Is it possible to develop mesothelioma without asbestos exposure?

You can take it as "most likely caused by asbestos," but I've read different figures and claims, with no time or expertise to validate any of them.

One site said asbestos is the ONLY cause of mesothelioma. (Seems a bit presumptuous)

One site said asbestos is the only KNOWN cause of mesothelioma. (Perhaps a more supportable claim)

One site said asbestos is known to be associated with about 80% of mesothelioma cases.

One site said asbestos are/were often present in other naturally occurring products that had not been purified to remove it (e.g., talcum powder, makeup), so it could still be asbestos sneaking into your life.

One site even said second-hand exposure to asbestos (via spouse's clothing, etc) could be a cause.

I don't recall any of them clarifying whether those claims pertained specifically to pleural mesothelioma (around the lungs) vs peritoneal or other body parts.

One piece of data you'll want from your oncologist (after location -- pleura, peritoneum, etc) is the cell type: epithelioid, sarcomatoid, or bi-phasic (combination of both). That would be confirmed by a very close inspection of your pathology slides, and may warrant a second, independent read of the slides to confirm, since it dictates which treatment you might receive.

My 85-year old father is in the late stages of his battle with malignant pleural mesothelioma. The first lab to look at his slides diagnosed it as epithelioid (I think), but a more expert second opinion also found sarcomatoid cells, re-classifying it as bi-phasic.

I will recommend you immediately begin your search for a mesothelioma specialist, unless the oncologist you're planning to see is one already, because this is still kind of a rare disease for oncology generalists and even for a lot of lung specialists.

Another recommendation is that you get at least two genetic tests done as soon as possible, so you can have results as soon as possible, which may enable you to get the right treatment sooner or begin with a clinical trial that you might otherwise be ineligible for by starting with some other treatment first.

One of the genetic tests would be a "germline" test to look for hereditary mutations passed down from your parent(s); Invitae is one example of such a test. The other type is for "somatic" mutations (those caused by the environment; Guardant 360 is one example of several available. My dad's small-town oncologist was reluctant to order either one, but eventually ordered both after I insisted (based on my own previous test showing an ATM mutation, discovered while treating my pancreatic cancer).

There is a third test, from Grail (https://www.galleri.com/what-is-galleri/types-of-cancer-detected#block-glossary-45819) that claims to detect malignant pleural mesothelioma, and might be a nice, non-invasive data point to either confirm or question other results, or detect the possibility of other cancer DNA in your bloodstream. It's not an FDA-approved test, and would probably cost you $950 out of pocket, and my experience with it was disappointing (failed to detect recurrence of my pancreatic cancer).

In short, your treatment options are probably traditional chemotherapy, immunotherapy, and/or surgery (depending on your overall fitness and degree of spread). Knowledge of any mutations/fusions you possess will help guide the treatment, and the sooner the better.

I don't have a lot of answers, but between my own cancer and watching my dad's battle this past year, I've learned a few things. Feel free to send me a direct message if you'd like to talk more. Wishing you the best!

Thanks so much for such a detailed response. Your estimation of the reliability of a mesothelioma diagnosis seems consistent with what I have been able to uncover online. One thing I did not mention is that I had 6 wks of radiation after the breast cancer surgery (2006) that was performed on the same side as the current "mesothelioma." I have seen at least one source mention that radiation may cause mesothelioma.

Based on the current cytology results, the type is pleural epithelioid. My PET scan did not seem to detect the presence of cancer, but I have yet to discuss it with my oncologist who may see more subtle signs than those reported by the radiologist.

So, if it is mesothelioma, my decision will be how or if to treat it. Chemotherapy really frightens me, especially if the cancer cannot be eliminated. If I may ask, how has your dad treated it, and how has his experience been? I know everyone responds differently.

My dad was offered immunotherapy with Opdivo + Yervoy at two centers on their conclusion of epithelioid, and a combo of three traditional chemo drugs by the third center. I'll have to dig for notes from a year ago. I don't remember if the third center's recommendation for traditional vs immunotherapy was before or after the revelation of sarcomatoid cells as well, but their primary alternative was also the Opdivo + Yervoy. I remember that one of the three traditional chemo drugs was carboplatin, in part because of his ATM mutation, and in part because at his age (85) the other platinum-based drugs (Oxaliplatin and Cisplatin) would have been particularly hard on him.

