State of Mesothelioma 2025
Please take a few minutes to answer questions about your or your loved one's mesothelioma diagnosis. All of your answers are anonymous. Results will be used to identify trends and improve the accuracy of available resources.
How have you been impacted by mesothelioma?
*
I have been diagnosed with mesothelioma.
My loved one has mesothelioma.
I lost someone to mesothelioma.
I have not been impacted by mesothelioma.
Are you a primary caregiver for your loved one with mesothelioma?
*
Yes
No
Were you a primary caregiver for your loved one with mesothelioma?
Yes
No
Back
Next
Diagnosis
Please answer each of the following questions about the patient. If you are the patient, please answer them about yourself. Reminder: Answers are anonymous.
What type of mesothelioma was the patient diagnosed with?
*
Pleural (lung)
Peritoneal (abdomen)
Pericardial (heart)
Testicular (testes)
Unsure
At what stage was the patient diagnosed with mesothelioma?
*
Stage 1
Stage 2
Stage 3
Stage 4
Unsure
At what age was the patient first diagnosed with mesothelioma?
*
Please Select
Under 50 years of age
50-60 years of age
61-70 years of age
71-80 years of age
81+ years of age
What year was the patient first diagnosed with mesothelioma?
*
Please Select
2023
2022
2021
2020
2019
2018
2017
2016
2015
2014
2013
2012
2011
2010
2009
2008
Earlier than 2008
What year did the patient pass away?
*
Please Select
2023
2022
2021
2020
2019
2018
2017
2016
2015
2014
2013
2012
2011
2010
2009
2008
Earlier than 2008
What is the patient's gender?
*
Male
Female
Prefer not to say
Before being diagnosed with mesothelioma, was the patient ever misdiagnosed with a different disease?
*
Yes
No
Unsure
Which disease was the patient misdiagnosed with?
Lung Cancer
Influenza (flu)
Chronic obstructive pulmonary disease (COPD)
Adenocarcinoma (glandular tissue cancer)
Emphysema
Irritable bowel syndrome
Gallstones
Pneumonia
Other (please specify)
Back
Next
Treatment & Wellness
Please answer each of the following questions about the patient. If you are the patient, please answer them about yourself. Reminder: Answers are anonymous.
What symptoms has the patient experienced? Select all that apply.
*
Chest pain
Excessive sweating
Abdominal pain
Fatigue
Coughing or wheezing
Weakness
Loss of appetite
Unexplained weight loss
Fever
Bowel obstruction
Difficulty swallowing
Trouble breathing
Was the patient eligible for surgery when first diagnosed with mesothelioma?
*
Yes
No
Unsure
What types of treatment has the patient tried or is currently using? Select all that apply.
*
Chemotherapy
Immunotherapy
Surgery
Radiation
Tumor Treating Fields
Clinical trial participation
None, the patient opted for no treatment.
Other (please specify)
Did the patient undergo HIPEC (hyperthermic intraperitoneal chemotherapy) treatment?
Yes
No
Unsure
What type of surgery has the patient had or is planning to have?
*
Extrapleural pneumonectomy (EPP)
Pleurectomy and decortication (P/D)
Unsure
What type of surgery has the patient had or is planning to have?
*
Paracentesis
Peritonectomy With Cytoreductive Surgery
Unsure
What side effects has the patient experienced from surgery? Select all that apply.
*
Coughing up blood
Fatigue
Cardiac complications
Pneumonia
Dry cough
Infection
Pain after surgery
Other (please specify)
What side effects has the patient experienced from HIPEC treatment? Select all that apply.
*
Bleeding
Wound infections
Urinary tract infections
Blood clots
Pneumonia
Bowel obstruction
Disruption of normal bowel motility (which reduces appetite)
Fistula (a connection between the skin and intestines)
Myelosuppression (bone marrow produces fewer platelets and blood cells)
Sepsis
Other (please specify)
Which of the following chemotherapy drugs has the patient used or is currently using? Select all that apply.
*
Carboplatin (Paraplatin)
Cisplatin (Platinol)
Pemetrexed (Alimta)
Gemcitabine (Gemzar)
Unsure
Other (please specify)
What side effects has the patient experienced from chemotherapy? Select all that apply.
*
Chemo brain
Diarrhea
Constipation
Fatigue
Hair loss
Low blood counts
Mouth sores
Nausea & vomiting
Other (please specify)
Which of the following immunotherapy drugs has the patient used or is currently using? Select all that apply.
*
Opdivo (nivolumab)
Yervoy (ipilimumab)
Keytruda (pembrolizumab)
Unsure
Other (please specify)
What side effects has the patient experienced from immunotherapy? Select all that apply.
*
Fever
Body aches
Nausea
Diarrhea
Constipation
Coughing
Fatigue
Weight loss
Skin irritation
Muscle or joint pain
Loss of appetite
Hepatitis
Kidney problems
Pneumonia
Colitis
Hormone Gland Problems
Other (please specify)
How many doctors did the patient get an opinion from?
*
1
2
3 or more
Unsure
Did the patient ever see a doctor who specializes in treating mesothelioma?
*
Yes
No
Unsure
Has the patient received any palliative care (treatment specifically focused to manage pain and alleviate symptoms)?
*
Yes
No
Unsure
Does the patient use any of the following complementary or alternative therapies? Select all that apply.
*
Herbal medicine
Medical marijuana
Acupuncture and/or acupressure
TENS therapy
Energy therapy
Therapeutic and lymphatic massage
Meditation
No, the patient has not used any complementary or alternative therapies.
Other (please specify)
What were your or your loved one’s estimated out-of-pocket cancer treatment expenses?
*
Less than $1,000
$1,000 - $4,999
$5,000 - $9,999
$10,000 - $19,999
More than $20,000
What factors impacted the financial toll of cancer? Select all that apply.
*
Travel
Treatment
Lost Wages
Home Care
Caregiving
None
Other (please specify)
What hardships did you or your loved one experience because of high cancer costs? Select all that apply.
Paying Bills
Buying Food
Avoiding Treatment
Declaring Bankruptcy
None
Other (please specify)
Has the patient ever been in hospice?
*
Yes
No
Unsure
Has the patient's cancer come back or recurred since their initial diagnosis?
*
Yes
No
Unsure
Has a doctor ever said the patient is in remission or is cancer-free?
*
Yes
No
Unsure
Have you (or your loved one) faced challenges accessing mesothelioma treatment?
Yes, due to financial barriers
Yes, due to distance to a specialist
Yes, due to insurance issues
No, I have had access to the recommended treatments
Other (please specify)
Submit
Should be Empty: