CORINNE COLE

CORINNE’S COLONDAR BIO

After having symptoms for months with no diagnosis, Corinne went directly to a gastroenterologist who was so concerned that he skipped lunch the next day to give her a sigmoidoscopy. After finding a tumor and diagnosing her with stage III rectal cancer, doctors recommended radiation and laparoscopic surgery. Corinne discussed the effects of radiation on her fertility and when she learned that it would cause early menopause, she decided to have only chemotherapy before and after surgery.

Corinne keeps a busy schedule as she works hard toward her goals. Corinne has had to deal with a recurrence, but she has learned to occasionally stop and smell the roses.

CORINNE’S STORY AS TOLD BY CORINNE

I was diagnosed in November 2004 when I was 22, but looking back there were a lot of little things that should have tipped me off earlier. Once you’ve been diagnosed you realize a lot of things from the past, so I do reflect on things like that.

There were a lot of interesting things that happened to me that are not medically or scientifically proven.  I was losing my hair for a very long time, starting in December 2002, two years before I was even diagnosed. I had very long, very thick hair and it started coming out in clumps; it wasn’t making bald spots but it was thinning overall. I finally went to a doctor in March of 2003 and I remembered after I was diagnosed that I had also complained of constipation to her.  She tested me for a thyroid problem because common side effects of underactive thyroid are hair loss, lethargy and weight gain. She told me I probably had IBS and everything was because of lifestyle changes. She really didn’t pay attention to it and it wasn’t that big of a deal at that time, but now I feel sure that’s when it really started.

After the tests she told me that I had a thyroid problem and put me on medication. I was on it for about five or six months and I took myself off of it because there was no difference in how I felt.  My tests were coming back okay but everything felt the same, so I went to a dermatologist and an endocrinologist. They both tested me and told me it was stress from moving and grad school. They told me that I wouldn’t lose my hair if I would relax. Even when I told the dermatologist everything, she didn’t even want to look at my blood tests. It had been over a year and half at this point, but nobody would listen to me and take me seriously. After four doctors telling you that it’s just stress, you start to accept it. There’s no evidence that hair loss is linked to colon cancer. I’ve asked my doctors and they won’t say that there’s anything linking the two, but as soon as I had surgery and the cancer was physically removed from my body, my hair was growing back.  Even on the chemo, my hair came back. I firmly believe that it was my body’s way of telling me that something was wrong.

I kept saying that this isn’t right, but nobody would listen to me. I don’t think it was nutrition because I was eating well and it had been happening for so long, even before I was having any other symptoms. I think the cancer was stress on my body and that is how my body was responding. That’s what I firmly believe; and it’s fine now. I was diagnosed with a thyroid problem after I finished chemo, and I’m back on the medication, but my hair is back now and I haven’t had a problem with it.

So retrospectively, I was losing my hair and was complaining of constipation at the time, so I think that’s when it started to snowball. I didn’t have any serious symptoms until over a year later. You don’t think of those things at the time, but after I was diagnosed, I started to think about it and look back. It all made sense and the pieces started to come together. My biggest symptom was rectal bleeding, and I had been bleeding for a very long time. I remember seeing blood on my stool my freshman year in college. It was a very little bit and didn’t happen again for a very long time, probably another year. In retrospect, that was probably the tumor starting to bleed, but I didn’t have pain or anything like that. It became a little more frequent, maybe once every couple of months and increased from there. I still had no pain, but I mentioned it to my mom and I mentioned it to my doctor. My mom had hemorrhoids, so we thought that’s what it was. The doctor said it was hemorrhoids too, and I had never had them so I didn’t realize there is usually pain with them.

The bleeding got to be more and more frequent and eventually got so bad that blood would come out when I passed gas and every time I went to the bathroom. I couldn’t control it. I got stomach pains and I couldn’t control when I would go to the bathroom and constipation.

