WebMD Live Chat Transcript: Living with Mesothelioma with Belle McGuckin
Transcribed by WebMD Staff
On October 23, 1998, Belle McGuckin was diagnosed with a rare form of cancer doctors said was not treatable. McGuckin, her family and friends, however, refused to give up hope. They researched the disease, of which local doctors knew little, searched the Internet for information, and subsequently contacted lawyers, doctors and research centers. Their tenacity paid off when they found a specialist in Boston who assured them that something could be done.
events_moderator Welcome to WebMD-Live. Today we will be discussing “Living with Mesothelioma” with Belle McGuckin. Mesothelioma is a disease in which malignant cells are found in the pleura. Belle McGuckin was diagnosed with mesothelioma and she was told it was untreatable, until she met David Sugarbaker, M.D., whose surgical procedure saved her life. Belle McGuckin was diagnosed with a rare form of cancer. However, McGuckin, her family and friends refused to give up hope. They researched the disease — of which local doctors knew little — searched the Internet for information, and subsequently contacted lawyers, doctors and research centers. Their tenacity paid off when they found a specialist in Boston who assured them that something could be done.
events_moderator Belle McGuckin, welcome to the show.
Belle_McGuckin Thank you very much. Continuing from your introduction, I’ve since had the operation. Two weeks ago I found out it’s back, and now it’s in the other lung. This is my first treatment right now. It’s really rare for the condition to spread into the second lung. Only 5% of patients ever experience its move into the second lung, and I’m in that 5%. There’s no more surgery that can be done, so they’ve spoken to the medical oncologist in Winnipeg and advised them what they should do, what drugs they should use. That’s what I’m getting. One of the drugs that I’m getting is not used up here. Not many people know about it. It’s called Gencitabine.
events_moderator How did you find Dr. Sugarbaker?
Belle_McGuckin I found him on the Internet. When I was diagnosed, it was October 24. It’s funny how I’m very bad with dates, but in this case, dates stay in my mind. Three days later, one of my friends started searching the Internet. In Winnipeg, I was told there was nothing that could be done, and that this is always a fatal disease. How I got it, nobody knew. I can’t even trace it back to asbestos. I’ve found out since then that with 20% of the people that get it, it’s not asbestos-related.
Hope is the main thing I keep in mind. The first person to give me any hope was a lawyer out of Texas, called Jonathan David. He inspired me. He told me, “There are things being done out there. It’s not hopeless. You can fight this. There are people who survive it.” Through that, he gave me connections, and through those connections, I found Dr. Sugarbaker and several other doctors. I had to make a choice, and I chose Dr. Sugarbaker. I chose him because in all the literature that I was reading, his name came up so many times. That’s why I went with him, and I was really lucky. With everything I’ve learned about this disease, I’ve felt very lucky. I’ve met fantastic people. I’ve learned so much through it all. I went to Boston, and I went for an assessment to see if the doctor could do anything for me. While I was there, an OR slot came open, and they offered it to me. I took it. I was operated on in two days, and I had an extra pleural pneumonectomy. To explain things further, mesothelioma is a cancer of the pleura, which is the lining of the lung.
events_moderator Can you describe the pain associated with mesothelioma?
Belle_McGuckin I’ve been lucky. I’ve never had any pain. Shortness of breath and coughing are the only symptoms I’ve had.
events_moderator That is very lucky. What is the typical pain others have?
Belle_McGuckin Some people that I spoke to said they do have a lot of pain. It seems to happen more in the later stages, I think.
events_moderator How available is mesothelioma information and support?
Belle_McGuckin Well, I had the support of family and friends, and I couldn’t have done it without them. It’s like with any disease — you know — when you’re faced with something like this. You have to get somebody who is on the Internet or knows how to work it. There isn’t anything else out there. The books out there are at least a year old. As far as the drugs that I’m on right now, information was published about them by an Australian group, and those findings were presented in April of this year. You’re not going to find anything published that’s more current. This information was presented at a conference.
events_moderator Are there different types of mesothelioma?
Belle_McGuckin Actually, there are. There’s “epithelial mesothelioma,” which spreads more slowly, and then there’s sarcoma, which spreads more quickly. Then, there’s a mixture of the two. I have epithelial mesothelioma.
