Mesothelioma - FAQs
What additional testing will I have / Will I need additional testing?
You may undergo additional diagnostic procedures before your initial consult at UMMC, including a biopsy and imaging scans to gauge the extent of the disease.
If you are of the mind to be aggressive in regards to your diagnosis of Mesothelioma and you are a surgical candidate there will be several additional tests that will be required before any surgical procedure will be performed.
What is my cell type?
Your cell type could be either:
Biphasic (Mix of Epithelial and Sarcomatoid cells)
What does my cell type mean for my treatment plan?
Treatment options will depend on the cell type of your Mesothelioma diagnosis. Pure Epithelial Mesothelioma appears to have a more favorable outcome in regards to response to treatment as opposed to Sarcomatoid or Biphasic Mesothelioma.
If your cell type is pure Epithelial Mesothelioma, surgery and its role in your diagnosis will be discussed at length as an option in your initial consultation.
Who can I bring with me to my appointments?
Anyone can come with you to the appointments. If a family member lives out of state, you can conference them in on the phone so they don’t miss any information that will be discussed.
What does the surgery include?
If you are a candidate for surgery at UMMC, it is with the understanding that, at this time, surgery for mesothelioma is still considered experimental. The surgery that is performed here at UMMC is called the Extended Pleurectomy Decortication (EPD). This is a lung sparing surgical procedure.
The EPD includes removing the Parietal and Visceral Pleural lining of the lung. While removing the pleural lining, lymph nodes in and around the lung affected with mesothelioma will be removed during the surgical procedure and further evaluated by a Pathologist. Once the Pleural lining is removed, heated povidone-iodine solution will be placed in the chest to dwell.
Once completed the heated solution will be removed from the chest cavity and the chest will be surgically closed with 3 chest tubes.
How long is the surgery?
Surgery will last anywhere from 6 hours up to 12 hours or longer depending on the extent of the disease found in the chest. The surgery is an extensive surgery where the surgeon will be extremely meticulous in the removal of the pleural lining from around the lung and chest cavity.
How long will my hospitalization be post operatively?
Hospitalization will be anywhere from 1 week up to 3 weeks or longer depending on any complications that may arise and your body’s ability to recover after surgery.
What will be expected of me while I am hospitalized post operatively?
Recovery while you are hospitalized will depend on the complexity of your surgery, your pain control and pre-operative physical activity. The first day post-surgery your goal will be to get out of bed and sit in a recliner for a minimum of 1 hour.
Everyday there after you will sit in the recliner and surpass the amount of time you sat in the chair the previous day. The goal is to be able to tolerate and sit in the recliner for a majority of the day and only spend time in the bed to sleep. You will also be encouraged to walk every day and each day you will be expected to walk further than the day before.
The more you are out of bed sitting and walking the easier your recover will become and the faster you will start to heal.
How long is my recovery when I return home?
Post-operative recovery is about 6 weeks before you will be cleared to progress forward with your recovery or any further treatment. Every individual is different in how they bounce back after surgery so this time frame may vary.
Recovery after surgery and chemotherapy will be anywhere from 6 months to one year until you begin to feel back to your baseline.
What will be my follow up post-surgery?
If you were a candidate for surgery and you have had your surgical procedure performed, you will return to clinic with a most current CT scan of your chest as soon as you have completed chemotherapy treatment. We will bring you back to our clinic and review your scan with our Multidisciplinary Mesothelioma Tumor Board.
You will then follow up with the team every 3 months with a CT scan of your chest for the first 2 years post-surgery and Chemotherapy. After 2 years you will follow up with us every 6 months with a new CT scan. Once you hit the 5 year mark, you will follow up with us once a year with a yearly CT scan.
If I live out of state do I need to come to the University of Maryland for my testing or chemotherapy to be performed?
For testing, scans or chemotherapy we will work closely with you, your home Medical Oncologist and primary care physician. We understand that it may not be convenient to travel to Baltimore for every test, procedure or appointment. We will stay in contact with you and your physicians every step of the way to make sure you are receiving the correct course of treatment and care.
For any follow up scans we will work with an imaging facility closer to where you live for you to have further surveillance scans. The scans and reports will be sent to our office and our Thoracic Team and Multidisciplinary Mesothelioma Team will review your case and scans to evaluate for any disease progression, recurrence or no evidence of disease.
You will receive a phone call from the Mesothelioma Nurse Navigator, who will explain what was discussed by the Multi-D team.
What should I expect in regards to Chemotherapy?
In regards to chemotherapy you can expect to have at least 4 rounds of treatment either pre-surgery or post-surgery. You may even receive chemotherapy before and after surgery. Chemotherapy is currently the only known treatment for Mesothelioma.
Our Medical Oncologists will recommend a course of systemic therapy that is appropriate and tailored to the patient.
Are you sure I have/this is Mesothelioma?
A biopsy (most likely a VATS biopsy or CT guided biopsy) was performed and a pathologist has evaluated your specimen very closely to make the final diagnosis. To determine that you have Mesothelioma a special stain is used to verify that the diagnosis is in fact Mesothelioma.
I’m having a lot of side/chest pain post operatively. Is this normal?
Yes, this is normal and to be expected. The extent of the surgical procedure performed on your chest included manipulation or muscle, nerves and ribs. A lot of the pain and discomfort you are experiencing is the nerves re-growing.
It will take about 6 weeks for the nerves to regenerate but the chest/side pain can last up to 2 years while the nerves continue to return to their normal function. Side/Chest pain or discomfort will vary between each and every patient, but it is to be expected and will diminish in time.
What are the most important things I can do when I return home?
The most important thing you can do when you return home is to NOT become sedentary.
It is important that once you return home your recovery continues. You will need to continue your daily walking. The more you are up and moving the better you will begin to feel. You will need to walk a minimum of 30 minutes a day.
Walking will help to decrease the fluid in your extremities (arms and legs) as well as help heal and expand your lung. That being said your body does need to rest and recuperate. If you are feeling tired, listen to your body and lay down. You will sleep a lot when you return home and this is normal. The point is to NOT lay in bed or sit in a chair all day long once you have left the hospital. We want you up and moving as much as you can tolerate.
You also want to make sure you are eating and staying hydrated. Your nutrition plays a vital role in your healing and recovery. If you are unable to eat like you did before surgery that is ok. Try to eat 6 small meals throughout the day. Incorporate protein shakes into your diet. Make sure you are getting the nutrition your body needs to help you heal.