Lung Cancer Videos - Amy L



Watch as Amy L takes us through her journey with lung cancer.

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Video Transcription

Coping with Change

Suggestions for coping with changes due to cancer: I think you have to have a network, a support network. What Next is a great support network for a lot of people. I've been lucky in that my family has been a wonderful support network. We've unfortunately had a lot of cancer in my family, so I have relatives who have been able to support me and answer questions.

Diagnosis

My primary diagnosis is Stage 3A adenocarcinoma lung cancer, and that diagnosis kind of progressed. First they said, probably Stage 1, because the tumor was very small, 2.6 centimeters by 2.1. Then, with a PET scan, they saw that there was also a lymph node in the lobe of the lung, which was also reactive, and that put me at Stage 2. When they did my surgery and they did a lobectomy and removed the lower lobe of my left lung, it turned out that the tumor had spread some threads to the chest wall, and so they had to remove part of the chest wall as well, and that put me at Stage 3A adenocarcinoma lung cancer.

Financial and Out of Pocket Costs

How does cancer affect your life economically? That's probably the biggest one. I do work full time. I am the sole support of my family, and now it's mostly medical bills. I sat down one day, I had five bills I had to send out, I wrote the checks, I put them in the envelopes and then I looked at them. All five were medical bills. Even with decent insurance, and I think I have decent insurance, the medical bills are stressful. You'll hit your out of pocket very quickly. Chemo was expensive. It was about 5,000 dollars. The hospital bill alone for my surgery was over 55,000 dollars, so I got capped at my out of pocket, and then you need to call and talk payment plan, unless you've got a lot more money than I do sitting in the bank. But everybody works with you, or at least they have with me, and I just make my payments every month. Last week, I paid off my original medical bills from the surgery a year ago, and I paid off the radiation, and so now the bills I have are this year's medical bills, which, with PET scans and CT scans, and all of that, you know, again, I went through my out of pocket and all you can do is just make payments. That's all I can do.

Fear of Cancer

To people who have a fear of cancer, I say that's pretty normal. I think we all fear cancer. Those of us who have been diagnosed, fear of a recurrence. We fear dying of it. Best advice I can give, is to do what you feel up to doing. Again, I was very lucky, I didn't feel that sick, except for taking one sick day after the fourth round of chemo,; I got up and I went to work, and I came home, and I was a Mom to my son who was still at home, and I had to do laundry, and I had to do dishes, and you do what you feel up to doing. Reality, everybody dies. At some point, you know it, that's the reality, and the best thing you can do is live it as much as you feel up to doing.

Gifts for Cancer Patients

Appropriate gifts. When I had my surgery, things that people did for me that were a wonderful help: I had friends who sent over meals or who came to my home and cooked meals and put them up in my freezer, so that I didn't have to worry about cooking for my children and myself. My stepmother did it, my friends did it. I had some friends who knitted chemo caps, because we weren't sure if I would lose my hair after chemotherapy. I did not lose my hair. As you can see, it's getting long. It did thin. The hats were a wonderful gift. I think the best gift that anybody did for me, was my one friend Lois, who decided I would not go to chemotherapy alone. And every chemo session, and I went two Thursdays out of every three weeks, Lois came with me. And my day one of chemo was an all day affair, it was an eight and nine hour day because there were so many chemo drugs and so many anti-nausea drugs, and hydration. And Lois would be there with me, and we would bring coolers of snacks and drinks, and she would get it for me if I needed something, and she kept me company, and she made sure that I wasn't there alone. I think that, even above meals, hats, scarves, whatever, that was the best gift. I also had housecleaning through the American Cancer Society, once a month for four months. That was a wonderful thing, too, because even when I felt so sick that I couldn't get up, they came and they cleaned my house, and it smelled clean, and it looked clean, and it just made me feel better.

