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About this group

About this group

Posted by AgnesK on Apr 1, 2011 11:36 am

This group is for those who have a rare cancer, who where diagnosed with a cancer that doesn't usually affect people your age or just consider themselves odd-balls in life. I fit into all these groups. I was diagnosed with metastatic gastric cancer at age 35. Not only is this cancer relatively rare, it usually affects those 70 and older and predominantly of Asian decent. I am neither of these. There are no support groups for me. There are no national fundraising campaigns for this cancer. Hopefully this group will allow folks like me to connect and support each other.

Re: About this group

Posted by Mommalee on Oct 1, 2020 8:23 am

Is this the only discussion or post about rare cancers? That isn't very helpful, is it? I have undifferentiated pleiomorphic sarcoma, which had some other name that I can't remember. It was a large lump, over 15 cm/ 7 inches in diameter which started as a thumb sized lump when the GP first looked at it for me in February. By April it was the size of a softball. By the time radition started in June, it was the size of a nerf football. We didnt really shrink the cancer much with the radiation, but it did slow the growth and make surgery easier. I would love to hear from people who have had surgery and feel like they were left to figure everything out on their own after that. How was your healing journey? How much pain were you in after surgery, and for how long? Did you go for physiotherapy? Did you have to ask for that or did the oncologist/surgeon prescribe that? How did you find support during your cancer journey? COVID seems to have messed up the support groups that may have existed anywhere i think. 
to Agnesk, did you ever find the support you needed during your cancer walk? Have you kicked it to the curb? How are you now? I pray you are well. 

Sarcoma- Surgery?

Posted by Lacey_Moderator on Oct 1, 2020 9:45 am

Hi Mommalee‍ 

So glad you posted!

We have a whole forum dedicated to rare cancers here:https://cancerconnection.ca/discussions/viewcategory/77. As well as a forum specifically for sarcoma here: https://cancerconnection.ca/discussions/viewcategory/12218. Here is a list of the search results for other discussion about soft tissue sarcoma's on the site. If you see someone you want to connect with you can hit reply and tag them by typing the @ Symbol and their username.

I'd like to introduce you to Village‍, Dodbob‍, Alanaz‍ who have experience with a sarcoma diagnosis.

Do you have a date for surgery booked?