Bone cancer

A place for people affected by primary bone cancer (including osteosarcoma, Ewing's sarcoma and chondrosarcoma) to support one another, ask questions, and share their experiences.

Chondrasarcoma of the humerus. Recent surgery.

ClareRB
Posted by

Hi there

Two weeks ago I had surgery on my right shoulder (humerus) to remove a grade 1 chondrasarcoma legion.

At the time I was advised to have a nerve block to help with the pain. The nerve block was suppose to be concentrated on my shoulder and upper arm but as I woke up I discovered my whole arm and hand completely numb. Two weeks later I feel my shoulder is healing well and i'm grateful for the care i've received. 

My concern however, is that although i've regained most the feeling in my hand and shoulder, i am still unable to lift my arm from my elbow in any way. This was not suppose to be the case and both the surgeon and anaesthetist don't know whats causing my dead arm. I also have constant pressure and pins and needles in my thumb.

My fear is that the feeling and motor skills won't come back and wondered if anyone had experience a similar problem.

Thank you. 

Nixie
Posted by

Hi Clare

I had dedifferebtiated chondrosarcoma (ehich is sbouve a grade 3) which was removed in Jan 2017.  I too had it in my right shoulder.

As my sarcoma was so advanced and aggressive I had a shoulder and humerous replacement. Lots of chemo then followed up by 30 days of radiotherapy. As I only had clear margins of half a mm I also had 4 if my 5 muscles in my shoulder removed.

I have terrible peripheral neuropathy in my hands and feet and cannot lift my arm but my surgeons told me that would be the case before I had the op. But I was just pleaded to he keeping my arm.

I go swimming alot as I have full range of movement there. May I suggest you try this. It may help your arm get movement back.

I am 18 mths clear now and very grateful as beating the odds.

You ate the first petson I have heard from who has had nearly the same as me. Pleased to meet you!

Haha

Nikki

ClareRB
Posted by

Hi Nikki

Thank you so much for replying. 

I'm so sorry to hear how much you've been through and the pains you still have, but also glad to hear you've made it through to the other side. Do you know, I hadn't even thought about how beneficial swimming could be, but of course it will be. Once my stitches have fully healed and i've improved my method of one arm dressing i'll be sure to go. Thank you so much for suggesting it. 

I really hope your hand and foot pain becomes more manageable over time. Thank you so much again for replying with great advice, everything is so unknown.

It's lovely to meet you too, and i'm wishing you all the best for your future.


Take care,

Clare.

Nixie
Posted by

Hi Clare,

You are more than welcome.

The peripheral neuropathy won't get nuch better. It's a side effect of the chemo. It's something you learn to manage.

I've adapted to one hand dressing and undressing, and washing. I'm just trying to get round hair drying which is really difficult as hair us just long enough now to do that.

The gym is good to go to too. Tell them about your arm and they will help you with exercises that help you.


It's really great to hear you caught it so early. Well done you.


Best of luck. If there's anything else I can give u my pearls of wisdom about. Haha. Just text.


All the best

Nikki

Parker18
Posted by

Hi,

this will be the first time I’ve ever spoken to 2 people that have had similar or exactly the same operation as me. 

I am 37 now. When I was 13, I was diagnosed with Ewing’s sarcoma in my upper left humorous. I was rushed for an operation and had a full metal shoulder and humorous replacement. About an inch above my elbow. 

If your surgery is similar to mine your hospital should be giving you hydrotherapy Physio. Basically a really warm swimming pool that helps you move your arm and build strength by water resistance. 

You mentioned a limited number number of muscles left over from the surgery. I think I have half a bicep, half a tricep and very small amount and I mean small amount of routery cuff. I have very limited movement. I can’t physically take my arm past 90degrees. But I can use both arms to dress myself and carry out small task. 

With work you will get there but you need the proper Physio. 

Does my operation sound similar to yours? 

Craig

Nixie
Posted by

Hi Craig.

Yes, your op sounds almost identical except mine us in the right arm. I was told I had 1 muscle left out if the 5, and that's down the front. I can get about 45 per cent up at a push. They said before the op that I'd be lucky if I can get 90 per cent but I can only get that in the swimming pool. So I do alot of swimming and aqua aerobics.

My surgeon recently told me that dye to all the radio therapy I've had is why everything has stiffened up. So I've now come to accept that.

Sleroibg is difficult. Can't get comfy etc. I used to take a high dose if codeine with paracetamol. That really helped but gave stopped taking them now as I think my body was starting to get used to it. So now I have very broken nights.

I like deep tissue massages. Got 1 tomorrow. They help to sort out all the tense muscles in my back because they are really painful.

My cancer was dedifferebtiated chrondosarcoma.. really high grade by the time I did something about it. I'm 50 now and am 18 months clear.

I'm in Essex.   where are you?

Nikki

Parker18
Posted by

Hi Nikki,

I am near Leeds. 

