{"id":59289,"date":"2021-09-17T13:00:16","date_gmt":"2021-09-17T17:00:16","guid":{"rendered":"https:\/\/rarediseases.org\/a-message-to-chondrosarcoma-patients-shaynas-rare-cancer-story\/"},"modified":"2021-09-17T13:00:16","modified_gmt":"2021-09-17T17:00:16","slug":"a-message-to-chondrosarcoma-patients-shaynas-rare-cancer-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/a-message-to-chondrosarcoma-patients-shaynas-rare-cancer-story\/","title":{"rendered":"A Message to Chondrosarcoma Patients: Shayna\u2019s Rare Cancer Story"},"content":{"rendered":"

Shayna had advanced metastatic chondrosarcoma, and her\u00a0disease progression defied many expert opinions\u00a0and expectations.\u00a0In\u00a02015,\u00a0Shayna was misdiagnosed with scoliosis,\u00a0and nine months\u00a0elapsed\u00a0before she was\u00a0accurately diagnosed. She was prescribed physical therapy and exercises,\u00a0which were ineffective in reducing her pain.\u00a0Early detection is needed in diagnosing chondrosarcoma, and\u00a0we found\u00a0a lack of information available about the disease.<\/span>\u00a0<\/span><\/p>\n

Other false assumptions and misinformation were communicated to\u00a0our\u00a0family.\u00a0We were\u00a0told that if the disease\u00a0would reappear, it would be in the spine, when it ended up\u00a0surfacing\u00a0in her lungs and toe.\u00a0Oncology staff and doctors initially misdiagnosed the mass in Shayna\u2019s toe as an infection,\u00a0given the rarity of appendicular metastasis. In August 2018,\u00a0Shayna started experiencing migraines.\u00a0We\u00a0were\u00a0told that chondrosarcoma does not affect the brain, but an initial MRI on her brain was done to rule out any brain mass, and none were found at that time.\u00a0In 2019,\u00a0a second MRI revealed seven masses found in her brain.<\/span>\u00a0<\/span><\/p>\n

When new visual\u00a0field, headache and\u00a0abdominal pain symptoms developed\u00a0following identification of brain masses, no further abdominal evaluation was pursued. It was believed that the abdominal pain was due to the central nervous system findings, when in fact,\u00a0Shayna\u00a0had a developing colonic perforation. Family requests for abdominal imaging were\u00a0declined, and it was recommended to provide gas tablets and antacids,\u00a0which were ineffective for\u00a0her\u00a0pain.\u00a0We were\u00a0also told that the growth of conventional chondrosarcoma was\u00a0slow when\u00a0rapid growth occurred from head to toe in the last five months of her life.\u00a0The delay of identification of the aggressive nature of her\u00a0disease\u00a0altered any planning of other treatments and trials.<\/span>\u00a0<\/span><\/p>\n

Through sharing Shayna\u2019s story,\u00a0my goal is to give\u00a0some\u00a0direction to patients and families who have been newly diagnosed with chondrosarcoma. I\u00a0want to\u00a0stress the importance of advocating for patients\u2019 treatment by insisting\u00a0to\u00a0cast a wide net and examine all available treatment\u00a0options and\u00a0verifying through second and third opinions that the treatment decisions made are the right\u00a0ones. This is also a message to the oncology community that there is a lot of work\u00a0to be done to find\u00a0viable\u00a0treatment options for chondrosarcoma.\u00a0There needs to be more compassion and urgency for cancer patients trying to obtain life-saving treatment and care. The priority of cancer research trials seems to be to\u00a0obtain patients that qualify for a set of criteria,\u00a0and the trial itself appears to be very\u00a0regimented\u00a0as opposed to focusing on the individual patient\u2019s needs. Medicine is designed to treat individual patients with compassion; clinical trials and research should do the same.<\/span>\u00a0<\/span><\/p>\n

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more<\/a>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Shayna had advanced metastatic chondrosarcoma, and her\u00a0disease progression defied many expert opinions\u00a0and expectations.\u00a0In\u00a02015,\u00a0Shayna was misdiagnosed with scoliosis,\u00a0and nine months\u00a0elapsed\u00a0before she was\u00a0accurately diagnosed. She was prescribed physical therapy and exercises,\u00a0which were … <\/p>\n

Continue reading “A Message to Chondrosarcoma Patients: Shayna\u2019s Rare Cancer Story”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13157,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[232,192,505,2754],"tags":[253,203,2761,798,2045,797],"class_list":["post-59289","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-patients-members","category-patient-stories","category-voices-of-rare-cancer","tag-advocacy","tag-cancer","tag-chondrosarcoma","tag-rare-cancer","tag-rare-cancer-day","tag-rare-cancers"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59289","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59289"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59289\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13157"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59289"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59289"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59289"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}