My 78yo MIL recently had thoracentesis to remove fluid from her lung. She was notified the results were suspicious for well differentiated mesothelioma. After doing some internet research we are of the understanding that it is an extremely rare subtype of epithelial mesothelioma. She lives in Bellingham, Wa and has a consult with a local oncologist next Monday. Being that it is a rare cancer we tried for a referral to Swedish but her insurance denied it. Can you give us some pertinent questions to ask the oncologist? Also, any advise would be greatly appreciated.
Wed, 05/28/2014 - 20:37
I think the main question to ask is about whether she might possibly be a candidate for surgery, which is probably not likely in a 78 year-old (the surgery is a huge amount to go through and very rarely done in someone over 70-75). Beyond that, the questions are really:
1) Is treatment defintely recommended now, or would it perhaps make sense to wait to see progression?
2) what chemotherapy would be recommended?
It may sound incredible to recommend against any treatment, but some well differentiated mesotheliomas can be so slow-growing that people can sometimes do very well with no treatment for a long while, such as if visible progression takes years and a patient has minimal symptoms.
The main chemotherapy recommendation is usually cisplatin or carboplatin with Alimta (pemetrexed). Cisplatin is better studied but harder to tolerate and often not recommended in patients over 75 or so, especially since carboplatin/Alimta can lead to very comparable results in mesothelioma.
Thu, 05/29/2014 - 06:37
Thank you so much for the reply. I now have the results of her CT scan.
1. Dominate right upper lobe soft tissue mass contiguous with the pleural surface. There are variably sized areas of nodular pleural thickening within the right hemithorax and to a lesser degree the left hemithorax. CT directed biopsy may be performed, upon request, as clinically indicated.
2. No pathologically sized mediastinal or hilar adenopathy.
3. Hiatal hernia.
4. Findings are suspicious for malignancy, either metastatic or primary (to include mesothelioma.)
First she was told she had mesothelioma then the chest conference note said “suspicious for well differentiated mesothelioma.” Now, reading what the CT scan says we’re wondering if she needs a biopsy to determine the actual type of cancer. It’s very confusing and our concern is she receive the best course of treatment for her situation. She has had asthma type symptoms for aprox. 2 years. Would you recommend further testing?
Cancer is scary! We’re so glad we came across this website.
Thu, 05/29/2014 - 10:40
Hi kalena, Cancer is nothing if not scary. I'm sorry your friend has it. There's a lot of info in your 2 posts so I'll try to explain what some of it means and add links to blog posts and forum posts that discuss in further detail.
The only way to dx cancer is to study cells under a microscope. Normally that means to biopsy a tumor in lung and other solid tumor cancers. One exception in lung cancer is to catch cancer cells in the fluid of a pleural effusion like was done in your friend's case.
Though a biopsy may, only may, determine whether the cancer is well or poorly differentiated or somewhere in between; it won't change treatment options. (going out on a non medical limb) Well differentiated may explain why she's had symptoms for 2 years; because well differentiated is usually slow growing. Most oncs wouldn't consider that a good reason for a biopsy because biopsies can cause their own sets of problems. The good thing about slow growing is probably obvious, it can be treated less aggressively meaning fewer side effects, fewer treatments, longer and fuller life.
The radiologist who writes the scan report is a doctor who doesn't treat patients but reads and reports what is seen on the scan. If there are previous scans the path will compare. But the conclusions such as suggesting a biopsy for further detail to a report are purely suggestive. Decisions are made by those with all the info not just a scan.
Unfortunately when tumors are on both sides, right and left, the dx is stage IV. Again, if the tumors are slow growing and she responds well to treatment she can do well for a long time.
I've never let one insurance denial stop me from trying again. Perhaps take the approach of a second opinion where she can use a local doc then visit the second opinion doc at transitions.
I'll add links in a bit. I hope she does well for a long time. She'll surely do better with a friend like you ;)
Thu, 05/29/2014 - 15:14
Thank you, Janine. Lots of good information.
Mon, 06/09/2014 - 12:26
A chapter by the title of "Benign Mesotheliomas and Mesothelial Proliferations" in the book "Malignant Mesothelioma" (Eds. Pass, Vogelzang & Carbone) contains some helpful information on well-differentiated papillary mesothelioma (WDPM).
It shares that WDPM is a rare tumor considered of "low-grade malignancy." The majority of cases develop in the peritoneum, but cases have developed in the pleura (lining of the lungs), heart lining and tunic vaginalis. Clinical presentation is pain and effusion. Like others have shared in the above posts, the tumor is usually slow in its growth rate. For this reason, many doctors opt to monitor the patient closely to avoid subjecting them to potentially harmful cancer treatments that might not be effective.
A biopsy known as a thoracoscopy is about 98 percent effective at diagnosing mesothelioma. Sometimes, the fluid collected in a thoracentesis is sufficient enough to suggest mesothelioma. However, a thoracoscopy is considered the Gold Standard when it comes to diagnosing mesothelioma.
Age and overall health are important factors that doctors consider when advising treatment for mesothelioma. The WDPM type can be managed well in many patients, but overall health & age greatly affect how well someone will respond. Sometimes, the chemotherapy used to treat WDPM causes more side effects than the cancer itself and may not greatly impact overall survival.
Drs. Eric Vallieres and Alexander Farivar are the two thoracic surgeons at Swedish Medical Center who have experience treating mesothelioma. You might be able to contact an admin at the hospital or a patient advocate who could offer tips on how to get the insurance approval.
Best of luck, let me know if you have any follow-up questions. She's fortunate to have you for a DIL.
Mon, 06/09/2014 - 18:23
Thank you, Michellew!
We actually had an appt with Dr. West today at Swedish. We feel much better after consulting with him. An oncologist suggested she start chemo right away and advised Cisplatin with Alimta. After discussing her case with Dr. West we decided to wait awhile for another comparison scan, then if we decide to go ahead with chemo to go with carboplatin with Almita.
We will contact an admin or patient advocate on how to possibly be reimbursed by her insurance for the visit.
Tue, 06/10/2014 - 10:16
Glad to hear she got an appointment with Dr. West at Swedish. It seems their treatment approach is considerate of how slow-moving your MIL case may be. Carboplatin is easier on the body than Cisplatin, which might be a wise choice on behalf of the doctor when considering her age. Sounds like you all are in good hands, which is good to hear. I wish you all well as you move through this experience.