I knew that something wasn’t right, and I knew that I needed to go to the doctor. I was in Boston at school and I didn’t want to go alone, so I made an appointment for when I went home at Thanksgiving. At this point, I made an appointment to see a gastroenterologist because I didn’t need a referral. I went in two days before Thanksgiving with my mom and I sat there and told him my symptoms. He said that it sounded like it could be IBS or something like that. He literally sat there and told me, “I’m not worried about colon cancer. You’re too young for colon cancer. But the bleeding isn’t consistent with IBS so I want to take a look.” He didn’t like the bleeding, so thank God I was bleeding. He knew I was going back to school and wanted to do it before I left, so he gave up his lunch the next day and told the desk to schedule me for a sigmoidoscopy, and I went home and did the prep.

I was fully awake for the whole procedure and he said, “Ooh what is that? Is that a hemorrhoid? Is that a polyp?” I was thinking, great. He must have known right away what it was, but he didn’t say anything right away. I went back to school and my mom called me the Tuesday after Thanksgiving. I gave the doctor permission to talk to her and I guess the doctor called and told her, but she didn’t tell me on the phone. They all knew it was cancer, but she didn’t tell me because I was alone at school in Boston. She just told me that the tests were inconclusive and I needed another test; they had scheduled me for a colonoscopy and a CT scan. I went home Wednesday after classes and I was drinking my prep stuff to get ready for the colonoscopy. I just said to my parents, “Am I okay?” because I kind of knew that I wasn’t. Then they told me and after that, it was just a whirlwind.

I had been taking my grad school classes and as part of my fellowship.  I had also been teaching. There were only two weeks left in the semester, and I was expecting to go home and do these tests and come back on Monday. I told my professor that I would be back barring an emergency. Of course at that point we didn’t really know what we were going to do because it was up in the air. I e-mailed my professor and he called back and talked to my mom on Saturday because I was in the shower, and he said not to worry and that they would figure something out. I didn’t know if I was returning to school that semester or the next semester, but the professor I taught for talked to my other professors and they agreed to waive my finals and grade me on the work I had done so far. I didn’t have to take incompletes and they also put my fellowship on hold. They were wonderful with working with me. I wound up going back for one day to get my clothes and say a few things to my students, but I didn’t go back to school. When I went back, he already told me my grades and that I didn’t have to take finals or anything. He was incredible; and he continues to be. When I went back to school in September 2005, I only had one semester left of school and one semester left on my fellowship. He talked to me and said “We can support you for a year, so if you want to take a reduced course load and only teach one class instead of two, you can graduate in May and have time to recover.” They have been absolutely amazing.

So the next Thursday I went for the colonoscopy and it was clean except for the original spot. I went to a general surgeon but he refused to touch me.  No surgeon in the tri-county area would touch me because I was so young and they never saw this before. They referred me to New York City, so we went down and met with doctors there. They wanted to shrink my tumor before surgery by doing one month of radiation and one month of chemo. I was going to do that treatment at home because it would be every day. I met with the oncologist and then the radiation oncologist, and that’s where my world got turned upside down. They have to tell you all the risks of radiation, and I knew there would be a risk of decreased fertility, but we weren’t prepared for what they told us that day. The page they gave me was horrible; it listed everything from being infertile to things I thought were much worse. Because my tumor was up against my vaginal wall, there might be a hole and I might go the bathroom through my vagina. There was a chance that intercourse would be impossible or very painful. There was the chance that I would fry my uterus and I wouldn’t even be able to use a surrogate mother.

Not that I was okay with not being able to have children, but at least there are alternatives to that. The thing that really upset me the most was being 22 and going into menopause – I wasn’t willing to risk spending the rest of my life like that, on hormones. I asked about different courses of action like pinning my ovaries up, but the radiation oncologist was pretty brutal through all if it. It was upsetting at the time, but now I’m glad that he was because if he hadn’t laid it all out like that, I probably wouldn’t have pursued other opinions the way I did.