Life Before Cancer

Before I experienced my first symptoms of adenocarcinoma lung cancer, I didn’t have any symptoms. Four years or so before I was diagnosed, I had a small thing that showed up on an X-ray in my lung. I went through CT scans. I went through a PET scan. It came up non-reactive, and so we decided that was a granuloma and I tracked it at six months. I tracked it a year. It wasn’t doing anything. So we didn’t worry about it. Three, four years later, I went to the doctor because I had a summer flu that just wouldn’t quit. And it sounded like maybe it was pneumonia and they took more X-rays. And we found that that little tiny .9-centimeter thing, which we had thought was not cancer was three times the size. So I went through a CT scan and a PET scan and that was when they told me I had cancer. So I didn’t really have any symptoms that I could say, “Oh, I had this or I had that.” Looking back, there were probably some symptoms, shortness of breath. But I’d been a smoker for over 35 years. At one point, I lost my voice for a while, and again, you know, you mark it off to smoking. So I didn’t really have any symptoms. So it really came as a surprise to me and to my family doctor.

Cancer Limitations

Before my adenocarcinoma lung cancer, things I used to do, I was much more active physically, I was in much better physical shape, and I miss that but you know I've tried working out at home, and I start with a shortness of breath, I don't think that one's in the cards for me. Aside from that, I really, there's not a lot that I don't do now that I did before. I even this past summer had a community garden and just to go out and work in the garden and grow these healthy, fresh vegetables, I think was a good thing and assuming I'm well next summer I'll do it again. Other than that I really haven't had to give up too many activities.

Lowest Point

My lowest emotional point of this was after I was diagnosed, I had to find a way to tell my children, and tell my parents that I had lung cancer. And that was really hard. And for two weeks, I went through my life as normally as possible while I worked out how to do that. Once I told them, it was easier, and now I guess the only real low points are every three months when I have a scan. I get scared. Some friends on one forum call it scansiety. The best thing you can do is have your support network and talk to them. They will understand those fears. And of course, this is what we fear the most is my cancer will come back, I will be sick, I will be in pain. Those are my fears. Yeah.

Metastases

As far as we can tell so far, my lung cancer is not metastatic. It doesn't seem to have spread anywhere else. They did remove four lymph nodes from the median stinum, up the center of between the ribcage, and they all tested negative, as did the borders of the part of the chest wall that they removed. This is now a year past my surgery and almost a year past my chemo, and so far I continue to be cancer-free. We hope it stays that way.

Perspective on Life

My perspective on life? I don't know that having cancer changed it that much. My dad is a cancer survivor, he had pancreatic cancer. The five year survival rate for that is four percent. He's at seven years. He's 81 years old; I have great respect for him, and I hope to be as stubborn as he is, and not give in to cancer. But I think I've known all along, nobody lives forever. I had a brother who died of cancer when he was two, my dad is a survivor, I hope that I will be a survivor. So again, I don't think my perspective on life really changed all that much.

Place of Care

I was treated at Waukesha Memorial Hospital here in Wisconsin. Waukesha Memorial is a regional cancer center, so I really feel that I got very good treatment there. My surgeon was through there, my oncologist was with a different medical group, so I would go elsewhere for the chemo, and then the radiation was back at the hospital.

Questions for Doctor

If you have lung cancer, things you might want to ask your doctor, things I didn't think to ask my surgeon? I never asked about the incision, where it would be, what it would feel like, how I would feel when I woke up, and really, when I woke up, I thought I'd had a stroke. I couldn't move my left arm. I didn't know that that was simply from the rather sizable incision under my left arm, and having a port. My oncologist briefly mentioned a port, kind of blew it off, because I was only having four rounds of chemo. Talk to your doctor about a port. I had all of my chemo IV in the veins in my arm and it does bad things to your veins. By the third round, fourth round, the nurses would have to stick me three and four times till they could find a vein that it would work. If I had known afterwards, or actually, before, that that's what it would be like, I would have asked that they put a port in. I think that a port makes it much easier, and then you have use of your hands, you don't mess up all of your veins. I think those are the two biggest things that I wish I had asked, that I would encourage you to ask.

Quotes

Quotes, songs, thoughts, slogans, I really don't have any. I consider myself very lucky. I never really felt sick. I never felt like I couldn't deal with my life. I worked full time through all of my cancer treatment. I continue to work full time now. I'm not a big one on songs or slogans.

