Chondrosarcoma diagnosus

Hi everyone

So glad I've found this group..

I was finally diagnosed with bone cancer in my shoulder and right humerus on 21st September 2016.

Before Christmas I had 3 cycles of chemo ( cisplatin and doxobricin). On 3rd Jan 2017 I had large tumour removed and had a complete shoulder replacement and most of the humerus by Rob Pollock at Stanmore.

Saw prof Whelan at uclh today.  Lab shows tumour was grade 3 Chondrosarcoma. Scan of chest shows it hadn't spread. I need 2 more cycles of chemo then they want to do a month of daily radiotherapy. 

I've very mixed emotions right now. I'm over the moon it hasn't spread but worried about the future 

I'm currently in uclh ward as can't look after myself in the mcmillan hotel with a backpack and no use if right arm.

Anyone else out there similar to me?

Thankyou

Nikki

  • hi Nikki

    welcome to the online community

    there are a couple of people who have posted recently to this group who do seem similar to you, let me try and attract their attention

    FormerMember  and may be in a position to compare notes ?

    hugs to all

    Carolyn

    x

     real life success stories to remind you that people do survive breast cancer

    https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

    Dr Peter Harvey

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

     

  • Hi Nikki, my wife's in the soft tissue sarcoma section so not so similar to you but just thought I would highlight another useful resource in sarcoma uk.

    <<hugs>>

    Steve

  • FormerMember
    FormerMember

    Hi Nikki,

    Whilst I havent had Chondrosarcoma, I am under Prof Whelan and can say your in the safest hands possible, also UCLH is the best around for Cancer Treatment.

    I also had approx. a month of daily radiotheraphy, its pretty hard going but managable, I liken it to how you feel if you get sun stroke.

    Its hard not to worry about the future, is was 17 when I was first diagnosed with Ewings Sarcoma after Operations, Chemo, Radio and Stem Cell Treatment I thought I was clear but it returned at age 23 and 29. Two years later im now back to normal and clear but always get worried if I have a pain in my joints or lingering cough (had it in my lungs).

    My only advice is try to live one day at a time and not worry about the future, the end of the day you dont know what will happen down the road so stay as healthy as you can and not worry.

    I hope all your treatment goes well, and your not having to go through this on your own.

    I highly recommend going to see the girls at the Macmillan Centre in the UCLH Macmillan Cancer Centre if you have any questions or just want to vent, its also a quite place to have a cup of tea if you want to be on your own.

    Jamie

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Nikii,

    Sorry to hear you are going through this.

    I was recently diagnosed with chondrosarcoma on my first rib.

    I am going to have a surgery. I want to postpone it till May but not sure what the doctors would advise.

    I am absolutely devastated but at the same time in denial of the seriousness of the situation.

    And the thought of chemo and radiotherapy terrifies me.


    I wish I could somehow get in touch with you.


    Hugs,

    Vicki 

  • Hi Vicki

    i was terrified of chemotherapy , i was sure it was going to kill me and was pleasantly surprised when it didn't 

    do you know if you definitely have chemo after surgery or does it depend on the post surgery results ?

    Hugs

    Carolyn

     real life success stories to remind you that people do survive breast cancer

    https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

    Dr Peter Harvey

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

     

  • FormerMember
    FormerMember in reply to Carolyn28

    Hi Carolyn,

    It will depend on the results after surgery. Apparently it's a very slow growing tumor. I've had it for 3 years and it hasn't got much bigger.

    But knowing me I'll probably just refuse chemo anyway. 

    I thought I'd never have to face this situation as I am still young and I was hoping that by the time I'm old and prone to cancer they would have found out how to treat it.

    Unfortunately we are far from it.


    Could you please share how long you had chemo for and how it affected you.


    Vicki

    Xx

  • Thanku everyone. 

    It's great to find you all.

    My first chemo cycle was full whack of both cisplatin and doxorubicin . It made me ill and I ended up in hospital nutripeenic.  They reduced my dosage and that really helped with the next 2 cycles. 

    Surgery was hard but after a 3 days I went home. The shoulder/humerus replacement is in my right arm and I'm right handed. That's a pain but u get by. Got to get a steering adaptor for my car.

    Results just in is that kidney function is good so will start my 3 days continuous chemo today in uclh.

    I'm a worrier over nothing except health and I ask too many questions.  My downfall is I've found out some horrible stats.so follow ups later on will be sickening.  In between these those I'm gonna try and stay positive. You have to don't u, when you've got kids. 

    So glad to have found u all

    Thankyou xx

  • FormerMember
    FormerMember in reply to Nixie

    Hello ,

    My father was also diagnosed with stage 2 chondrosarcoma (pelvic area). He is now into some chemo treatment process, he did 3 cycles then the doctors decided that the treatment isn't working, so they changed the chemo drugs now.

    What type of chondrosarcoma were you diagnosed with? (my father has the conventional subtype, and from what I read online this subtype doesn't respond really well to chemo treatments).

    In your specific case, did the chemo treatment reduce the tumor size?

    Thank you :)

  • Hi guys.

    My Chondrosarcoma was called differentiated sarcoma.  Only explanation for this is that it started at low grade and then ended up at grade 3 before I realised something was very wrong 

    Chemo didn't reduce the tumour but after hysterectomy one session I could do so much more with my arm than I could. The lump did feel smaller.  I could lay on my arm and lift it.  Both were things I couldn't do up to chemo do prof Whelan said in terms of chemo not working,  it did do that. I think the chemo stopped it in its tracks as didn't grow any bigger.

    2 more chemos left.  This time of just Doxorubicin.  So at least won't be having to stay in London for treatment.  Can come home with it. And District nurses come home and can disconnect it 2 days later .

    My advice about putting treatment off is NOT TO. Those months cld make the difference between it getting to higher grade  and don't be scared of chemo.  It's not pleasant but completely do-able. I had a holiday to gran canaria booked the month after my diagnosis. Obviously cancelled it, but got a refund.

    The sarcoma team at uclh are amazing.  I do feel in great hands .  And Macmillan's are equally brilliant.  Put yourself in their hands. They are the professionals.


    Best of luck everyone x

  • Hi nikki, 

    Just found your post while searching, just wondering how things have gone for you, 

    I've also been diagnosed with chondrosarcoma to the right humerus and am due surgery on Dec 1st, they are removing about 12cm and fitting a reverse shoulder replacement, if you have got any advise of how it all went for you and how you're coping and getting on with day to day things, many thanks for taking the time to read this all the best Dave