The years 2001-2007 were not dramatic for my health. I was in college until 2003 and applied to be a part of the St. Jude Children Research Hospital professional oncology education program. Being in an environment where the fear of cancer had built up over the years, made me unable to perform at the level I should have performed. Physical recovery had been such an issue that I had not dealt with my emotional recovery.
I continued to have surgeries for lumps in 2001 and 2002. By choice, I avoided the doctor in 2003 because of a strong desire to become a mother. In the ten months between my son’s birth and my daughter’s conception, I underwent a mammogram and some testing but no surgeries. While pregnant with my daughter, I found an operating report note from 2002 that had somehow escaped my notice. The report was very interesting.
The cause of my many cysts/lumps/tumors was never explained to me as I am unsure anyone knew what was the cause. A genetic test was suggested before I left St. Jude hospital but because I was no longer a child and in their age range it was not done. The alumni doctor told me she would get back to me with an appointment to see a geneticist at another hospital and for almost two years I kept emailing and asking her to help. I eventually gave up and moved on with life and my kids then I found this report from that time period in 2005.
Whoever wrote the report knew genetic conditions very well. It was suggested that if I had colon polyps, and I did, (St. Jude hospital knew I had colon polyps) then a diagnosis of Cowden Syndrome needed to be entertained. I will be fair in saying my doctors at St. Jude hospital asked if there was a family history of people like me and there was not. Cowden Syndrome can be spontaneous as can any genetic condition. A genetic test should have been done.
When I read the word Cowden Syndrome, I went to the Internet. I am not a very good writer so it is difficult for me to put into words what I felt when I looked at the symptoms and almost every one of them fit me perfectly. For years, I had felt like a freak and an outcast. I thought I was the only person in the world who grew lumps and bumps like I do. At the time I learned about Cowden Syndrome, a support group existed and it was wonderful speaking with people who were just like me.
I immediately went in search for a doctor to refer me to a geneticist. The problem with being a patient at one of the most renowned medical hospitals in the world is that it isn’t believed they can make mistakes. One doctor claimed there was no way I had all those problems and had never been genetically tested. Another doctor thought that because I did not have the mental retardation component that is sometimes but not always seen, I could not have the condition. The third doctor listened to me and whether he believed I had been genetically tested previously was not something he mentioned. He set it up for the referral department to find me an appointment and be checked out. I demanded it because I then had two children who were nothing more than babies and had 50-50 odds of having my same problems. After a few month period, the lady in the referral department finally made an appointment with the only adult geneticist in the state. It took almost two years to get in to see him.
My son had an appointment with a geneticist before I did. The geneticist was in the same town mine was and said there was no reason to test my little boy until I was tested and I agreed. He decided to do a cheek swab on me so that eight weeks later when I finally met my geneticist the answer would be in.
At the age of 28, I began having bumps come up on my face and when the geneticist entered the room he looked fascinated at the bumps (these are a part of Cowden Syndrome). After seeing them and my thyroid scars he said he didn’t have to look at the report from the pathology because he knew it would show positive. He asked me how the doctors at St. Jude hospital could possibly have missed it. I did not give my opinion then or now and I will not. I am thankful for the chemotherapy that saved my life and I do not expect perfection but yes, there is some upset in my thoughts on this especially since I now have children who could have this same condition.
My geneticist went to retrieve the test results. He brought the paper into the room and I saw all kinds of conditions listed in black that had the words neg. for negative out beside them. One of the conditions was in red and it was the one we both knew would be positive. I had the PTEN mutation in Cowden Syndrome. My cell overgrowth was caused from there not being enough of the protein that controls cell death.
Learning what I suspected was the truth brought the strangest emotions. I felt grief because prior to this point I had hope cancer would no longer be a part of my life but then knew it likely would be (I just did not understand how soon), confusion because it could have been caught years before as a test was available when I was within St Jude hospital’s patient age limits, and happiness. I no longer felt quite as much like a monster. Only one in 250,000 people have Cowden Syndrome but others do have it.
When the test came back positive for Cowden’s, I elected to have a bilateral mastectomy. My odds of breast cancer were 35-50 percent for the rest of my life due to atypical hyperplasia in 2001 and now Cowden Syndrome. Though my mammogram looked normal (for me), I knew cancer cells could hide. I was very afraid because within the two years previously, I had began to be able to secrete blood from one nipple. Because it could never be done in office, I was dismissed and told to come back when it could. I felt the need to have surgery to clear out what was in there because a part of me just knew.
Surgery was scheduled for February 28, 2008. The last thing I said to my husband was, “what if something is hiding in there?” One week later while still at home attached to drainage tubes, my doctor called to tell me we made the right decision because early cancer cells were found in pathology.
Emotionally this was a huge setback for me that I have yet to recover from. For so many years, I had been afraid to live life in fear of the dysgerminoma coming back. I accepted it being gone and had a family and a life. Physically the surgery was the most painful I have experienced. I cannot compare it with childbirth because my labor with Owen stalled at 4 cm and Hannah was a planned C-section but I can compare it with Pitocin induced contractions up until that point and it hurt worse. The drains caused a constant burning sensation and the skin stretchers having been placed inside open wounds were a nightmare. These contraptions were so tight I could not breathe and morphine did not begin to cover the pain. The first two nights following the mastectomy I wanted to die because I could not imagine a pain any worse than that and at least it would be over with quickly.
Treatment for ductal carcinoma in situ (my diagnosis that is also known as DCIS) is a mastectomy. Some doctors treat with chemotherapy, especially when the grade is a 3-the most abnormal looking cells and closest to the invasive ones. Grade 1 means cells look abnormal but are closer to looking like normal cells. I had grades 1-3 with 2 being the most dominant. All grades were throughout both breasts at 60 percent and 70 percent.
Reconstruction was painful. It took three weeks for me to have an injection of saline into the skin stretchers because I had to keep the drains that long, Each injection felt as if it broke the incisions open again. I was happy going from my previous DDD cup to a B cup especially knowing the nipples we tried to save in my mastectomy had cancer cells in them. I was ready for implants and to be rid of all cancer cells.
Waking up from the mastectomy, I was protected somewhat from the psychological effect of no nipples or breasts. I had small mounds that were the skin stretchers. The implant surgery caused a relief of the physical pain from the stretchers but the emotional pain became uncontrollable. The loss of my nipples and gain of red gashes across my breasts was almost too much to bear. I felt like a monster. My medical coverage will not pay for nipples so I continue to adjust to my new body. It is difficult to be so reminded of mortality more of less constantly.
Physical recovery has been bizarre. I continue to have phantom pains throughout my breasts at times. The effect of the loss of breast tissue from under my arms took a lot of adapting to because it feels like I have nothing but deep pits there now. Dimpling and scarring were both complications of the surgery but due to my medical coverage, I cannot have it repaired. After almost two years, I finally feel fine physically on most days in regard to pain in my breasts but the emotional recovery has been hell.