Hi Ladies
Happy New Year to everyone.
Has anyone else had this problem? I was diagnosed with primary BC, hormone positive in April 07, lumpectomy, chemo & rads followed. Diagnosed with new primary in same breast August 08, hormone & HER2 negative this time, had mastectomy then no further treatment. However still taking Tamoxifen for the first diagnosis, but since starting with this in Nov 07 I have a constant ache/pain when sitting. I had a bone scan and CT scan prior to mastectomy in September which came back clear, but I can’t get to the bottom (pardon the pun of why I’m getting this discomfort (best way to describe is it feels badly bruised). Makes travelling very uncomfortable. I was wondering whether anyone else has come across this?
Hi Carol.
Funny you should mention this, as I have just started to have the same problem. I am on Tamoxifen, too. I don’t think my coccyx is as painful as yours, but I’ve certainly noticed it the past three days, and have been wondering why it is hurting.
I only started Tamoxifen in October 2008. ( primary dx in Feb 2008, mast.,chemo and rads )
I think we should mention it to our Oncologist team. As your is so sore, I think it would be worth speaking to someone sooner rather than later, to put your mind at rest,at least, rather than be worrying about it for months.
I had this a few years ago (nothing to do with Tamox) Just to say that what relieved my pain was to get a wedge-shaped cushion with a hole the shape of a capital D cut in it. The cushion is higher at the back than the front and your coccyx is suspended over the “D” hole when you are seated.You can find one by Googling coccyx cushion.
Think you should mention to onc though; this message was just suggesting a way of relieving pain. I used to take my cushion everywhere and explain in unnecessary length that it wasn’t cos I had piles,. lol. If onc can’t help then I would ask to see a physio.
Browsing through the messages on here and this really took me back. I had tamoxifen after my initial diagnosis in 1996. Took it for five years and I can remember suffering with coccyx problems, which resulted in me taking medication prescribed by a homeopath. I know it stopped me doing certain exercises at the gym, but was never agony. My onc at the time said it was caused by the hormone changes.
I have also recently started having pains in my coccyx even though I started Tamoxifen in March 08. I thought that I had strained my back, but it seems it may be the medication.
I’ve also been really ‘itchy’ on my back and shins - where I have been scratching in my sleep I now have skin like a leopards, covered in brown scars (I paint a lovely picture of myself, don’t I?) has anyone else had this?
Louise, I got a coccyx cushion from Argos for my seat at work. I must say it has relieved it a little so thanks for the suggestion - but oh how I wish I could get rid of the pain altogether!
Hi, I was hopefully putting my surgery and radiotherapy behind me and walking lots to get fit again, when I started getting pain in the coccyx. I thought it would be an irritation which would go away but a month on it is very painful and I’ve been referred for physio. Very interested (on researching more) that Tamoxifen may be the cause - I shall tell my G.P! and, as suggested, my oncologist. Thanks for posting - it is good to understand these things and not just feel you are a wingeing wreck@
Lyn
Hi, I’m posting on this thread as I’m hoping someone might have an answer for me. DX sept 07 had usual regmine of treatment and taking arimidex. Suffering with coccyx pain for about a week now, not so much a pain as a dull ache really, made worse when sat down. I’m now starting to really worry it’s something to do with the cancer returning and am really scared. I’ll get it checked out as soon as but just wondering if anyone could offer any reassurance if they’ve had a similar thing, has it just gone away of it’s own accord. from reading here it sounds as if it could be meds related. any help so much appreciated xx
Hi Carriemitch
I can’t believe I originally posted this a year ago today! I am now into my 3rd year of taking Tamoxifen. I still get the odd pain in my coccyx when I’ve been sat down for a long time and I still use a wedge shaped cushion at work. The pain has eased off though. I think Anne is correct when she says that it may be down to the changes in hormones.
What finally relieved my pain was a specialist massage while I was on holiday in May 2009. I had 2 full body massages, given by someone who had been trained to work with cancer patients. I told him where I had problems and I can honestly say that the problem has been no where near as bad as it was.
That massage sounds wonderful. like most i feel like i have the mobility of an old lady. Would welcome a massage in the future.
The Trust I am under give every patient 6 free treatments of choice , i have gone for Reiki , found them great , never felt as calm in my life, going to continue them , helps my state of mind.
Thanks so much for massage advice. My onc sent me for bone scan today just to make sure all ok. This has sent me into a bit of a tail spin as I hate worrying over every ache and pain and the agony of waiting fir results. I am on arimidex as opposed to tamoxifen so just hoping it’s down to the Meds rather than anything else as my joint are really achey at the moment. I’m wondering if the cold makes them worse! Glad I’ve got three weeks in Thailand at beginning of feb. I’ll def try the massage. It seems so much better than other days so feel sure it can’t be anththing sinister fingers crossed!! Thanks so much for replying. Hope you are all feeling well. HAppy new year carrie. X
I too have this problem, was only discussing it with my sister last night. I was on Tamoxifin for 3 years, Arimdex 19 months and now Aromasin. I do have bone mets but nothing in the Coccyx. I can only sit in my computer chair with cushions, if I sit on normal hard chair then I can’t get up.
I don’t know there is any basis to my own little theory, but I will mention it anyway.
I sometimes wonder if the hormone drugs cause a redistrubtion of body fat, I have gained lots of weight but mostly on my stomach. When I am sitting down my I can feel the seat with my bones, Coccyx, pelvis. I have plenty of padding on my bottom so you would think that I would be well padded whilst sitting down.
My friend who has a different health problem and is on a cocktail of drugs has lost a huge amount of weight but gained it in two areas on her body. So just wondering if that is what could happen when taking these hormones.
My bone scan was all clear! Wooh. Still got mild coccyx pain. He said I could have MRI to make double sure but he said he wasn’t worried so… Phew! Will just have to hope it goes in time x x
In the last couple of weeks I’ve had to put a cushion on my computer chair for the first time. The pain is in my bottom but I think it’s probably caused by my left hip. If it lasts more than a few weeks I’ll get it checked out.
I’ve been on Aromasin for 2½ years and have joint pain in various different places. I seem to get bad pain in one area for a time - perhaps a few weeks or a couple of months and then it moves on to another place. Both hips bother me intermittently. I’ve also got pain in both feet which my GP is pretty sure is caused by the Aromasin.
Best wishes everyone
Anthi x
This is my first post although I’ve often visited this brilliant site and find the advice & posts very helpful.
I was amazed but pleased to find so many posts on the subject of persistent pain in the coccyx - it is good to feel that you are not the only one. Following a mastectomy & axillary node clearance in 2015 I had chemo (FEC-T) & rads, then made a good recovery, apart from the many side effects which still persist.
Peripheral neuropathy, lymphoedema, post-mastectomy pain syndrome etc are all well documented and I just try to put up with those, finding distraction and keeping busy the best. I don’t like taking pain killers long term.
The pain in my coccyx started soon after finishing chemo over 18 months ago - it has never gone away and gets me down sometimes. It is worse after sitting or driving and I try to sit forward at the computer, or lounge on my side if watching TV. A spinal X-ray was clear. After reading a lot of stuff I now think it may well be caused by Letrozole which I started at the end of rads. I am also on adjuvant IV Zoledronic acid every 6 months to reduce the risk of bone recurrence and osteoporosis, but that started later.
I hope this might help someone else who is experiencing this pain - I need to stay on the Letrozole but will report back if it ever eases!
of why I’m getting this discomfort (best way to describe is it feels badly bruised). Makes travelling very uncomfortable. I was wondering whether anyone else has come across this?