How We Almost Missed My Breast Cancer

Warning: I want to apologize for writing so much about my health issues lately. I know it likely comes across that I am nothing but the sum of my health problems. This is definitely not the case. I face surgery again on December 8th, 2009 and I am feeling the nerves I always do before an operation. Writing helps me to cope with those nerves. Until now, I have taken to writing about them on paper but with discovering AC, I have decided to write about them on here so that maybe it can help someone who is in a similar situation.

I have written extensively on the subject of having Cowden Syndrome. I have not written much about how close it was the syndrome was never found. This lack of knowledge may not have been a big deal, but the breast cancer Cowden's sometimes leads women to have increased risk of was already in my body before we knew I had the cancer. When it was ultimately found, sixty percent of one breast was involved while seventy percent of the other had stage 0 breast cancer. Six months would have given the DCIS (stage 0 breast cancer) enough time to metastasize and become ductal carcinoma. Ductal carcinoma and Ductal carcinoma in situ are two different ball games. DCIS is very curable--a mastectomy usually takes care of it. Those with Ductal Carcinoma are not so lucky.

I am a former patient of St. Jude Children's Research Hospital. I credit them with saving my life as my family could not afford the expense of chemotherapy when I had a recurrence. For years, I thought I owed my entire life to the hospital. I believed this so much so that I joined a program to prepare college students for possible careers at the hospital. In the six weeks of working there, eight people in the department to which I was assigned accessed my medical records without my knowing. I spoke with who was supposed to be my mentor who told me he was sure everyone in the department did that because they were looking for people to be involved in the after completion of therapy clinic studies. He did not realize I could see the dates my information was accessed and I knew several of those who accessed it had not been at the hospital for a long length of time at all. I am no fool. It is human nature and if I had been in the other shoes, I likely would have been curious as well but the lie about it and being as much as forced to leave as an employee burned me. Several people said I had a lawsuit case but no matter what I could never have done that. I know firsthand that most of the monies donated to the hospital go to the patients and to deny any child of the right to live like I had been given would be too much. This situation angered me but not as much as what was about to follow.

Perhaps it was coincidence that a few months later the decision to let me go from the hospital as a patient occurred, perhaps not. When a patient reaches ten years off therapy, they are typically dismissed from the hospital. In 2001, I had been in remission for eight years. I was told they could no longer treat me because of my age but knew for a fact others who were older than I was were being treated. The reason this is relevant is because it was the excuse for not doing genetic testing. I was told to keep in touch with my ACT (after completion of therapy) doctor about the gene study situation being done at a different hospital. I did my part and ultimately she stopped emailing me. I gave it no more thought for three years, until I found an operating report that mentioned the possibility of Cowden Syndrome. I looked up what it was online and there was my health history in a nutshell.

I have to give my doctors who did not realize this was genetic some credit. They did know my grandfather died of colon cancer at a young age but they did not know he had the hamaratoma/wart growths on his face that were burned off and grew back. They did not have the whole story but they had enough of it because when I finally saw a geneticist and was tested in 2007 he wondered why it had not been obvious to the doctors there. My mom has her own theory that I was costing too much money with all my problems so they dismissed me a little early and did not test me because of obligation to take care of me.

I do not know if the circumstances of my no longer being a patient had anything to do with working there, money it took to keep me healthy, or any of that but they dropped the ball on not diagnosing the Cowden's. Let me clarify though that no one is perfect-not even those at a world renowned children's hospital.

When I read what Cowden Syndrome was, I took to the Internet to find information from people who had the same problem. A support group was open on MSN back then and it helped greatly. I was told from those who also have the PTEN mutation I probably had it even before my test came back and they told me what to expect. It was the first time I felt like I truly belonged somewhere.

After a very lengthy ordeal in finding a geneticist and getting diagnosed, I chose to have a mastectomy and that was when the cancer was found. There was no clear sign of it being there. If someone had not thought to write "check her for colon polyps and she may have Cowden Syndrome" on a dictation from an operating report in 2002 (no this was not a St. Jude physician) and I had not been proactive in looking for a doctor who would refer me to a geneticist and then ignored those who said I should not have the mastectomy done, I would be sitting here very sick from chemotherapy or worse, not sitting here at all.

This is why so many of my articles involving health are saying to rely on instinct. Those who do not have medical insurance or who have Medicaid are often denied the same care as those who have insurance. I watched a friend of my brother's die because he did not have the money to pay medical bills to go to the doctor. He had cancer and waited until it was too late. When cancer has been in my body every time, deep down I have known it. I believe your body sends signs to you when things are not right. Listen to them. I was called a hypochondriac for years before the breast cancer was found. Yes, maybe I am a bit more in tune to my body and therefore a hypochondriac but it is better to be a hypochondriac and alive than someone who does not pay enough attention and is dead. I have begged for scans before when something has felt wrong because being on Medicaid makes it a necessity to beg at times. I do not want to have the same end as my brother's friend if it can be helped. Two small children depend on me.

I have such mixed feelings right now. This surgery will be my first since the surprise breast cancer and I would be lying if I did not say I am worried cancer will be hiding inside my uterus (I am having a partial hysterectomy). I have underwent a normal endometrial biopsy-well, what is normal for me but the mammogram prior to my breast cancer was normal for me as well.

Sometimes I wonder if I will ever get living with the fear of cancer and living life to enjoy it down. I guess it will always be a work in progress.