Mesothelioma is one of the hardest diseases to properly 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
Mesothelioma second opinions are important because they can change your outlook and future. Mesothelioma is commonly misdiagnosed due to its rarity.
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. The advantages of this include:
- More treatment options
- Better chances of survival
- Peace of mind about the accuracy of your diagnosis
Receiving a mesothelioma diagnosis can be an intimidating experience, but 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 to 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 the contrary. In fact, it may provide patients with opportunities for treatment that were previously denied.
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 is determined when you’re diagnosed. If you’re a late-stage patient, you may be given a poor prognosis and have little to no treatment options. But many general oncologists misdiagnose the disease’s stage.
A study published on ScienceDirect found that up to 62% of second opinions resulted in a change to diagnosis, treatment or prognosis.
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.
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 12 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 a patient and their loved ones of stress and give them peace of mind. Don’t leave any questions left unanswered, or any doubt lingering in your head.
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.”
We at Mesothelioma Guide have helped many patients like yourself or your loved one get a second opinion regarding their diagnosis. You have options for how to get connected to a mesothelioma specialist. You can either:
- Ask your primary physician
- Use our Doctor Match program
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 prognosis and mesothelioma survival time. You should get as much input as possible regarding your cancer diagnosis.
“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.
You can simply tell your doctor you would like to get a mesothelioma second opinion. They should understand, as this is your health and your life. Your doctor may even suggest which mesothelioma specialist to meet with for a second opinion.
You may be required 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 before they make any travel arrangements.
You can also use our Doctor Match program to find a specialist that fits your needs and is in your area. We’ve helped many patients find doctors within their own state or region.
Our experts know all of the doctors and cancer centers that specialize in mesothelioma. Your primary physician might not be aware of one just a few miles from you. Rely on our experience and resources in your search for a second opinion.
You should always seek a mesothelioma second opinion before undergoing any major surgical operation. This makes it imperative for mesothelioma patients to get a second surgical opinion, especially since 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 of why to get a second opinion before surgery is the discussion among doctors 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, but it may leave remnant tumors in your body.
Doctors have differing opinions about which surgery is best for patients in each stage, especially stage 2 and 3, which is characterized by tumors reaching one of the lungs. Getting a mesothelioma second opinion can reveal more information about each surgery and help you make the best decision for your long-term survival and quality of life.
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. The purpose is to reduce the size and spread of tumors, which makes surgery more effective.
Your general oncologist may suggest you undergo surgery right away for your cancer. Doing so may lead to stress, complications and more challenges caused by surgery. Specialists like Dr. Wakeam 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 suggested by your doctor can provide you with confidence and relief. Learn more about the benefits and challenges of surgery in our free Mesothelioma Guide book.
Last Edited: August 3, 2020.