I was diagnosed with BC 6 years ago, original site was on right hand side, aggressive and all lymph nodes were affected.
Had double mastectomy, chemo, rads, then had ovarian cancer (BC seconaries).
In Sept last year, I was ‘signed off’ at the hospital - I have not seen my Consultant for 3 years, always a locum. At my last 2 appoitntments, I have mentioned the ache I have in my right arm, but have always been met with a shrug of the shoulders, and been told, well, what can you expect - lots of surgery, nerve damage etc.,
That has now made me reluctant to go back to docs again, but I have had really bad bone pain (the only way I can describe it) for several weeks now. It is on the right hand side, and is in my elbow and shoulder. I cannot lift anything heavier than a cup of coffee - and I use both hands to do that - and it wakes me up several times a night, when I roll over onto that side.
Since I was diagnosed, I have seen my GP 4 times (in 6 years). I mentioned this pain to him the last time I saw him 4 weeks ago (I had a chest infection), and he brushed it off, actually saying, ‘so, you are feeling paranoid? perfectly natural!’
I have seen him 4 times since my diagnosis, I have only ever attended appointments as required for follow up at the hospital, but I am reluctant to see GP again about the pain - I hate to feel as though I am a ‘drama queen’, but I have a niggle that this is not good.
I just wondered if anyone else has had the same sort of pain, and what other possible reasons there may be for it, before I make a fool of myself:)
Hi there, if your pain has been ongoing for a while, and you cannot lift a cup easily and it keeps you up at night when you roll over… then you do need to investigate further. There are other non-BC reasons for arm and shoulder pains. I would suggest you to go back to your gp. Tell him/her that it wakes you up at night, and that it worries you. Don’t feel that you are a drama queen - you don’t sound like one to me .
Of course you are not a ‘drama queen’. I wonder if you still have a BCN at your clinic? If so a chat with her may help she will be able to help with an appt.( I know I have the most marvellous BCN and this is not neccesarily the case for everyone) Certainly if you are having consistent pain and probs with that side you need some answers.
Are you on AI which can cause joint problems? I do hope you can get some resolution to your worries soon J xxx
As well as the support you are receiving here please do give the BCC helpline a call and talk this through with a member of staff there. Here you can share your concerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Hi Haswel,
Just wanted to try an give you some support. It sounds like your gp is being very insensitive of course you are paranoid an after what youv been through its understandable!!! but u deserve 2 b listened 2. Iv just recently been dx with bc and iv had a tenderness under my breast since way b4 i found my lump and i admit i became obsessed wit this. My surgeon totally dismissed it. When i went to mention it she grabbed both my hands and said “ther is nothin ther” Now she is probly right, in fact i pray that shes rite. but that has not stopped me worrying about that tenderness and eventually some1 did listen and im waitin on a ct scan b4 i start my chemo. It would have helped if this had of been done earlier because my chemo is being delayed till this scan is done, an it has caused me many sleepless nights over the past few weeks. What im trying to say is ‘the squeaking wheel will always get oiled’ and you should not feel bad or foolish for voiceing you concerns. Another thing i find very helpful is if im not feelin strong enough (constantly going on IS hard work) i get a member of my family to advocate for me do u know some one who could b with you on your next appointment some1 who would push the issue for you.and i was also wondering Do u hav just the one gp in your surgery? I know il only ask for an appointmen with the gp im most comfortable with(the one that gives me what i want.lol) and its also worth mentioning that my sister had breast cancer 7 years ago and has had a lot of problems recently with pain/weakness in her arm.which she was paranoid about. Like you they wher constantly sayin it was because of the surgery but eventually she had it properly looked at and they found nothing thank god. but now she has peace of mind cause the not knowing is torture.
Iwish u all the best of luck
xxx Monicaxxx
Hi Haswel
I agree with monarose, take someone you trust to go with you to your GP, write down your symptons and concerns beforehand and explain that your quality of life and mental health are being affected by them. I also have constant pain in right shoulder, arm and burning/aching hands(bilateral mx and secondaries in liver) My bone scan was clear and xrays showed only wear and tear so both onc and GP have put it down to se of letrozole and the nerve damage from the surgery/anx clearance. I now have regular physio which helps and have been prescribed Gabapentin for peripheral neuropathic pain. Most GP’s have a McMillan nurse in the practice, pehaps you could talk to her first. Wishing you good luck and hope to see here that you have a solution soon x
I agre with Monica too, take someone with you, preferably someone a little feisty who won’t leave until they give you what you want! I have read lots of thins on the Internet that have caused me many a sleepless night and have stopped doing that now as I realise not every ache and pain is due to the bc!on laws given sound advice at the beginnonly to only listen to my consultant and my bc nurse and that’s what I do! Do you still have bc nurse as if you o then she would definitely be the person to speak to as she can help with this.I wish you well and hope that it turns out to be nothin troublesome xx
Hi Haswell
My mx was in June 2011, and during cold months my hands would go white, tingling and painful until the blood flowed back into fingertips, I sufffered with this for a number of years, it’s called Raynauds syndrome, what I’m getting at is, after my chemo treatments and during, these symtoms were really bad, hands felt as if electric shocks were being put on them, numbness and severe pain in trying to move them, I like you, told my GP and oncologist at every follow-up appt. eventually almost a year after treatment I was sent for nerve conduction tests which showed I had severe carpal tunnel in both hands. While all this was happenening I was suffering with pain in my shoulder, which again caused me to wake up sometimes for two hours before I finally dropped off to sleep again. The pain doesn’t seem so bad during the day when I’m moving around, but enough is enough, and I get so fed up when I’m told it’s down to chemo and what I’ve gone through, I kept on saying I wanted further investigations, and eventually went for an MRI scan on neck and shoulder which showed partial thickness tear of fibres to the tendon, it’s not completely resolved but an orthopaedic surgeon who was checking my hands before puttiing me forward for surgery said it’s possible a cortisone injection could give relief possibly for a time. I am now due to see a bone specialist in a couple of weeks re shoulder, everything is happening this month, op for one hand is booked, appts, follow up with oncologist, pre-assessment for reconstruction op in April, this to me is my priority…sorry for going on, but as others have said, keep pushing to get something sorted, I understand your pain and your drs shouldn’t just dismiss you saying your paranoid, again try and take someone with you who has seen how low, tired and probably such a changed person to who you were, it must be put across strongly to them and maybe something will be done for you, I really do hope you get results soon…good luck…sorry I’ve gone on somewhat, but hope it may be of help… xxxx
Hi interesting,you say you are suffering from shoulder pain, as I am too. I had chemo march 12 to July, then mx the. Rads, all finished December. I felt fine u til I decided to go back to the gym in jan…now I have a shoulder ache, but on the opposite side to the mx, I keep wondering whether its cause its the arm that was pumped full of chemo as I did have cording in my elbow there. It’s so bloody scary this crap disease, it makes me feel like I’m turning into a hypercondreact!! As I hardly ever used to feel and need a doc.