In the end, he chose the Opdivo + Yervoy at his hometown oncology clinic, with about 1-1.5 hours of infusion every three weeks (one drug every time, the other added in on alternate visits every 6 weeks). After about 4 months, the fatigue really started getting to him. Part way into his 5th month, the updated PET scan revealed the treatment wasn't worth the fatigue he was experiencing, so he stopped treatment in early January of this year.

Unfortunately, his oncologist didn't realize how far my dad had declined, and was about to recommend continuing treatment. Even more unfortunately, when a patient declines like my dad did on this combo of drugs, the protocol recommended by the manufacturer (per my understanding, and I'm not a doctor!) was that he should have been given a course of steroids to calm his immune system and help "wash out" the drugs from his system. That did not happen, and my dad spent 2 weeks in the hospital and 3 weeks in rehab as a result.

It was his experience that cemented my recommendation to always seek out a center of excellence for your treatment. You might get the same DRUGS at a small-town clinic, but you might not get the same CARE as you would elsewhere.

With my dad, the third center we consulted said if he had an "ALK fusion" or another similar mutation/fusion that several targeted therapy drugs could have been alternatives, but his and his disease's genetics did not qualify him for those. Given his advanced age, other comorbidities, and extent of metastasis, surgery and radiation were not options for him. He did have a pleurex drain catheter inserted after diagnosis to remove the fluid, but he was able to have it removed after a few sessions of the immunotherapy seemed to dry things up for the most part. You have to keep an eye on the fluid accumulation because it takes up space your lung needs to expand, and can also collapse your lung and get it kind of stuck together and hard to restore.

One of the interesting treatments that's approved for treatment of mesothelioma (maybe only in clinical trials, not sure) is called Tumor Treatment Fields equipment. Basically no side effects except skin irritation, it uses a battery pack with a radio transmitter connected to little "electrodes / antenna patches" on your back and abdomen, and sends a tuned electrical field through your body, disrupting the tumors' ability to reproduce. Sadly, none of the doctors we consulted on my dad's case were interested in pursuing this path. It seems there is a lot more paperwork involved than most want to take on, but if you find a center/doctor already doing a clinical trial with it, half the battle is already won.

The other interesting, non-conventional treatment that is an option is called HITHOC (Hyperthermic intrathoracic chemotherapy), similar to a treatment called HIPEC for abdominal/peritoneal cancers. I'll leave that one for you to research and pursue, but I recommend asking a couple expert doctors about it if you can get multiple opinions. If you're strong enough to get a combo of surgery plus chemo like that, it might be worth a go.

The other really weird thing about my dad's experience was related to oxygen; i.e., he started off with some pretty bad sleep apnea, but inadequate lab tests never got him qualified for oxygen to be covered by insurance. Then he lost enough weight during his treatment that sleep apnea was not much of a problem, and his pulse-ox tests were always high enough during exertion tests that he couldn't qualify for oxygen that route either. It seems like despite low iron/hemoglobin/hematocrit/RBC counts suggesting some kind of anemia (implicated in his fatigue), they were never low enough. I *think* he has some type of non-iron-deficiency anemia that, despite having "adequate" oxygen in his blood, he's not able to move that oxygen into muscle tissue, and that's why he gets so fatigued by everything. (That plus his Afib.)

Anyway, my last words here are to just be really assertive about getting the care you need and want. My dad has never been one to question doctors, and in the course of his last several diseases, doing so earlier and more often would probably have led to better outcomes. Go fight this fight with all you've got, but do what you can to have your support system fully engaged, and take care of yourself -- food, vitamins, rest, and breaks from therapy if you need them. I hope to read your success story years from now! 🙂

@markymarkfl , thank you for sharing your father’s story, and the info that you’ve learned. I hope you are both finding comfort during these difficult days.

Thank you for such caring and experienced advice. You have given me more strength to face the diagnosis and seek treatment. I wish you and your dad strength and comfort in the coming days. I know those words are inadequate, but you are both in my thoughts . . . .

@jjbees, Thank you for those kind thoughts! My dad and I both feel the positive presence of all the thoughts and prayers lifted up on our behalf, and it is that "daily bread" that keeps us going through all this. (Those, plus my wife's cooking. 😉 )

One other piece of my dad's experience I wanted to share was related to the accumulation of fluid.