Belle_McGuckin The surgery I had is something that Dr. Sugarbaker has been doing for a while. After he took out my lung pleura, diaphragm and pericardium, he reconstructed my diaphragm and pericardium with Gore-Tex.
events_moderator Gore-Tex? Is that a plastic lining?
Belle_McGuckin It’s a synthetic, man-made material. Before he reconstructed my organs, while the chest cavity was open, he washed me out for an hour with cysplatin (which is the drug they’re putting into me right now). The cysplatin was heated to 4 degrees above body temperature (the heating makes it penetrate the tissue a bit better). That was for the chest cavity. I don’t know what happened, exactly. I guess it depends on exactly what stage the disease is in when he does the operation. He thought I was in Stage I, but I think I might have been in Stage II, because the cells had already moved to my lymph glands.
events_moderator So, you’re saying your cancer has migrated since the first surgery.
Belle_McGuckin Yes. The worst part is that it has gone right over into my lung. It’s unusual. They’ve told me that it’s very unusual. It’s unusual that it happened to me, and it’s also unusual because I’m in the 20% of patients who’ve had no exposure to asbestos. So, the cancer is not in the pleura right now, it’s in my lung. It’s all very unusual.
events_moderator Are you familiar with Bernie Siegel, Norman Cousins, or other alternative healers?
Belle_McGuckin Yes. I haven’t studied them, but I’m going to. I’m going to do whatever it takes. It’s best to try to incorporate the two systems — alternative and traditional.
events_moderator There’s also a lot of information on the Internet about alternative healing, as well.
Belle_McGuckin Right. I am starting to read Norman Cousins’ books.
events_moderator What self-empowering resources would you recommend for someone recently diagnosed with cancer?
Belle_McGuckin I haven’t been involved in support groups. Friends and family have been my support group. If I was to go outside of that, I think I would probably look at something that’s been around for a while, like Bernie Siegel. I would like to get in touch with him and find out what he would have to offer me. You never know when it’s too late. I would even just appreciate the hope he might provide me with. That’s all I really need. That’s all anybody needs, is just the hope. The doctor that I’m starting on this chemo regime with says that 46% of the people respond to this “cocktail.” This information was also published. When I mentioned this finding to the oncologist here, she said it’s far less than that. She didn’t give me any hope. When I hear somebody negative, that’s a big thing. When somebody’s talking negatively, I try to avoid them as much as possible. If they haven’t got anything positive to enlighten me with, then I think those kind of people are best to stay away from for awhile.
events_moderator Where should someone go for mesothelioma treatment?
Belle_McGuckin Well, after your diagnosis, the next thing you have to find out about is staging. There are different treatments for different stages. The only chance for a cure is surgery. That’s why I went with the surgery. I remember one doctor in South Carolina, I was going over procedures with her, she said, are you wanting to live or die? I said, I want to live. She said then you go with David Sugarbaker. If you’re in Stage I, he’s the best to go with.
I wasn’t looking anywhere else at that time. If you can be with someone who’s surgically respected, that’s the route to follow. There are other things to take into consideration. The choice is up to the individual. If somebody is in their 70s and they go for the surgery, it can be a very hard surgery. It is a hard surgery, regardless. It’s going to take you at least a year to get over it. At age 75, some people feel it’s not worth it. I don’t know what I would do. At my age, it was an easy call. I don’t know at what point I would cut it off and say, “No, that’s it.”
You have to find out what stage you’re in. There are many good doctors that know this disease. They’re in New York and Los Angeles, but you have to get in touch with a doctor who knows the disease and can diagnose your stage properly. From there, you start looking at what kind of treatments are available. I believe that Dr. Sugarbaker’s trial will be a success. What happened with me is just a fluke. I think he’s on the right track with this.
There are so many different kinds of trials available. If this one doesn’t work for me, I’m going to look at some of them. I’ve got copies of many of them that are going on in the states. I’ve contacted the researchers and I’ve asked, “If this doesn’t work, does this eliminate me from your trial?” They all said no, so the doors aren’t closed.
events_moderator I’ve read a bit about your having beaten mesothelioma once. Can you tell us about those people you’ve encountered who’ve provided help and support for you along the way?
