Back & Knee pain getting worse after treatment

I have completely finished all my treatment following a double masectomy.
Just had my 11 hour op for reconstruction which is brilliant.
However, i have suffered all the way with back pain and knee pain and it seems to be getting worse. I have been on Tamoxifan for 2 and a half years and suffer with horrendous hot flushes up to a dozen times a day.
Is anyone else suffering or have any advice xx

Bumping up for Tracey

Hi Tracy
Great to hear that you are pleased with your reconstruction. I’m due for mine at the end of the year. Nice Christmas present!
I too have had an awful back since the start of my chemo which was last December. I finished in March and was hoping that it would improve but sadly not. I also have pain in my knees and now after sitting down struggle at first to walk as my heels hurt.
I have had massages throughout and seen a chiropractor more recently which has eased my back a bit but still take amiltrytoline (apologies for spelling) nightly as well as pain killers in the day.
I’m not sure why I feel so awful apart from the fact that the chemo is such an agressive treatment.
I dont know what to suggest but it’s nice to know we’re not on our own.
Mx

Hi Tracy and Mandy,
I finished my chemo on 4th Jan this year, and started on Tamoxifen straight after. Since I started on Tam I feel like I’ve aged about 20 years. I have back pain and joint pain all the time. I struggle just to get in and out of the car. I feel about 68 not 48. And the hot flushes and sleep interruption don’t make life any easier.
On another thread on here I asked whether Tam was responsible for my symptoms, and the resounding reply was YES. But apparently these side effects vary in severity between different brands of Tam. The most popular (if that’s the right word) brand seems to be Wockhardt, as more ladies said their side effects were slightly better on this brand. I’m already on this brand, so I think I have to just accept that this is as good as it gets. I don’t know whether this is of any use to you, but maybe trying a different brand of Tam might make a difference?
I wish you both well
J x

Thank you all for the comments and good luck with it all. xx

Hi Tracy,
i had the exact same - my leg pain was getting worse and i was blaming the tamoxifen - but my oncolocist thinks that its my (hopefully temporary) menopause thats causing it. i guess it could be a mix of th two. i finished chemo in feb this year and started tamoxifen in march so hoping that the pains will go soon - but as yet no luck. xxx

Thanks for your posts - it is a year since i had my last chemo session and started on tamoxifen shortly afterwards - the pain in my lower back, joints, particularly my knees, feet and hands is unbelievable. I am 44 yet i walk like an old lady. My onc denies its the long lasting effects of chemo or tamoxifen!!! Then what is causing all this pain?? I am becoming accustomed to rolling out of bed on my hands & knees and pushing myself up using the bed and bedside cabinet. Once in the standing position i then hobble down the stairs. I have tried ibuprofen, oramorph, zomorph, dihydrocodeine, co-codamol, amitriptyline, tramadol, diazepam without much success. I am seeing my gp next week to discuss alternative treatments and some scans/x-rays. This is worse than when I was having chemo. Wishing you all the best x

Thank you all so glad Im not alone. Good luck xx

Hi Everyone,

I finished my Chemo a year last March and started on a 5-year course of Letrozole. One daily.  Since then my body seems to have aged 20 years or more.  I’m 57 now.  I am barely able to walk properly at times.  Standing up from a seated position is absolutely excruciating.  When I mention all of this to my doctors and ask if its an after-effect of the Chemo or a side-effect of the Letrozole they just shrug their shoulders and say “I shouldn’t think so” - what does THAT mean?  They are certainly very unwilling to help in any way or offer any kind of help or support.  I hurt so much I want to hide under the duvet most mornings and NOT get up because I know the level of pain I’ll be in for the rest of the day.  I would just like to ask someone whether or not this will all go away, or at least lessen, once my five year course of Letrozole comes to an end, or is it something I’ll have to cope with for the rest of my life?

I’ve also been left with arm lymphoedema.  My right arm and hand are affected and I’m right-handed which really affects me badly sometimes.  I get very ‘down’ about it AND having to cope with all this bone pain.  Its good to know though that I am not alone and that the Letrozole COULD be the source of it all.   Thanks for reading this.

