Mesothelioma is one of the hardest diseases to diagnose. In order to receive the best treatment and an accurate prognosis, patients should always seek a mesothelioma second opinion.
Written by Jenna Campagna, RN
Fact Checked
Mesothelioma second opinions are important because they can change your outlook. Mesothelioma is commonly misdiagnosed.
The American Cancer Society lists having a “rare or unusual cancer” as a top reason for seeking a second opinion. Others related to mesothelioma include seeking the input of a specialist or getting clarity regarding the type or stage of the disease.
There are many benefits to getting a mesothelioma second opinion:
Receiving a mesothelioma diagnosis can be an intimidating experience. However, it shouldn’t keep you or your loved one from seeking the best medical care. Part of the diagnostic process is getting input from mesothelioma experts, which is where many patients go for a second opinion.
Most people are diagnosed with mesothelioma after meeting with a general oncologist. Unfortunately, these medical professionals don’t have much experience diagnosing or treating the disease. Based on their knowledge, they may tell a patient they’re not a surgical candidate.
On the other hand, getting a second opinion from a mesothelioma expert may reveal new hope. In fact, it may provide patients with opportunities for treatment.
Mesothelioma second opinions are vital to beating this cancer and living a long, fulfilled life. You could be a candidate for aggressive surgery, a life-saving clinical trial or other therapies. This can lead to an improved mesothelioma prognosis and longer survival.
A significant reason you should get a second opinion is staging. The stage of your mesothelioma determines your treatment. If you’re a late-stage patient, you may receive a poor prognosis and have barely any treatment options.
A study published on ScienceDirect found that up to 62% of second opinions resulted in a change to diagnosis, treatment or prognosis.
62%
A study published in the Journal of Thoracic Oncology found that around 13% of stage 3 and stage 4 mesothelioma cases are “downstaged” to stages 1 or 2.
13%
For instance, your experience could be similar to Alexis K., who was originally diagnosed with stage 4 peritoneal mesothelioma. A second opinion revealed a less-advanced disease than originally thought, and she underwent life-saving surgery. She has survived for more than 13 years since her diagnosis in December of 2007.
Getting a second opinion also helps patients feel more confident about the treatment they are receiving. Being certain about a mesothelioma diagnosis and treatment plan can relieve stress and give peace of mind. Don’t leave any questions left unanswered.
It is important that patients take their own prognosis into their own hands. Even after a second opinion, if a patient isn’t pleased with the treatment plan given to them, they are encouraged to seek other medical opinions.
“What a huge difference a second opinion was for me,” said pleural mesothelioma survivor Jodi Page. “I went from an absolute death sentence to a possibility of life. I was told that I had stage 2 mesothelioma (not stage 3 or 4) and that surgery was still a possibility.”
You have three options for how to connect with a mesothelioma specialist for a second opinion:
Ask your primary physician. He or she should refer to you a specialist — or suggest multiple options — who have a positive reputation and will either confirm the original diagnosis or discover the correct one.
Contact a specialist on your own. You can take matters into your own hands and conduct the research yourself. Search among cancer centers and doctors in your area to see if any specialize in mesothelioma.
Use our helpful Doctor Match program. Our Doctor Match feature makes finding a specialist much easier and less stressful. We’ll find a specialist that will look at your medical records and can give you the answers you need.
You may not feel it is necessary to ask for a second opinion. In fact, patients may feel it is a sign of disrespect to their medical practitioner.
Don’t ever feel guilty about asking for a mesothelioma second opinion. This could significantly alter your mesothelioma survival time.
“My strong advice to patients is to always ask for a second opinion,” says mesothelioma specialist Dr. Michele Carbone, who works at the University of Hawai'i Cancer Center.
Your doctor should understand, as this is your health and your life. They may even suggest which mesothelioma specialist to meet with for a second opinion.
You may have to travel if a specialist isn’t located near where you live. Traveling shouldn’t prohibit your treatment options. In many scenarios, a mesothelioma specialist will consult with a patient for free virtually or over the phone before any in-person appointments.
You should always seek a mesothelioma second opinion before undergoing any major surgical operation. Operations for mesothelioma are more specialized than for other cancers.
Due to the rarity of mesothelioma, cancer centers and doctors often disagree about the best methods to treat the disease. A good example is the discussion regarding how to treat pleural mesothelioma.
There are currently two surgical procedures for pleural patients: extrapleural pneumonectomy (EPP) and pleurectomy with decortication (P/D). EPP involves removing the affected lung, which ensures a better chance of complete disease resection. P/D spares the lung, which can reduce complications and improve quality of life.
Doctors have differing opinions about which surgery is best for patients in each stage, especially stage 2 and 3. Getting a mesothelioma second opinion can reveal more information about each surgery and help you make the best decision.
You also may benefit more from chemotherapy or radiation prior to undergoing surgery. Dr. Elliot Wakeam, of Michigan Medicine, advocates for the SMART protocol. This treatment regimen involves surgery for mesothelioma after radiation therapy.
Your general oncologist may suggest surgery right away. Doing so may lead to stress, complications and more challenges caused by surgery. Specialists may propose using other therapies to improve your survival chances and quality of life.
Mesothelioma doctors are generally very thorough with their diagnosis before recommending surgery. However, being certain about the procedure can provide you with confidence and relief. Learn more about the benefits and challenges of surgery in our free Mesothelioma Guide book.
Receiving a second opinion will help you become more knowledgeable about mesothelioma and what treatment options are available. If you visit one of the top cancer centers and speak with a mesothelioma specialist, you’ll likely improve your prognosis.
Mesothelioma second opinions provide peace of mind and comfort to patients with this cancer. Getting confirmation of your diagnosis from a specialist will allow you to move forward with treatment. A second opinion also may reveal new information on staging, cell type and therapeutic options, which can impact your prognosis.
If you were diagnosed with mesothelioma, we encourage you to get a second opinion from one of the top-ranked cancer centers. These institutions likely have doctors who specialize in mesothelioma. They’ll provide an accurate diagnosis that either confirms your initial one or is more reliable.
Last Edited: March 18, 2021.