Belle_McGuckin Sure. There was a man who was a customs official, who was very stern at the desk. I handed him our passports, and he said in a stern voice, “Where are you from?” I said, “Winnipeg.” He asked, “Where are you going?” I said, “Boston.” “Purpose of your journey?” he asked. I said, “Medical.” He said, “Who’s the medical?” and I said “Me.” Then he said, “What’s wrong with you?”
I was thinking, “What business is it of his?” But I decided to be as blunt as he was, so I told him, “I have a very rare cancer and I’m hoping one of your doctors can save my life.” His whole face just changed.
Then he said: “I get off work very soon. When I get off work, I’m going straight home. I’m a Christian, and I’m going to be praying for you all night. You’ll be fine.” My mother and I started to cry.
There’s another time I can recall: when I did have the operation, my first roommate in the hospital was this older lady by name of Rose. Rose was so blunt! When she came in from her operation, she was quite high on her prescribed “dope,” and she pulled the curtains aside and said, “I’m Rose. Who are you? What are you in for?” Rose was 82.
I said to her, “I had a lung removed from cancer.” “Oh,” she said, “My sister had that done well over 60 years ago. She was the first person in the U.S. to have that done. She was going to die, and the doctor said to my sister, ‘I heard about this radical operation that allows us to take out the lung. If you want me to, I’ll do it.’ My sister was 18 years old, she had the operation done, and she lived for 60-something years.” So Rose told me, “Don’t worry about it.” And Rose’s sister had her face on the cover of Life magazine (and they also published her story) that year, because she was the first in the states to have this operation done. She made history.
About the disease, it’s hard waking up every morning with this on your mind. That part is difficult. It’s difficult on my family. I’m looking forward to a day when I can get up when the first thing that comes into my mind is, “It’s snowing,” or, “It’s not snowing yet,” or, “It’s a lovely day here.”
In another instance, a friend of mine insisted I get these healing stones, so we went into a store and picked some up. The young clerk in the store tapped me on the back and said, “Are you okay?” There seems to be some kind of aura about you when you’re having a problem. He asked me, “Do you mind if I do something for you? It won’t hurt you. It will help you. Just carry on and shop and I’ll just do whatever I have to do.” I agreed, and he put himself into a deep concentrated trance. At the end, he said, “Thanks a lot, you’re all right.”
There have been lots of stories like that. Little things. I’m always looking for them now, too.
events_moderator Thanks for sharing those stories with us, Belle. Going back to treatment information, what do you recommend for cancer pain? Do you practice visualization?
Belle_McGuckin I don’t know how to do that, though I would like to do something like visualization. Remember, I didn’t have any pain. I was on regular painkillers that anybody else would have, like Percocet or Tylenol. I’ve never really experienced any pain.
events_moderator How cooperative are insurance companies in helping cover the medical costs related to mesothelioma?
Belle_McGuckin The idea here is that I was very lucky to get somebody that listened to my case. Because mesothelioma is considered to have no treatment available for it, most physicians just say, “There’s nothing to be done.” In the states, if payment for treatment was approved, they would probably pay for it up to 75 percent, but normally, there’s nothing available, no. Not for this disease.
I know people that have mesothelioma, and even when they first found out they had it, they couldn’t get treatment because they didn’t have the money (unless they sold the house and everything else). A bunch of my cousins in Northern Ireland got together and started a fund over there. They sent me a check and lots and lots of cards. I feel very sorry for people that don’t have that kind of support.
I met a young girl at the cancer clinic and she had three children. The youngest was 7 months old. She’s just now starting to go chemo and radiation through (she’s got advanced lung cancer), and her husband left her. She’s now on welfare, getting no money from him. She was just bubbly! I couldn’t help thinking “She must be on happy pills!” I asked her, “Who takes care of your kids?” She said, “My mom. My mom moved in.” She doesn’t sound like she has anybody else to help her.
events_moderator What are the treatment options for mesothelioma?
Belle_McGuckin The only option that I tried went hand in hand with the surgery. That was the heated chemo wash I mentioned in which the doctor took out everything before he sewed me up. There’s nothing else that I’ve tried. I didn’t feel I needed it, because of the family and the people around me. This time it’s going to take a bit more. I had a friend over last night, and he said, “I thought you had it beat.”
events_moderator It’s interesting that you haven’t been in any clinic support groups — that you’ve primarily leaned on self-sustenance and family support.
