VII. Metastasis
Where did the support services come from?
At the end of the Metastasis Diagnosis Survey, participants provided additional information about their experience that they thought would help other patients and experts provide the best patient care. They shared what they learned through their own journey with metastasis and offered insights and advice to support others. A number of comments are outlined below:
50%
PATIENT ADVOCACY ORGANIZATION
0%
TREATMENT CENTER
“Making sure that patients are aware to advocate for molecular typing of their tumor with biopsy. This is not always offered and can guide treatment. Researching options and not being afraid to search out second opinions.”
50%
OTHER (FACEBOOK)
“Be aware of internet sites for metastatic ocular melanoma.”
“Limited options for lung metastasis and difficult to find options since most clinicians treat liver mets and are surprised when a patient has lung mets only.”
Did the patient find the support services helpful?
0% 0%
NOT AT ALL
“Just make sure that you are comfortable with your diagnostic team and that they are up to date on treatment and new trials.”
A LITTLE BIT
“Always question your oncologist and challenge them when things don’t add up. Always get a second opinion.”
25%
SOMEWHAT
75%
0% 0%
QUITE A BIT
“OM patients/doctors should know that OM does not only metastasize to liver/lung. If so much emphasis hadn’t been placed on that, metastasis may have been diagnosed sooner and not invasive to my inferior vena cava (IVC).”
VERY MUCH
2022 VISION Registry Data Report
51
Made with FlippingBook Ebook Creator