The MCA BlogConnecting with others one story at a time
Today we are very excited to welcome Jan Egerton to the MCA blog to share her incredible story. In catching up with Jan on Facebook, she graciously offered to answer some common questions that all of you in the community often ask. We are happy to share her answers full of strength and valuable information. To connect with Jan, read her blog at Jan's Journey.
How did you find out you had mesothelioma? Did you have symptoms, or a random chest x-ray? Do you know how you were exposed to asbestos?
I had suffered with endometriosis for a long time. Having a hysterectomy in 2000, I thought all my pain in my left side would go and I could start living again. My first major ‘Meso Session’ hit in the October of 2000. I had had earlier warnings covering the previous 2 years, but nothing like this.
I couldn’t breathe without feeling like my lung was sticking to my ribs. The pain was terrible across my back, left ribs, and chest. I was diagnosed with viral pleurisy, as it seemed to diminish in a day. These events continued every 3 months and by 2002 I had pain that lasted longer than a week at a time, but nothing was found. I was sure I had endometriosis in the lung and finally found a doctor who would listen to me. In the September of ‘03 I was shown my MRGI scan. The radiologist had taken a freeze frame of my chest region, which showed white spots right across it. The conclusion was endometriosis and I was started on various hormone treatments. By January 2004 I was never pain free; my back, neck and left side hurt constantly. Finally I was given a walk-in clinic access to a chest physician, as the pains were now constant. After a few more months of having x-rays, in the August of ’04, he sent me for an exploratory operation where the surgeon used Video Assisted equipment. I was told I had mixed mesothelioma, which I didn’t understand, and that I probably had less than a year to live.
In the January of ’04, asbestosis was being advertised by solicitors on TV looking for people who could make claims. My father would say, “I am sure I have that, we worked in it all day.” So all I can presume is it came from my Dad’s overalls. Although, once I was diagnosed, he never mentioned it again. I think he felt guilty for what was happening to me.
What treatment did you have, and what stage were you in when treatment started? What is the prognosis now?
I think I was very lucky being diagnosed when I was. My surgeon had done a remarkable job in taking every bit of mesothelioma out of my chest. In those days, a pleurectomy decortication wasn’t heard of, but he had removed quite a portion of the pleura as well as two large tumors from my lung. Although I was not informed at this time, I had mesothelioma. I was quite ill after this operation and needed to go back for further surgery as my lung was bleeding and I couldn’t breathe. Three weeks later, I went back and had a pleurodesis. On the 26th of August, my husband and I were led to a small side room and told the news. I was totally shocked to hear what I thought was going to be a rare form of endometriosis was actually a terminal cancer. My surgery was followed by radiotherapy treatments on the 3 drain sites, but following that there was no other treatment and I was given some information on palliative care.
In the December of ‘04, Premetrexed had 3 trial places left in the Northeast and I was offered a place. I was so pleased, thinking this would certainly keep me cancer free.
Unfortunately, the cancer returned in early 2006. I think the doctors didn’t really want to hear this, as there was nothing they could do then. It took them another year to acknowledge I was right and the mesothelioma was growing. I suffered a lot of heart pain this time too. By the time I re-challenged with Premetrexed and Carboplatin, the mesothelioma had grown to over 2 cm from a clean start. It doesn’t sound like much but if you encircle your whole lung with 2 cm your volume becomes a lot less. I also had various larger tumors, one of which was causing a lot of pain above the kidney.
Unfortunately, the chemotherapy didn’t hold the cancer back longer than 4 months. I was now in the unknown and looking for treatments. I found cryoablation and flew to the United States where I had 2 treatments in 2008. In January 2009, I finally went in for the pleurectomy decortication\EPP surgery in Sheffield, UK. The operation was some 9 – 10 hours and, until it was over, I wasn’t sure what I would come out of surgery with. I lost my pleura, pericardium and diaphragm. I have always been lucky at recovery speed and came home 11 days later. Unfortunately my left lung would not stick and I came home with drain insitu, hoping the air leak I had would shrink. I really believed this time I had finally won the battle.
In the April of ‘10 I knew something was wrong and on my CT Scan 3 small tumors appeared. My mesothelioma began to grow once again. I patiently waited a year and in April ’11, I flew back to the States and had another round of cryoablation on the largest tumors. Killing 3 tumors made me feel a lot better, even though I knew others were sprouting around the lung. Getting rid of 3 felt like a victory over the mesothelioma.
In September ’12, I knew the mesothelioma had once again attacked my pericardium. I was having night sweats more frequently and a heavy pain in my heart region; a slow aching that turns to acute pain. My next CT scan confirmed thickening and fluid around the heart, together with slow multiple growths around the lung.