Hi - am realy intrigued to hear about your back/knee pain. I finished treatment (I had chemo, then op. then radiotherapy) mid-June but, since mid-May, I have been in terrible pain with the right side of my back and R hip. I have basically been lying on the lounge floor, or on a rug in the garden, for three months, I can’t walk further than round the house and I am only in my 30’s…with a 6 yr old. I suffered back pain before my cancer diagnosis (no one ever found a cause, my MRI of spine is good) but I’ve never had a flare uplike this that has completely stopped me doing anything normal. Weirdly, during chemo my pain almost vanished - my oncologist said there is a strong anti-inflam in chemo but my pain doesn’t respond to even the stronger anti-inflams I’ve tried. I am on oral morphine. Feeling very low about it as I imagined I’d be regaining my life/health now. I guess you are similarly frustrated? 

Just thought I’d mention that if you’re suffering from just back pain its worth checking out if you may have a compression fracture of the spine. Osteoporosis is common in women over 50 and chemo can increase this risk. Compression fractures of the spine are common symptom of osteoporosis.

hi Tracy, I have had a mastectomy (right breast) been through chemo and just finished radiotherapy. started taking Tamoxifen day before yesterday so far so good only having hot flushes 2-3 times a day

Hi Everyone

I can relate to all you girls. I have completed all my treatment, but whilst having Chemo right up til Dec 14  I suffered horrrendous back spasms and ended up in hospital.  I could not even get out of bed to go to the loo.  The pain management team were called in the middle of the night as i was in real horrendous pain they put me on countless amount of pain relief drugs to try and subside the pain.  Including MST which is a slow release Morphine which is taken 12 hourly released also oramorph as break through pain and diazapam as well as Tamaxifen and some other meds.  I have since had Radiotheraphy and suffered a major reaction and continued to suffer with back spasms and pains and stiffness in my fingers body and legs as well as lymthadema in my right arm which is also really painful even taken all the meds.  I have since been changed medication to OXycontin and Oxcodin and Oxynorm as breakthrough pain as well as Diazapam.  Can anyone tell me if they have had a similiar situation as I feel like there is no plan for me to come the medication does that mean I will have this for life.  My Consultant has also referred me for Acuputure.  Can anyone help not sure where i am going and if there is a way out?  Me and My Hubby would appreciate any help. :) 

Hi I have my 5 yr apt tomorrow and wondering if ill stop the tamoxofen
?
I had major hot flushes for the first year every 30 mins lasting a minute
I get them rarely now
Ive had mood swings ive gained weight 2stone,my hairs thin my nails r thin i ache all over mback and my left knee ouch it feels like the cartlidhe has popped burning crunching ??
I have agood week then a tired week im in pain after several surgeries
Ive had a left mastectomy and reconstruction muscle removed from back skin expanders , ports attached and drains
Implants x4 times put in then took out
out
Im possitive and do have an active life i have four hourses and 4 children lol so a full time busy mum
They are whats got me through as these tamoxofen havent been easy but i took them knowing it was the best way forward after the radio and chemo
Apparantly if you cant tollerate the tamoxofen then theres one called arimidex but my oncologist said if you think the tamoxefen are bad then these are the badboys so i stayed with tamoxofen
Good luckxx

Hi all,
Well I’m 2 month post radiation and haven’t started my tamoxifen yet…dislike the thought of it. But as for me after about 4 hours of work I have incredibly bad back pain. And my right shoulder is very painful. I’m 51 now and feel much older! Could be the chemo as it is mustard gas used in warfare! Hang in there ladies. Still debating about tamoxifen. …
sue

Oh yeah sorry…incredibly joint pain too in my wrist and knee!

Hi, I’m am new to the forum. My advice would be to see your GP about the back pain with a view to having a bone scan. If you get no joy from him, contact your oncologist, Breast Care Nurse or Cancer Specialist Nurse. Please do not ignore it. Lindylou3 xx

hi i put voltarol one mine khee end de pian got worst dit enny 1 had dis be foor i got to say i do have lot of fluwit in mine khee

you need a best treatment for your back & knee pain and you have to treat yourself well beacuse this type of pain are very dangerous so, you have to make a treatment of your pain…

 

thanks

I was on Anastrozole after my Mastectomy four years ago. I suffered terrible back, knee and ankle pain. It was not suggested that the tablets could be the cause until I read on a forum other people had suffered this side effect badly. I mentioned it to my BC and he agreed it could be. He worked out the percentage chance of my cancer re-occurring and it was found to be very slim. We decided to stop the tablets. It took a couple of months, but eventually the pain completely went away. Sometimes you need to chose between the quality of life and the risk of returning cancer? I was unable to tolerate Tomoxifen either. I am now four years on, and still doing ok.