Side Effects

My lobectomy, side effects? Really, except that there was the healing from the surgery, there were not a lot. When I woke up from the surgery, I couldn't move my left arm, and I got really scared. I thought I'd had a stroke or something, because I never thought to ask anything about the incision or the surgery. I have a rather sizable incision scar below my left arm, which is where they went in to remove the lobe of my lung. Side effects from all that, there was some shortness of breath, of course, but as I healed, the remaining lobe of my left lung did grow to take up that space, and so, for the most part, I'm pretty good. Side effects of chemo, of course are cumulative, so after the first round of chemo, I went Black Friday shopping, the day after Thanksgiving. By the fourth round of chemo, I was pretty sick, and actually took a sick day from my job. I did work full time through all the chemo, and really, the only real side effects were the nausea. So I had a whole variety of anti-nausea medications. And depending on if it worked, I'd stop there. If one didn't work, I then went on to the second. Side effects from radiation, for the most part, I had none. I went, I had my five minutes on the table for the radiation. I would go home. Towards the end, my back was very itchy, and I had my son look at it, and I have a rather sizable radiation burn on my back. It's about the size of a lunch plate. So I did require some medicated creams. They put lidocaine in it to make that more comfortable. But aside from the burn and some peeling, again, really no side effects. They told me it would make me tired, like when you've been at the beach all day, and for the most part, I didn't even experience that. I would work all day, leave a little early, go to the hospital, have my radiation, and then I went home.

Conditions and Treatments

Right now, I do consider my adenocarcinoma lung cancer to be in complete remission, which makes me happy. I'm a single mom with two kids, and they are relying on me to still be around. Right now they're both in college. I have a long way to go until they're ready to be on their own.

Symptoms

Once they did the X-ray and they saw that there was this thing that was now two and a half, or so, centimeters, I did get sent for a CT scan with contrast, and that showed that there was a thing. And at that point, my doctor said, "Well, you know, let's go straight to a biopsy." So they did a biopsy and the local hospital, which is a regional cancer center, they thought it was cancer, weren't really sure, so they sent it to the Mayo Clinic. Mayo is supposed to know everything, and after nine days, that did come back as adenocarcinoma non-small cell lung cancer.

Treatment Decisions

Decisions and treatment options? I went with what my doctors told me. I had been referred to a medical oncologist and he referred me to a thoracic surgeon. And the treatment plan that they worked up was first the lobectomy to remove the effected lobe of my left lung. And then four rounds of chemotherapy and then 20-- 28 doses of radiation. In addition to that, I qualified for a clinical trial for a drug called Avastin. So that was added to my chemo.

WhatNext

I found WhatNext, I think, through the American Cancer Society. I think it has been a great site for support, for asking questions, and sometimes for being able to offer answers to other people in a similar situation. The features I use, mostly it's the question boards. Sometimes I have questions, sometimes I have an experience that can help answer other people's questions. I do admit, for the most part, I'm not on there every day. Again, I work full time, so it's really just living my life.

Patient Doctor Relationship

Relationships with my doctors. I was originally diagnosed by my family doctor, and I have a very good relationship with him. I can call him and ask him questions, and I'm very happy with the relationship I have with him. He referred me to an oncologist who came with very high recommendations. Unfortunately that was not my experience. I was with him for ten months through all of my chemo. And really I never felt like I was important to him. All of his other patients were more important. I would ask questions, he kind of blew me off. And I wish that I had interviewed, if you will, more oncologists and found one that was really more in line with how I wanted to be treated. After ten months I did change oncologists, and I'm much happier with my current oncologist. I think it's really important to interview the doctor, if you will. This is a very intimate relationship, and in many cases it can be a life or death relationship. I think it's real important to be happy with how you're treated. You need to feel like you can ask questions. And if your doctor doesn't have time to answer your questions, you need to get other referrals. After ten months with my oncologist I became very unhappy with the continued lack of concern. I think I was nothing more than a set of test results to him. So I called my surgeon, and I called my family doctor, and I asked for different referrals. And I was referred to a new oncologist who I'm much happier with. My radiation oncologist was wonderful. He answered my questions, he took time with me, he didn't make me feel as though my questions were silly, or stupid, or inconsequential. So again, you need to talk to these doctors and then decide if that's a doctor you're happy with. I think it's really the same as when you're looking for a job, you know, is this some place I can be happy?