I just wanted to say thank you to everyone who has replied - it has been wonderful to read your responses.
I will make an appointment with my GP tomorrow, just to kick things off. I have always been so strong and healthy - even during my cancer treatment which is now 6 years past, and I never had any symptoms before, or during the treatment, so everything came as a suprise!
The pain I have is nothing like anything you have descrribed. It is bone ache in my elbow and shoulder. It hurts when i straighten my arm, or when I try to make a fist. I cannot pick up a cup of coffee without using both hands, much less hump things around the garden, like I was trying to do today, and it is painful, aching all the time, especially at night.
Ah, well, I will see the doc and see where we go from here , but thank you so much for your support, it really is appreciated:)
Haswell, someone else has mentioned carpal tunnel and it reminded me that my symptoms (many many years before BC dx and treatment!) were similar. I would wake at night with shooting pains - like electric shocks - in my right arm. My forearm, elbow and shoulder ached a lot of the time and I couldn’t grip anything properly. Is that why you need two hands to lift your coffee? Is it pain or weakness?
My GP sent me for neck xrays because he thought it was osteoporosis or a trapped nerve in my neck. They found neither. He gave me a splint to wear on my affected hand as much as possible (you see people with arthritis wearing them - a sort of fingerless glove with a metal plate inside that goes from palm to past your wrist, it fastens with velcro) When this didn’t help much, I was sent to see a consultant who told me I was suffering form Carpal Tunnel Syndrome.
To cut a long story short - I eventually had the op, as a day patient, under local anaesthetic, and all symptoms stopped! This is a very common condition in ladies of a certain age. It sounds to me that this MIGHT be what you have. Here is a link to the NHS info about it, just in case it is of any use to you.
Carpal tunnel syndrome - NHS
My first thought on reading your post was “Change GP” - you need one who realises that you are not a hypochondriac. I have several GPs at my local practise and there are a couple that I won’t see because they assume everyone is a malingerer! Up until my bc dx, I think I visited my GP, on average, once in every 5 or 6 years!
I hope, whatever it is, that you get it sorted out.
Thanks JCJ Nope, never had any shooting pains, just all in elbow and shoulder.
I rang this morning to make an appointment with Doc - the 19th March is the earliest appointment I can get with the GP who ‘specialises’ with the practice cancer patients, a week today with any other doctor in the practice, so will have to just put up with it for another week:(
I never had a BCN unfortunately and just don’t have anyone else to turn to for advice. I am feeling really worn down and tired out at the moment - but thank you for all suggestions.
Be very wary of GPs, they are exactly that, General Practitioners. I was told by my Breast care nurse to apply the 2 week rule, if same thing for 2 weeks and no obvious explanation, then call.
You should call your Breast Care Nurses, they are open to you FOR LIFE now.
It may be something and nothing, but you need this checking. Dont panic but some tumours press on nerves and make parts of body go weird. I have been diganosed with lung mets, had niggling shoulder pain i put down to working in a shop… until i got short of breath… got sent for xrays, I have 2 tumours there. I did not know back pain could be that, I also started with numbness of arm but once fluid drained off lungs that went.
Get it checked out if not just to eliminate it, a quick xray should suffice. Best of wishes xx
Hi Haswell
Me too. Have had lots pain right shoulder, arm, elbow. Thought it was bone secs, esp when I got recurrence in axilla, but then thought it was brachial plexopathy (!!), then I had full axillary clearance and they (the surgoen) obviously cut some nerve irrevertribly (!) and the pain has gone… only to be replaced by cording pain. Also bone scan didn’t show mets.
I would say think weird nerve damage rather than mets at this stage…also its less scary and probably more likely.
Fingers crossed
hugs
maggy
hi Haswell
Just wanted to say well done for making that appointment. At least wen you go for the appointment its to discuss the pain in your arm not just something your mentioning as an after thought.You poor thing your worn out. I am thinking of you that you get some answers.xxx
Monicaxxxx
.
Nope, never had any shooting pains, just all in elbow and shoulder.
At least wen you go for the appointment its to discuss the pain in your arm not just something your mentioning as an after thought.You poor thing your worn out. I am thinking of you that you get some answers.xxx