As you’ve had the majority of your muscles removed what does it look like? 

I am so self conscious of my body and how I look. I have no muscle in the back or front of the shoulder. Just small bicep and tricep. It’s also 3cm shorter than my other arm as they under estimated when I was 13 how much I’d grow. So I have a skinny 13 year olds arm on a 36 year olds body. 

I never take my top off in public, I don’t go swimming, can’t bring myself to go to the gym. Holidays are so hard as I keep covered up. 

If your arm shoulder looks similar to mine how do you get past it and go swimming etc. I really admire you for doing this. I just can’t get this body conscious issue out of my head. 

Craig

Parker18
Posted by

Also one thing that help my pain was a lot of deep tissue massages. Probably 2 a week for 6 weeks. It seemed to break up the scar tissue meaning I didn’t need painkillers anymore. 

It hurt a lot during it but it was so worth it. 

Nixie
Posted by

Hi Craig,

I'm sorry to read what you say about being embarrassed about how you've been keft after the op. Have you considered counselling? You need to love yourself again. You won a battle. You wouldn't be here today without this intervention.. if people ask about your arm you just explain what you went thru and people would admire you. People in wheelchairs hace skinny legs but you don't bar an eyelid to them. Disability is very common these days. You're a very brave man. Be proud if your battle scars.

As my op was only 18mths ago my arm is still the same length but I have a large scar all down the front. It bulges out all round the arm where the metal meets the bone which is half way down the numerous. I have a lump at the front of the shoulder which is scar tissue. My massage tiday works on my back and arm plus she helps with my hand as I have an arthritic pain in all the joints.

I think I may have to go back on the codeine at night. It was getting light when I finally got off to sleep this morning. It just makes me constipated but at least I'm sleeping.

Anyway, I'm off to aqua aerobics now. Be proud of being brave and that you are still here today.  I'm still trying to get used to dark curly short hair after having very long straight blonde hair. Haha.

Take care

Nikki

ClareRB
Posted by

Hi Craig and Nikki

It sounds like you've both been through a very similar trauma so its great you can share your advice, wisdom and worries. I'm so grateful for the advice offered, but also, without wanting to sound patronising or even pitying, you have both really inspired me to try and stay positive and actually grateful for how much I do have. I've found it too easy to fall down the dark path of feeling sorry for myself. I still can't move my arm and as yet we're not sure why, but i'm sure with physio (when I eventually get some) swimming and some reluctant trips to the gym, i'll get there. 

Craig, I eco what Nikki said about your poor body image, people will see beyond that, the ones that know you already do. They'll see you as a whole person if they are worth getting to know. I would be scared as you are, but maybe If you could get someone you trust to take those steps with you to maybe eventually go swimming, maybe one day thew caution to the wind and say who cares what others think, its your life to enjoy to its fullness. You may not feel attractive, but really, attractiveness comes from confidence, or at least pretending to be and the person you are.

You went through such a massive trauma right on the cusp of adolescence, right when appearance feels like everything. It's probably dominated everything. If you haven't had councelling, maybe you should consider it, or have some more. You deserve to enjoy your life. Like Nikki said, you are strong, you survived, you are inspiring without even knowing it, you should never feel ashamed.

Nikki, you sound ace and I bet you rock that curly hair.

Sorry for my rant. Love to you both.

Clare.

Nixie
Posted by

Hey Clare

You said that brilliantly. It was beautiful.

We are survivors.. ....winners. that's how I view it now.

I hold my chin up now and tell anyone who wants to listen. You need to get to that stage Craig.  You fought for your life. Enjoy it.

Clare You too sound awesome and if like me you end up not having much use of your arm you will adapt as I have. Because we are survivors and now deserve to live a happy life with our families.

We rock!

Love to you both

Nikki

Parker18
Posted by

Hi Nikki,

i have had had many counselling sessions. They haven’t altered my perseption of my self.

to give you an idea my shoulder looks like someone has taken an ice cream scoop to remove most of my muscle at the back. I hear what your saying and wish I could live my life like this  but for some reason I can’t get past it  

I found massage sage really helped with nerve pain. 

Parker18
Posted by

Glad you feel positive. 

The movement should come. They told me that I would have to take a desk job when I was older because of my shoulder. I became a joiner for 10 years. This came to an end due to breaking the none breakable metal shoulder ball and socket 5 times. My surgeon told me I need to change career. 

So you see with limited movement/muscle you can still can become strong within your limited range. 

Thank you again for your kind words. But as I said to Nikki, it seems deep seated and your probably right about the age has something to do with it. 

Hope you get physio and hydrotherapy soon. 

Nixie
Posted by

Hey Craig

It saddens me to read ur post.

How about going back to your surgeon and asking to be referred to plastics. Maybe they cld help you. Especially when you tell them how ur confidence is low because of it.

Nikki