Belle_McGuckin I’ve already had friends calling me up in tears. It is difficult when you’re the patient and you have people calling and crying to you, and you have to try and console them. I can see it’s going to be a bit worse, emotionally, this time around.
events_moderator There seem to be a lot of great alternative resources available.
Belle_McGuckin I knew about them and I was aware of them, but I didn’t really look into them.
Belle_McGuckin When I was first diagnosed, the first three days were hell. I didn’t eat or anything. And that’s when my friend found Jonathan David on the Internet. That’s why we’re talking today. I never met the man, but he seems to be really, really nice. This time when I found out, it was a blow because I was sure that the cancer was gone. It’s taken a little bit longer to get out of it, but I’ve been talking to a few very positive people — people that want to speak to me. I’ve been talking to friends that have gone through similar things, so that’s my next step.
events_moderator How is mesothelioma diagnosed, and how has the diagnosis of mesothelioma affected your life?
Belle_McGuckin I started off with a bit of a cough. Then, I went to doctor, he gave me antibiotics, and it didn’t go away. So then, I got a chest X-ray, and I was sent to a respiratory specialist. Next, I went to a surgeon who did an open chest biopsy. It was sent to pathology, and it took five days. They didn’t believe the diagnosis, so they sent it out to somebody else. It still came back the same. In Manitoba, Canada, there are only five to six cases reported annually, and they’ve always been with older men in their 60s and 70s. So to get a female in her 40s with mesothelioma, they couldn’t believe it. The first thing you have to do is get it diagnosed properly.
events_moderator And you have no cancer history in your family?
events_moderator And about the diagnosis, how did it affect your life? What changes or adjustments did you have to make?
Belle_McGuckin Physically, we have a family-run garden center, which we’re closing down now. Neither my mom nor I want to continue that. That will be nice, because it’s always been a big strain to us. Psychologically, I do a lot of thinking.
events_moderator There’ve been no physical changes?
Belle_McGuckin No. There haven’t been any.
events_moderator What advice can you give other people diagnosed with mesothelioma?
Belle_McGuckin Make sure that mesothelioma is really what you have. Then, find out what stage you’re in. Go to a doctor who knows what they’re doing. In Boston, they see five or six cases in a week. There’s a big difference. Next, when you find out what stage you’re in, you can see what options are available.
events_moderator What can complicate mesothelioma? Can anything complicate it?
Belle_McGuckin No. Nothing, from what I know. It’s only asbestos-related.
events_moderator What research is being done into mesothelioma treatment?
Belle_McGuckin There’s not much out there. Dr. Sugarbaker is not the only one researching it, however. Many other people are. Almost all of it is being done in the states. With almost every patient I spoke to, when I asked, “How did you find Dr. Sugarbaker?” they said, “Through the Internet.”
events_moderator Does Dr. Sugarbaker have his own web page?
Belle_McGuckin Yes, he does. His name is Dr. David Sugarbaker, and his page is easily located on the Internet via any major search engine.
events_moderator Are you in touch with people from your hometown that you had the fundraiser with? Are they familiar with your status now?
Belle_McGuckin Oh, yes. One of the nurses that I am with today, she was at the party. Not many of those people are a lot familiar with my current status involved. I was just diagnosed 10 days ago. I haven’t gotten around to telling everybody. I hear there are people telling other people.
events_moderator What will occur in the hospital in the next few days? What’s the process?
Belle_McGuckin I get out tomorrow. It’s just a 24-hour thing. Every three weeks I have to come into hospital and do this. After third round, they will give me chest X-ray and CAT scan to see if there’s a difference. If there’s no difference, then I’ll start going into the trials in the states. If there is a difference, then they can keep me on, but I don’t know for how long.
events_moderator Have you been in touch with Dr. Sugarbaker about the second diagnosis?
Belle_McGuckin Yes. I haven’t been in close touch with him, because he was really busy the day I was down there. It was actually one of his colleagues that gave me the news. I didn’t really see him.
events_moderator Well, we wish you the best of luck, Belle. Take good care, and we thank you for joining us.
Belle_McGuckin Thank you.