After that, we went back to my original surgeon and she called the doctor in New York again. She was our liaison and so she called and asked if what they had told me was true. She called that night and told me that the risks were correct but that she wanted me to go back to New York and meet with another oncologist who she worked with. They thought that there may be alternatives and that maybe I could just get chemo. The next day, Friday, was my birthday. I was going to have chemo either way, so I had surgery that morning to put my port in, and then we drove down to meet with the new oncologist. He made a special appointment to see me and he said that he was confident that I could do stronger chemo for a longer time. He thought that it would shrink the tumor and that it wouldn’t make a big difference in my survival rates to skip radiation. He said that there isn’t really a difference in the treatments and that radiation isn’t really proven. Originally they were going to put me on just 5FU and leucovorin and then I would have surgery. Now they decided to put me on 5FU, Leucovorin, Oxaliplatin and Erbitux and thought it would shrink it down just as much as the radiation. My doctors didn’t discuss clinical trials at all; I didn’t even realize until later that they really existed. My original oncologist in New York City is very big on clinical trials and he’s in charge of a lot of trials, but the clinical trials were never brought up for me. Nobody’s said, but my guess is that they wanted to make sure that I was getting the drugs I needed; they didn’t want to chance it that I wasn’t getting everything.

They explained that a lot of these were newer drugs, and we decided to do that route. There was still an issue of fertility because the drugs were so new they didn’t really know how they would affect me. My doctor was really wonderful, working with me to try to find fertility specialists and to try to find ways to freeze eggs. I ended up talking to a doctor on the phone, but he didn’t really think it would affect me, so for that and various reasons we decided not to freeze eggs or anything.

I started chemo December 22; I went in every week to get the 5FU, Leucovorin and Oxaliplatin with a pump and the next week I would get just Erbitux. I did two months of treatment and I went to see the surgeon the beginning of February, but he looked and didn’t think that the tumor was small enough, so I went back onto chemo for another month. I suffered side effects all along, but that last month it really hit me – I lost a lot more weight and had diarrhea all the time. In March I went to see him again and because of the effects of the chemo and my health, they thought it could have shrunk some more so they did the surgery.

I had laparoscopic surgery to remove part of my rectum on March 16. They originally thought that the tumor was on the vaginal wall and that there were no positive lymph nodes, so I was stage II. They told me that during surgery they would have to remove part of my vaginal wall so there would be a hole and they would have to give me a temporary ileostomy so that everything could heal without infection. During surgery they saw that the tumor hadn’t gone through, so it was better than they expected and much less invasive than they thought. But when pathology came back, I had five out of 17 lymph nodes positive. So instead of it being stage II it was stage IIIC, which definitely came as a shock and was very upsetting. I left the hospital after a week and I had a month break to recuperate from surgery.

Before I started chemo again, because the cancer was more advanced than they thought and some other things they found on pathology, the discussion came up again about radiation. My surgeon was fabulous; he knew that legally he to tell me about it, but he also knew the extent that we had gone to avoid it in the first place. He told me the pros and cons, and he talked to my oncologist and agreed to seek the opinions of other surgeons. Again they decided that I could just do a stronger chemo regimen for four months to avoid radiation again.

I started chemo again on April 13 and had the same drugs, but this time added Avastin. I was on everything to make sure that everything was killed off dead, and to avoid having to do radiation. At the time, one of my doctors said that they were treating me like a stage IV patient in terms of the chemo. My doctors were all fabulous in working with me and giving me all these options and looking out for my best quality of life. I did four months of that chemo and lost a lot of weight again. I got pretty sick, but I made it through and I finished my treatments. My last sit-down treatment was August 5 and the pump was removed August 7, 2005.

