It’s been a while since I wrote about my physical problems coz there haven’t really been that many and things were looking up.
I have an on going knee problem and have been to docs several times and finally got a referal for physio but not for another 3-4 wks. In the mean time, the knee pain remains, I have lower leg pain and weakness and pain in both ankles.
Spoke to hospital today and they have brought my January app forward to next week. Obviously I am worried it may be bone mets but fear I will get fobbed off again. My hosp will not give me any scans even though I had lymph node involvement.
I feel 80 not fifty. You should see how I get out of the chair or the car.
Does anyone know the chances of me getting mets after having chemo ? I jsut feel so c**p at present, though look wonderful as everyone keeps telling me (by the way, I don’t agree with this, I’m too fat!)
I am on Tamoxifen too but been on this for 6 mths with much less pain than when I was on arimidex. Had the current pain for a couple of weeks.
Hi Rebecca
This refusing to give further tests bothers me as I just feel so ill informed. If they laid the cards on the table and said you don’t need scan x because you don’t have indicators Y, I would maybe understand. I Just feel it’s down to money, and if I had it, I would pay for my own scans!
I too have very tender areas in my ribs, and my tumour was close to the chest wall.
Where do you live? I go to The Cumberland Infirmary, Carlilse.
Im from Whitehaven and got to Carlisle hospital - I worry all the time about my back pain and Im sure Onc wont do it but have been onto bcn and I think she might push it - so many other areas give it at the start that it does worry me and I do go on about it a lot to them
x
Hi Irene,
I have mets in two places in my spine which don’t cause me pain but just stiffness at the moment.
I have also had a tender spot on my ribs since April which hasn’t showed up on my bone scans as cancer.
I do have lots of aches and pains that are just from having had chemo.
So bone pain doesn’t always mean that you have mets but it’s always better to get these pains checked out just in case.
Alli x
Hi Irene
Isnt it awful this constant worry and pain.
I was talking to a friend of mine who hasnt had cancer but has the most awful back pain and is on high strength pain kilers. Now if that was us what would we immediately think?
Then you get Alli who does have secondaries and my friend just Dx with bone mets not in that much pain at all. then i met a lady whilst having my bone scan a few weeks back and poor love her pelvis had crumbled with bone mets, she said she literally got up one day and couldn’t stand. She was using a zimmer.
You also have the worry of your hosp not doing tests BUT i have the worry of too many scans maybe. You can’t win can you?
I get results on Friday, but i am more concerned about pain under my arm mastectomy side.
One of the things that has helped me though is to think, if i have got or am going to get secondaries there is absolutely nothing i can do about it. I am trying to not worry too much as the quality of life then is crap, not ofcourse successful alot of the time though.
Take Care kid
Rx
Yes Ruth you are absolutly right and part of me says leave it and another part says get it checked. Ali, your advice was most useful thankyou. If I had to describe my condition I would say an aching stiffness rather than extreme pain. It could be the Tamoxifen I suppose.
Nothing has improved, infact I am developing more areas for concern but my friend who has had BC thinks it’s the weather! But she’s ok, she hasn’t had any side affects from arrimidex or any aches or pains.
My reflexologist had a feel of my feet and legs and thinks it is poss arthritus and/or a trapped nerve, but she wants me to keep my appointment at hosp which I will this coming fri 28th.
Really sorry you have this pain and the worry that goes with it - I’m glad you’re being seen earlier because they’re taking seriously - not only what you fear, but the need to reassure as soon as possible? I hope it isn’t mets for you - I know a woman 1 year post bc, who had similar terrible pain in her knee which affected her ability to walk, and was completely convinced that it was bone mets - but it turned out to be something else and it has gradually got better (they still don’t know completely what, but it def isn’t). And so I hope, with you… fingers crossed. If you get it checked and it’s one of the many other things it could be, then your mind will be put at rest or at least you’re not dealing with mets.
I have always had a lot of aches and pains in my chest area following all the treatments - (not involved in my current recurrence.)
Just thought I would update. Saw doc today, she gave me a thorough exam and has referred me for a bone scan and taken bloods. She is pretty sure it’s not mets, but said I had absolutly done the right thing in going to see her. She thinks it is likely to be arthritus but wasn’t too forthcoming with an answer to that , I suppose she will want me to go through my GP for treatment for that. In the mean time, I will be seeing a physio soon about the ongoing knee prob, and my reflexologist for a deep tissue massage with traction next week. Fingers crossed this will take some pressure off my joints.
Hi Irene …I saw the bone spec at the ROH Birmingham on thursday he too has referred me for a bone scan as he cannot attribute my aches to anything else my breast doc wouldnt let me have one as I had one when I was dx last year there was a little osteo summit but they said not to be concerned I dont think that it is mets ,but i would really like to get to the bottom of the pain xxx Let me know how you go xxxxxx
Hi Maz. Yes I know how you feel, that was why I said if it’s not mets, what then? She didn’t want to say. I think arthritus can be very difficult to control. I think mine may have been kick started by the arimidex and/or tamoxifen. I am 50 but feel 80, no exageration.
I’ll let you know what happens in about 2 weeks time. Take care yourself.
Just to feed back. Missed my bone scan coz still unwell with cough/flu. Have been told to phone and rearrange when cold has gone (still not gone so haven’t yet). In the mean time my bloods came back clear, and the leg pain has lessened since I had some physio and deep muscle massage on my knee. So will ring hosp tomorrow and ask for advice on wether to actually have the bone scan. Just thinking as it’s only 8 mths since my last one too. Not feeling as panicky now either.