Had hospital appointment
Had hospital appointment Hya, just an update to say I went to my appointment for the pain behind nipple, Onc advised it is just scar tissue, asked her about the joint pain, told her I could hardly walk on a morning and if I sit for a while then try to get up it is nigh on impossible, asked her if it could be the Tamoxifen and she said she has never heard of Tamoxifen causing joint pain???Have come away feeling as down as ever, like they just don’t listen to you, to make matters worse I went to cross the road this morning and tore my muscle in calf, so had 3 hrs in casualty then the breast clinic was running 1 hour late!!
Onc did say the Tamoxifen could be causing very heavy painful periods every 3wks and she mentioned having injections every month with medication to temporarily stop them, does anyone know anything about the injections etc?
I am sorry for moaning but feel heaps better now, Rowlaine x
hello again Hello Rowlaine
Doesn’t sound like you feel reassured by what the oncologist said about scar tissue, or have I read that wrong? Did she suggest how long the pain might last?
I also feel generally stiff all over first thing in the morning, and I have little flexibility in my ankles which results in me walking heavily and rather flatfooted until I have ‘warmed up’ - I’m not very speedy at getting down the stairs.
You will have seen on this site that loads of people have talked about joint pain linked to Tamoxifen. I found it immensely helpful to hear about the experiences of others as I thought for quite a while that it was just me suddenly succombing to the effects of ageing bones, which was quite depressing. I suspect some drs don’t make the connection because ‘joint stiffness’ isn’t listed amongst the possible side - effects of Tamoxifen(see leaflet), and not all will take on board what their patients report to them.
That calf muscle sounds painful - do you think that was anything to do with your mobility being affected?
Sorry, I don’t know anything about injections to stop heavy bleeding. I hope they help. Having frequent and heavy periods really drags you down, doesn’t it…and as if you don’t have enough to contend with.
Do take care, and I hope you feel better soon.
Best wishes
Timetraveller Hi Timetraveller,
Yes you are right I do not feel reassured about the scar tissue, I do feel a definate lump behind my nipple also one under my affected arm which is really painful but she said she could not feel them, I will just keep an eye on them and hope they settle down, I do feel as if my calf muscle is because of affected mobility, I did try and take off into a run because a bus was coming and he had put his foot down, I knew straight away I had done something because I heard a pop!!! then had to hop across the rest of the road, I have stopped taking the Tamoxifen and I do feel alot better aches and pains wise, loads more energy etc.
I do feel though that once you have finished your treatment that the aftercare stops, I have left messages for my breast care nurse but she does not reply, hence you are made to feel that you are a hindrance, like you say a little reassurance would go a long way.
I am glad she took note of my periods though, I have an appointment for a scan and to see a gynae, so I will feel loads better when they are sorted out, some good news anyway,
Thankyou again for your reply, take care
ps Hello Rowlaine
Hope you don’t mind me asking - was it your decision to give up Tamoxifen or did onc suggest it because of the heavy periods? Glad you have gynae appt sorted.
I am fortunate that on the whole most of my hospital experiences have been very good, including aftercare - especially excellent from the plastic surgery team. The drs at my surgery are also great, and I have been able to talk/ask advice from them on the odd occasions I’ve needed to.
When I found a new lump in my reconstructed breast a year after the op, the very nice locum said, after examining. that he felt sure it was something to do with my implant, but he would certainly refer me back to onc as I needed to be completely reassured. The onc, like yours, said he could feel nothing, so I took his finger and placed it on the exact area. He said it probably scar tissue. He then sent me for a scan which proved the locum right… Afterwards I asked onc how would I tell if I found another lump at a later date whether it was implant or not. He said I couldn’t, and should come back and let them look at it.
Have a good weekend - and do try to get an early night!
Yes it was my decision Hi Timetraveller,
yes it was my decision to stop Tamoxifen, the joint pain was getting beyond a joke, I really could not get downstairs on a morning and I clean at the University I was finding it increasingly difficult to manage the stairs (over 700 bedrooms, no lifts) my Onc did tell me though to stay off them to see how the joints are without them and I must admit I do feel alot better, that was when she advised the injections and a gynae appointment.
I probably am being over sensitive and over reacting to everything, I am just going to let things settle and see how I go.
I am still very disappointed with my breast nurse though as she was the most wonderful support, I thought you could still get in contact with them if you had any worries, but after leaving messages she has still not replied at all.
I really need my job as alot of people on the site know about the financial difficulty this horrible disease can land you in, I was finished from my job at the time when I was due to start my rads, I was only employed by an agency but they had just renewed my contract, I was devastated as I really loved the job, Service Desk Analyst, but luckily the local University saw past my illness and have just offered me a permenant contract, the girls I work with have been lovely, also our local pub, the owners are great, they have just given me a few shifts a week and I am loving it behind the bar, it is a brilliant feeling being out in the workforce again.
I know the Onc is more than likely right and they will find anything if it is there,
Thankyou for your reassurance it has really helped, and yes I will have an early night tonight!! and stop this worrying!
You have a good weekend too, take care, Rowlaine