Arm Pain

wintersocks · January 2018

I have begun experiencing a very sharp pain and aching down my arm on the surgery side. It is not there all the time and can go for a while (a month or so) and then it's back. I saw the GP and she said it sounded like a nerve pain. She was sending me to see the oncologist with the possibility of an MRI being ordered she said. However she phoned me today and said firstly he wants me to have a whole load of blood tests first with no mention of an MRI. The pain extends from my shoulder and sometimes into my hand/fingers and has been of fairly recent onset. l am not sure what to think but of course a recurrence is on my mind.

Would be grateful if anyone has had similar or thoughts here .

Thanks as always.

Georgia1 · January 2018

Hi there Wintersocks. If you had surgery in August that does seem a bit unusual, but I too am guessing nerve pain. Are you still doing your stretching exercises? My RO said radiation would make the stiffness worse for awhile and I've certainly found that is right. Maybe nerve pain is the same? I'm not sure that blood tests or an MRI would help and it seems unlikely to be a recurrence tho I am not a doctor. Have you seen a physical therapist?

kcat2013 · January 2018

I had pain, numbness and tingling in my right (surgery) arm that started up about 2 years post surgery. My doctor recommended physical therapy and an MRI but let me choose which order to do them in. I went the physical therapy route first (mainly because I'm cheap and PT is way cheaper than an MRI). I saw a PT who was trained in working with women with a breast cancer history. She was excellent and I saw her for about 8 sessions plus she referred me to another PT in that clinic who does massage therapy and she worked on an area in my shoulder that the muscle was adhered and wasn't moving correctly (or something like that). All my symptoms resolved after that so I didn't need to get the MRI. So I would definitely recommended trying a PT for your pain.

beauz · January 2018

Hi Wintersocks- well done for 5+years out of your BC Dx. I would see an oncologist to rule out recurrence first, then follow kcat's suggestions. Best wishes for you.

Susaine · January 2018

Spa might work fine.

My mom faced pain problems. The herbal products worked fine to her. Now she is fine.

wintersocks · January 2018

kcat

Thanks that's really useful advice. I feel that at 5 years post op it's odd for it to have become painful now; I guess I will just have to wait now for the blood results before any decision to go onto an MRI is made. This oncologist told me that: 'you are at significant risk of dying from your disease'. so i am in no rush to see him.

Beauz - Given that I was told that less than 6 months ago I am not celebrating the five year mark; er+ bc can recur up to 20 years later. Looking at my stats tho I should be thankful I have made it this far

Breast cancer sure keeps on giving...

beauz · January 2018

wintersocks- I read somewhere here when one woman was told that she only had a few months to live by her doctor, she told him that he is not God. She went on living 20+ years to old age. Yay.

wintersocks · January 2018

beauz

Doctor's huh?

wintersocks · February 2018

Update:

blood tests all normal. I had an physical exam by the GP and she said all looks normal. The pain continues on and off and is so sharp it takes my breath away at times.

The GP says she wants me to see the onc and referred me back to him, she mentions he said I might need a bone scan and mentioned in that letter possible mets to the brachial plexus??

So I don't know what to think.

beauz · February 2018

Wintersocks- i am surprised you are still waiting to see your MO. I would have pushed for a sort of scan a long time ago. The pain you described does not sound good to me. Let us know how you are going. ❤

wintersocks · February 2018

I know it doesn't sound good - that's why I went to the GP. I'm afraid this is the NHS in Britain and 'and the pushing for a scan' is only going to get the GP's and medics cross. They work at the pace they work at.

hugz4u · February 2018

wintersocks. Have you thought you might have lymphedema. Go to the lymphedema thread and get educated to see if you have some symptoms. The reason I ask you to explore this is because you had nodes removed and you say pain goes down to hand. You don’t need swelling to have lymphedema.

Because you’ve had nodes out you should educate your self anyway just to be aware because you can get lymphedema with just one node or more out and years after surgery. I wish you well

wintersocks · February 2018

Hi Hugz

I did think about lymphedema , but discounted it because i only have minimal swelling. i will look at the L thread as you suggest, I have been dx with it at the beginning after the mastectomy and got a sleeve but it was very mild. The sleeve was way too tight and annoying.

Thanks for your help and I agree I do need to educate myself a little more about it!

hugz4u · February 2018

yes I have minimal swelling to but do have lymphedema for sure. My arm looks almost normal. It doesn't sound like you got sleeve fitted proper. Yes do come visit the thread and post questions for us. Once you get lymphedema it's hard to get rid of unless it's early stage and one is extremely vigilant caring for themselves. otherwise it stays forever rearing it's ugly head at times. This might be your arm pain problem.

wintersocks · February 2018

I saw The Prof this morning and he told me he did not feel particularly worried. I got a physical exam form him and he said he could not find anything amiss. However, he did go onto say that as I had an 'aggressive cancer' I should get checked out thoroughly. So he has arranged A CT scan in the next 2 weeks or so and then go back and see him to get the results. He asked lots of questions: 'did I have headaches or feel sick/ dizzy?' No to all. He said his first thoughts was 'degenerative changes' in that area or 'wear and tear'. So I wait for a call from the hospital to get abdo/chest and I think he said neck area to be scanned.

Then I came out from under the desk where I was hiding!

bluepearl · February 2018

You can get lymphedema pain with minimal swelling in your arm....in your back as well...lymphadema of the trunk. Also scar tissue can bind a nerve up too. If you look on the internet for pictures of the area, you can see the muscles and which ones can be affected by MANY things....including a rotator cuff tear for example.

