Heather Von St. James talks about her experiences with this rare and little-understood form of cancer

How were you diagnosed with mesothelioma, and what were your symptoms? 

I was diagnosed on 21 November 2005, just three and a half months after the birth of my first and only child. I had a series of troubling symptoms after I had my daughter that I thought were just postpartum symptoms. It started with a low grade fever of 99 to 100 degrees fahrenheit. I was extremely fatigued, but what new mom isn't? I started losing a lot of weight, averaging five pounds a week, but I thought it was normal because I was breastfeeding and I had heard that it is a great way to lose weight. However, I had only gained five pounds throughout the entire pregnancy, so that should have given us an idea something was amiss, but we just chalked it up to eating more healthily during the pregnancy. In mid October, it felt like a truck parked on my chest and I was having difficulty breathing. 

I went to the doctor and found out I was also acutely anaemic. After being on iron, and it having no effect, my doctor ordered a chest x-ray, thinking I had a heart virus. It was on that x-ray they saw the buildup of fluid around my left lung. I was immediately sent to the hospital to have a thoracentesis done. They drained over a litre of fluid off my lung, then I was sent for a CT scan to find out what the cause was. It was on that CT scan that they discovered a mass in the lower portion of my left lung. I was scheduled the next day for a CT assisted needle biopsy, and after two weeks of tests on the cells at two different pathology labs, it was confirmed that I had malignant pleural mesothelioma. 

At what age were you diagnosed? 

I was only 36 years old. 

What were you told about your prognosis? 

I was told that the prognosis for pleural mesothelioma was very poor. The doctor told my husband and I that if I did nothing, I would probably be dead in 15 months. I could do chemo and radiation and hope for 5 years, or do a newer experimental procedure with a specialist and, if I was lucky, maybe live 10 years. The current survival rate for a patient with mesothelioma isn't ideal, with only 30-40% of patients surviving past a year. Although, in recent years, the survival rates have improved. 

How did you cope? 

I swore a lot. Okay, I'm kidding – I used many different methods to cope, but the number one thing was to just look at my baby girl. I had to survive to raise her. I would do whatever it took and make the necessary sacrifices so I could be around to watch her grow up. I prayed, I cried, but mostly, I was just determined to live. 

What treatments did you receive? 

I had a risky surgery, called an extra pleural pneumonectomy (EPP), which consists of the removal of the entire lung, the lining of the lung, a rib or two, the lining of the heart, and the diaphragm is also removed on the affected side. The heart lining and diaphragm are then reconstructed with surgical grade Gore-Tex. A chemotherapy agent, in my case it was cisplatin, is heated to 140 degrees fahrenheit, pumped into the chest cavity and washed around for about an hour. It is then pumped out, then I was sewn up. After recovering from surgery for three months, I had four sessions of traditional chemo followed up by 30 sessions of IMRT Radiation. 

Are you happy with the medical care you received – could any aspect have been improved? 

I'm extremely happy with the care I've received. I think in hindsight, there are always things that I think could be done better. But honestly, it was the post-cancer care that was lacking. I felt like I was thrown back into life after dedicating my life to defeating cancer for a year, then I was done and didn't know how to react. I felt lost and alone. I think many cancer patients feel that way once you are out of active treatment. Your life is irrevocably changed, and nothing is like it was. Finding the new normal is not easy, and it would have been nice to have some support and guidance in that. I see this as a huge area lacking in support across the board, no matter what your diagnosis is. 

Were you given any information on clinical trials relating to mesothelioma? 

I think I was, but I remember my husband not wanting to risk anything, so we declined one. I will say this, it was almost 11 years ago, there was not much available for mesothelioma at that time. Mesothelioma is very rare, only about 3,000 cases a year are diagnosed, so clinical trials were few and far between. But at the time, my surgery and heated chemo were in a trial stage, so that was successful. 

Would you have considered taking part in a clinical trial? 

Absolutely, if the need arises. Clinical trials are how the breakthroughs happen, and if I can help the next generation, I'm happy to do it. 

What do you find the most difficult aspect of the condition? The fact that mesothelioma is preventable. It is almost always caused by asbestos exposure. Then there is the whole misconception that having mesothelioma automatically means a huge payout, which it does not. It's incredibly aggressive and most people die within 24 months. Pretty sobering statistics when you deal with this disease day in and day out. 

Do you think the depth and quality of information offered to patients is adequate? 

 At a general practitioner level, no. Most doctors don't have a clue as how to treat mesothelioma and many tell patients to go home and get their affairs in order because they will be gone soon. Disheartening to say the least and sadly many people don't search out another opinion. It is vitally important for patients to seek out a specialist in mesothelioma. They have the knowledge and experience in treating the disease. 

What is your greatest hope/fear for the future? 

My greatest hope is to see a cure for mesothelioma in my lifetime. My greatest fear is that I won't be here for my daughter as she grows up. 