I began a re-challenge of Premetrexed and Carboplatin in November, but my body had a severe allergic reaction when I was receiving the 2nd dose. Now I am in no man’s land. I am not allowed to have Carboplatin and I know from previous experience that the Premetrexed doesn’t do much without the Carboplatin, having had to drop the Carboplatin in my 2007 re-challenge.
You ask about staging. In the UK, we don’t tend to use staging as much as they have seen some diagnosed with T2 die long before someone diagnosed with T4N. It seems mesothelioma doesn’t play by any rules.
How do you feel this experience has affected your family?
It was a shock to us all. My dad died from a stroke shortly after I was diagnosed and my mother just couldn’t cope. The longer I have survived, the better my brothers do. The main person it has affected is my husband. It is and has been extremely hard for him to handle. At first he seemed to lock it out and not want to talk about it with me, unless we had an appointment. But as the years have gone on I bring it up more and more. He won’t get involved with any organizations or go to any meetings that have anything to do with mesothelioma. We went to one in ‘05 at Newcastle. Everyone there was a widow or widower and he didn’t want to see that. He wanted to see hope, not death.
Over the years I have made decisions about what treatment route to take next, I don’t worry about the outcome or the “what if I die while doing this?”, but my husband does. After every treatment (the worst being surgery), he was the person who looked after me, put me back together, and motivated me to get back to health. I guess because of him I do these things. I don’t want to ever be without him.
At times I am sure my mesothelioma has affected his life more than my own.
You are an important and inspirational Meso Warrior. How do you stay so positive?
Being positive all the time is impossible, although I am lucky to be able to continue working as this gives me an escape from cancer. My mind can’t cope with two things at once anymore, so when I work I am totally focused on my job.
My outlet for anger, as I never want to burden my friends or family with it, is my blog. I found a circle of friends in the same situation through the blog and their contact has helped me stay positive. After quite a lot of pressure from some of them I have finally submitted to joining Facebook, and that can help you stay positive when you read others have come as far and are still going strong.
How has meeting the other Meso Warriors changed your life?
Meeting others with mesothelioma gives you hope. Hope that all our voices are reaching out and making changes to legislation about the use of asbestos. Our numbers are increasing, which is sad, but researchers now have to look into a cure. Becoming a part of a whole bigger picture with Facebook and coming to terms with how many more people are diagnosed today than ever before worries me.
I enjoy supporting the cause and doing the occasional TV interviews or newspaper articles to get the word out. People are still quite ignorant of the damage asbestos can do, until it actually involves someone in their own family. I have to admit; in 2004 I didn’t really know anything about what asbestos could do.
Helping each other is a heartwarming experience, I may be a long term survivor that gives hope to someone just setting out on this journey, just as other Warriors have given me hope. We are all working towards to same goal, find something to turn terminal into chronic, take our death sentence away, and stop causing others to go through the same health risk.
What is the best advice you would give to someone just beginning his or her battle with this disease?
Make notes about how you feel. Keep records of tablets, aches, and pains. These will help you in future years and also help your oncologist.
Find a good oncologist who has some, if not a lot, of understanding about mesothelioma. If they think it’s just another cancer, then find someone else.
Listen to what treatments they have to offer. Weigh up how fit and healthy you are. Can surgery be one of the last treatments you can do, or is it the first to aim for? Many still believe the doctor should be the driving force in directing what treatment route to take. If the doctor is experienced then listen to him. I’ve had to pretty much guide my own treatment over the years and it becomes tiring. You must remember every step of the way that this is your life you are putting into someone else’s hands. You must trust them and have a good relationship if you are letting them guide you.
Research everything. The internet is the starting point. Do not believe articles that say “we can cure you of mesothelioma with our new tonic.” It doesn’t work. Read articles on healthy eating; some alternative foods and therapies can help. You know your body. Get to understand which pains are what. When you go through chemo you will notice which pains have gone but unless you write them down you will never remember them all.
I know it sounds weak but do stay positive. Don’t dwell on having a death sentence – look at it as an early warning signal. Go out and enjoy life, don’t spend it worrying from one appointment to the next. Easier said than done, but you have to - otherwise you will spend your life feeling down and depressed.
I remember between radiotherapy and chemotherapy having a week’s holiday. I did the same between cycle 1 and 2 of my first chemotherapy. You know when scans are due, so in between ensure you are making good memories. When in treatment, try and plan the times you won’t be on treatment. Above all be your normal.
Lastly, if you are making a legal claim, do it early into your diagnosis.