramadol Im taking isnt enough.
Im basically a bit fed up at the minute cos I TRY so hard not to overdo things. I do exercises, try not to lift heavy things etc etc but think Im just headstrong & dont want to deal with the fact that I may have some nerve damage somewhere that might stay with me for life. I tend to do a lot on good days & end up in agony for days after.
Im in the middle of an employment tribunal & numerous grievances with my school (I am a teacher & had a failed phased return due to my school not letting me phase in slow enough)so am under a lot of pressure and strain. Am hoping thats why Im going through a bad spell at the minute but just wondered if theres anyone else out there thats had problems later on after surgery.
Big hugs to all you ladies out there cos I think youre all wonderful.
I dont come on here often but when I do Im blown away by your strength xx
I’m almost three years post-surgery and still have areas of numbness and the axillary clearance scar causes pain. I am on pain meds (tramadol,Fentanyl 12micrograms,co-drydamol, amitriptyline 20mg) but they have been prescribed for severe back pain. They do nothing to relieve the pain along the scar.
On my last check-up I mentioned the scar pain and numbness to the Consultant but whilst he was sympathetic he said it was ‘normal’. My scar pain is nowhere near as bad as yours sounds but I can understand that when the nerves are cut there is bound to be lasting damage. I know how pain can drag you down and how you feel no-one is taking you seriously but do keep nagging at the medics, it is awful that you are in such pain.
I’m sorry I haven’t been able to give you positive feedback, just my sincere sympathy.
AlexG
Hi geordielass, I am a Teesside lass, and understand how you feel I was dx 2006, lumpectomy, chemo, rads, and lymphnode renmoval. I too suffer from random shooting pains in my arm, and continuos numbness. I have to be careful in shops in case I knock things off the shelves !!
The rads have made my breast feel very tight and uncomfortable.and I have lots of fribrosis as a result. I tried some strong meds but I was zonked out, so on passed om them
Some days are worse than others, and it does get me down at times. My surgeon says, small price to pay, hey ho onwards and upwards !!
Hiya
i was dx in 2008 i have a lot of pain in my breast bone and under my arm the Doctor just ignored me when i told him i thought it was just me
Hi
I am so sorry to here that you are having such a rough time. I know what you mean about work i did not have a return to work meeting etc and it went pear shape. I to work in a school so know were you are coming from with that.
I have numbness and pain in areas were my breast was removed add to that muscle spasm/cramp if i do too much on the same site area. I was told the rads did damage to that area and nothing they can do about it (this was over 5 years ago now). I just live with it i suppose a small price to pay to be alive and still here but i do know what you mean about it dragging you down. I now cannot do even a simple thing like leaning forward to clean behind the toilet without getting a electric shock pain in my chest which takes my breath away…so it does not get cleaned very often now. Cyber Hugs XXXXX
I too had my op in january '04. I’m still numb under my arm and suppose I always will be now, and my breast is still very tender. I did have awful shooting pains, and cramps in my chest when bending over, but they were never constant and I haven’t had them now for the past two years.I was told the shooting pains where the severed nerve endings starting to knit together, and the cramps were rad damage and that both would go in time. I can imagine the misery all the pain and discomfort is causeing you - it certainly can’t help having all those work problems as well.
Big hugs, Josie x
Thank you to all of you, you’ve made me feel a heck of a lot better!
Like you say, some days it gets you down & is worse than others. It is a small price to pay but I find it difficult some days as its a reminder of something that I’m proud to have fought but want to leave behind me.
Am hoping for better days & a brighter future where my kids dont see their mum in so much pain at the end of the day 
Keep fighting ladies & lots of love & luck to you all
xxxxx
Hi geordielass, Just read your post and had to post back.
I am also having pain problems - peripheral neuropathy and taking lots of pain killers plus an anti depressant which has pain killer properties. Ankles and wrists are worst.
I too had lumpectomy and nodes, then 2 weeks later mastectomy.
I went back to work after treatment - March 2009 and like you the phased return didn’t happen as planned. I was exhausted, but knowing that redundancies were on the cards, I carried on, until I made myself ill. Looking back I think they tried to make work so hard that I would leave. Anyway, I was selected for redundancy. However, because I believed the company had altered the date of my redundancy to avoid having to pay my pension I went to Employment Tribunal 3 weeks ago. Minutes before the case was heard I accepted a settlement figure from the company.
I am now booking my first holiday for 8 years - only came on tonight to find out about travel insurance.
Will need to get another job, but need to get this pain sorted 1st.
Finished glass of port, so off to bed. Bye
Hi Ladies
I too had Mx early 2008 and am experiencing the pains you describe. I have no sensation in my armpit and down the inside of my arm and my reconstructed breast is just a ‘body part’ no sensation at all on the skin yet very painful at times underneath. I have rib pain all the time which prays on my mind that they have missed something.
My frustration has been with my BS & PS who look at me like I’m mad when I talk about all this and Because they can’t explain it then it clearly isn’t happening!!! I took part in the national breast reconstruction survey that the gov’t did in 2008. It involved 3 questionnaires over the course of the year and in the questionnaire it asked about these symptoms that we have all be describing here. This was my first inkling that I may not be alone. They wouldn’t have been asking in such details about nerve symptoms if they weren’t expecting any responses. I have recently been lucky enough to stumble upon the most fantastic GP who was the first person in nearly 3 years to look me in the eyes and believe I was really experiencing this pain and then suggest a plan of action to help it. I now take amytriptiline low dose and have had a course of relaxation/CBT therapy and both have helped.
Seem to have rambled on for an age, don’t mean to sound ungrateful as there are so many lovely ladies on tis site in much worse position than me but I do get frustrated with this chronic pain that I must accept will forever remind me of a rough few years.
Big hugs to all and good luck xxxx