SandyAust · March 2018

This happened to me after breast cancer. It was nerve pain in my arm (surgery side)from degenerative changes in my neck. In the end I needed surgery on my cervical spine to relieve the nerve compression. A bit sucky, but better than mets. I was 36 when diagnosed with BC. My arm pain was around at the time of diagnosis but bone scan was clear. When pain got really bad, I had surgery at 45. I am nearly 50.

Your symptoms sound like mine. Best of luck.

gb2115 · March 2018

I get arm pain too, that comes and goes. I think it's muscle tension reacting with the scar tissue from surgery and from radiation. If I rest my arm it goes away by the next morning. But it's a dull ache the entire way down.

wintersocks · March 2018

SandyAust

Our symptoms do sound similar don't they? Very similar. I hope you are continuing to do well; you were very young when dx'd and to have to have surgery too.

gb2115

I sometimes have a dull ache too all the way down It doesn't seem to get any better when rested. The onc asked me what makes it better or worse and I said I didn't know.

Today I had the CT scan with and without contrast. I saw it said neck and thorax under my name on the machine when I decided to have a peek. I like to close my eyes during these procedures as watching what's going on makes me more anxious. So now I just have to wait until the hospital rings me to come back and see the prof.

beauz · March 2018

Hi Wintersocks- hope you get a clear scan result. The contrast fluid is so awful.

bilateralMe · March 2018

I'm greatful for this post. I am only 8 weeks post op and was told by my physical therapist that the nerve pain could last up to a year or more because of the number of surgeries I've had in such a small period of time. I was already starting to think that the pains I'm still having our abnormal. I have to learn to take my time and acknowledge that things will never be the same.

justamy · March 2018

I have very similar pain. I know that I have nerve pain from chemo. It has actually gotten worse in the past few months (I am 3 years out). My hands go lose sensation with pins and needles during the day. When I first wake up, the burning pain coupled with a number feeling are almost unbearable. Sometimes the pain goes up my arms.I take 300mg of Gabepentin 3x a day. I think that's why it hurts less in the daytime. I also am having pain near or on my collar bone. My oncologist thinks it's because of implants but I'm going to push for a scan. Hope that all goes well for you and you get good answers!

bluepearl · March 2018

All I can add is try supplemental magnesium, either as a transdermal or pill. Chemo and some of the meds heavily deplete magnesium (and stress) so regardless, get more of it.

wintersocks · March 2018

Thanks all

seems that this arm pain is pretty common, I am back at the hospital Tuesday morning to get the results of the CT scan. The pain seems to have retreated again but I did get a searing pain in my wrist that woke me the other night.

It's so wearing to keep going through tests for one thing or another. I just get to feeling so tired of it all and that's because I think that pre bc my health was never so good. Sorry just feeling a little down today.

Falconer · March 2018

wintersocks I am so with you; you're not alone!!

SandyAust · March 2018

Hi Wintersocks.

I am sorry you are going through this but I am glad to see your update. The wrist pain also sounds like referred pain from your neck. I know it would sound bizarre under any other circumstances but I am hoping for cervical radiculopathy for you (pain from a compressed nerve). It doesn't necessarily mean surgery, it can diagnosed and relieved by a nerve root injection of steroids and local anesthetic. It can then in some cases be treated with physiotherapy. I will keep my fingers-crossed for you.

Take care,

Sandy

P. S. I also understand the feeling down. One can become sick of being sick

wintersocks · March 2018

SandyAust and Falcolner

Saw the registrar who was a very pleasant chap, He told me almost straight away that there was no change from the previous CT scan and so it was 'clear;. He then had to take a phone call from a 'acute oncology case' who he was trying to find a bed for (NHS very squeezed) at the present. so I had to wait til he sorted that. Eventually he said he would ask the professor if he wanted additional imaging so he disappeared and on his return told me that he had requested I have an MRI. He told me that he did not think it was a cancer and if it was it was 'very small', He asked me again about the nature of the pain and my description was 'along the nerve pathway' which he said was typical of something bothering the nerve . He said to continue with Amyltriptyline (sp?) even if I do not have the pain. So I am not sure what to think??

I am a bit surprised a MRI was requested and wondered why not do that in the first place as it is more detailed. So that's next.

And then I went to my friends and had some gin and Prosecco (in the evening; not straight after the appointment) Thanks to everyone here for all the kind thoughts for me. It really means a lot.

SandyAust · March 2018

Hi Wintersocks. I think the CT is better for looking at the bones whereas the MRI is gold standard for looking fir nerve compression. If it does turn out to be a nerve compressed in your neck I am happy to chat with you as I have been through the same thing. All the best. Sand

Falconer · March 2018

WS, please let us know what the MRI results show! 🤞🏼

SandyAust · April 2018

Hi Wintersocks,

I hope you are going ok. I pop in every now and then to see if you have any news. Anyway take care.

Sand

wintersocks · April 2018

Hi Sand/Falconer

My MRI was delayed cos I had an op to reduce the left breast and it's still too big! (but that's another story). The hospital unexpectedly called me for the op and as I was waiting for nearly 2 years I thought I'd better get in done.

So the MRI is now scheduled for the 8th May, I was told to keep taking the amyltriptolene (sp) meanwhile until I go back for the results.

Thanks for thinking of me and I hope your both well (as can be)

Arm Pain

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