I had lots of issues with my insurance not wanting to pay the medical bills for my chemo. The original problem was that I was given drugs not approved for my diagnosis of stage III rectal cancer. They would not pay for the anything that I had during the week that I got Erbitux, which was the biggest problem because I was on it for so long. They wouldn’t pay for premeds, chemo time, or the Erbitux itself – they wouldn’t pay for anything because Erbitux wasn’t approved as a first-ling drug for stage III.  You are supposed to have been on another chemo and failed before they give you Erbitux, so they wouldn’t pay for it because I hadn’t taken something else first; I was using it for a first-line therapy. Then I went on Avastin, and they wouldn’t pay for that either because it wasn’t approved for any stage III treatment at all, only for stage IV.

When we originally met with the oncologist, he told us that there would be problems with the insurance with Erbitux, but he said that he had fought before and won and he would be willing to go to bat for us. At that point we weren’t worried because we would deal with it later. I’m a dependent on my parents’ insurance; I’m over 21 so the bills are mine and they come to me, but I’m on their insurance as a student. When it first happened, we didn’t talk about financial responsibility; my parents said that they would sell the house to cure my cancer. When the bills started mounting up, we thought about how to deal with it, but it never came to selling the house.

As a student, I had no income; the only income I was getting was a check from my fellowship and now I had no income at all. I hadn’t been working long enough to collect disability, so nothing applied to me. We didn’t get a lot of information about it, and we never got the same story from two different people. But it didn’t matter because when we got all the pieces together, I wasn’t really eligible for anything because it was such a unique situation. I was a student so I was kind of a dependent, but not really. I hadn’t been working and I was only disabled 9 months, not 12 months. Everything was in my name because I was legal, I was over 21 so the bills didn’t have to go under my parents’ names. We asked several people that they didn’t use my parents’ income and assets, so it was all on me.

I probably had $300,000 to 400,000 in bills coming in my name, and that wasn’t the total.  It was just what the insurance wouldn’t pay for the Erbitux and Avastin. Then we started getting denials from the insurance company. It takes them a while to bill, then we got a denial, then we appealed them and then they told us that we didn’t have any more appeals. My mom kept appealing and appealing and got the doctors involved and we got several reviews, but they said that my treatment was just not protocol, it wasn’t standard. With my doctors, we argued that the standard patient isn’t a 22 year-old, so you can’t go by the textbook. They didn’t listen to that; they just kept denying it and denying it. At that point, we got the drug companies involved too – Bristol Myers for the Erbitux and Genentech for the Avastin. While I was waiting to see if I would get the drugs for free from the companies, I couldn’t work because then I wouldn’t qualify for any financial assistance. I couldn’t get a job and all of my money had to be hidden. They said that the appeal process for the drug companies could take years, so I was thinking that I couldn’t get a job and I didn’t know what to do. I did qualify for the drug-giving programs. There was an issue with Bristol Myers because I had already received the drug and they changed the program after I started, so I don’t know how they considered me. It was a big mess but luckily we got approval in a couple of months and I would end up being gifted the drugs from both companies.  I wound up not needing to be given the drugs, but I got them.

It was really my mom advocating on my behalf, writing the letters, telling the doctors what they needed to do and telling them to say this or that when the insurance companies called. There was a social worker who was assigned to my case, but she wasn’t really helpful. It was my mom who was relentless; she was on the phone with the drug reps, she kept asking for appeals, and she kept writing letters to everyone.  We don’t know how it happened, but in the end I was given an administrative override from the insurance company; my mom thinks that she must have asked for this but she’s not sure. Somebody in administration overrode my appeals and said that they should pay all of my bills. It’s not done, but we got a letter in the mail right before Christmas, and that was my Christmas present. It all happened because of my mom, but I don’t know how it happened or why. God was looking down on us one day because I would have been in debt for the rest of my life, even if they forgave part of the debt. At one point we figured it out that even if I paid $100 a month I would have had to pay for something crazy like 416 years. I thank God every day because it wasn’t just a toll on me. They were my bills but it was a toll on my entire family, so I’m so grateful that they were eventually paid.