Parosteal Osteosarcoma

Hi Daffodil69 and welcome to the Online Community but I am sorry to hear about your diagnoses but good to hear treatment has went well.

Navigating the cancer journey can be such a stressful and challenging time but getting support from others who are dealing with the ‘exact same' cancer type can help a lot.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend consider joining and posting in our supportive Bone cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To join a group click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can put up your own post and introduce yourself to the group by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post. You can also scroll through other members posts and click “Reply” to get involved.

I did a site word search for Parosteal Osteosarcoma but did not get any hits.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.

Do get back to me if you need further help navigating the community.

Thank you for your message and info. 

Hi there, my daughter had parosteal osteosarcoma as well. I would love to chat with you?

Hi Jamie thank you for your message. I am sorry to hear that your daughter had Parosteal osteosarcoma too. How is she getting on? 

Thank you so much for replying! Her name is Kennedy, she just turned 21 last month! She was diagnosed in June of last year. She had a hemi cortical resection in November, but there were positive margins so she had a femoral distal cut out with a total Knee replacement on January 15. The rehab has definitely been long and hard. How are you doing? How long ago was your diagnosis? Where are you at? We are in Montana USA.

Nice to hear back from you I’m 56. I live in Solihull, England with my husband and 16 year old son. I’m doing well thanks. I was diagnosed in Nov 22 and  I had the tumour removed Jan 23 . Then in Dec 23 I had to have another operation as it hadn’t healed. I’m waiting on results of CT scan to see whether I need further treatment as it hasn’t worked but I’m hoping we can just leave it as not keen on further surgery.  I’m hoping Kennedy’s recovery keeps improving and that she is able to enjoy all the normal activities a 21 year old does. I know I have found it very frustrating at times not being able do everything I could do before but with physio and hydro therapy i can do a lot more.

I'll send you a private message on here :)