Disclaimer: I'm not a doctor or medical researcher, just a google-searcher relaying one patient's experience.

Terminology-wise, there is commonly "plerual effusion" (accumulation of fluid in the pleural lining around the lungs), and "ascites" which occur in the abdominal area. Both may be caused by cancer / mesothelioma, depending on the disease origin and spread. (https://www.uclahealth.org/medical-services/radiology/interventional-oncology/conditions-treated/malignant-pleural-effusions-and-ascites) I saw mention of both in some of my dad's reports, but pleural effusion was the bigger problem, and that's all I'll address below.

Terminology-wise, there is "thoracentesis" and "pleuracentesis," and my quick google searches suggest they are synonyms, but I suspect there are nuanced differences. In my dad's case, the hospital that removed fluid via needle referred to it as thoracentesis. I think the hospital that removed more fluid as part of his surgical biopsy and PleurX drain catheter insertion referred to it as pleuracentesis, and later usage of the PleurX system as pleuracentesis.

I jumped the gun a bit just to introduce terminology. You may already be familiar with the terms or had the procedures done, but just in case, or for the benefit of other readers...

There is a danger in having too much fluid removed at one time, called "pulmonary re-expansion edema." The bottom line is that after the fluid is removed, fluid removed or otherwise produced in other parts of the body may be drawn in to fill that void in the pleura and possibly into the lungs.

The phenomenon is not fully understood, but it seems mainly related to the rapid changes in pressures when the vacuum pressure is applied to suck out fluid and the following pressures returning to normal. Another contributor may be changes in surface and capillary permeability in the lungs and pleura due to inflammation or other disease-related conditions.

The first hospital removed 4.7 liters of fluid from my dad's chest using the needle/thoracentesis procedure. I later heard the maximum recommended removal was 1 liter. It provided some instant respiratory relief (less outside pressure on his lung) and weight loss. I don't know if this contributed to his later issues and hospitalizations, but it may well have.

When he had the biopsy and PleurX cather insertion surgery, his surgeon told me they are able to inflate the lung and maintain positive pressure there to prevent collapse. So, my suggestion is, before any procedure, see if an X-ray or CT scan can estimate how much fluid is present. If there is much more than 1L and surgery can be scheduled, inquire about that route. If not, and the fluid is causing symptoms, the needle thoracentesis may be an option. However, the fluid accumulation may recur and require constant management via PleurX or something similar.

There are probably other patients in the lung cancer forum who can describe the PleurX catheter experience in a lot more detail. In short, there's a clear hose that will come out of your chest on the side, be coiled up, and sealed under a sterile bandage. A few times per week or month, depending on fluid levels, you'll expose the hose and connect it to a special vacuum-sealed jug at that hose, and the fluid *up to 1L) will be drained into the jug. You'll dispose of that, and re-sterilize your hose, coil it back up, and apply a new sterile dressing to cover it up until the next drain. It's not a very bulky hose, but it may impede sleep if you're a side sleeper, and you have to make sure you never snag it on anything that could pull it out. It can sometimes be managed entirely by the patient if they're flexible enough, but it helped to have another person present. A home health nurse performed it the first few times while training us to manage it on our own. My dad started his immunotherapy about a month later. The fluid eventually dried up or compartmentalized where it couldn't reach the catheter, so we had it removed. Now about 7 months since his last treatment, fluid accumulation seems to not be a problem.

Yes, I am very familiar with fluid accumulation; shortness of breath took me to my primary care who did a chest xray and immediately ordered me to the emergency room to get my partially fluid-obscured lung drained via thoracentesis. That's when the drained pleural fluid began suggesting mesothelioma, but cautioned a biopsy was needed to confirm. After one more thoracentesis, a CT scan, and a PET scan I had the surgical biopsy which included a talc procedure to discourage the fluid accumulation. If that doesn't work, the next step for the fluid is the PleurX catheter you described, so I was very happy for your insight on that contraption. When I was in the hospital, they drained the site via a temporary pleural catheter for a couple of days before I could be released. The post surgery catheter was attached to a collector that was about the size of a skinny six pack. Very cumbersome and difficult to move around with it attached, and impossible to sleep comfortably. Hopefully the talc procedure will do the trick for the fluid.

I see my oncologist who has been on board with all these preliminary procedures next week to discuss treatment options. So once again thank you for sharing your dad's experience. It has been helpful and greatly appreciated.