I can’t stop myself
I am on research overload, but can’t seem to stop myself. I have had a strong feeling that I may have cancer since January. At that time I found a wonderful site, a site dedicated specifically to women under 40 facing breast cancer. I was immediately drawn to this group.http://www.youngsurvival.org I could not get enough, even in January before I even knew for sure I had cancer. I would read the bio’s of all the different women, read their symptoms, how it was found etc. There were several polls on this site one which included did your cancer hurt. Most doctors will tell you that cancer does not hurt, on this site however most women had pain relating to their tumor. That was how they found it. Finding this out from this site made me more determined to find out what was going on with me. I am still being told even after meeting with my surgeon last week, that the horrible pain I have been experiencing for over a year was in fact not related to my cancer. What????
Another thing that played a vital role in my being persistent with the doctors before my diagnosis was the fact that women under the age of 40 have very dense breast, which makes it very hard to detect. Several women on this board had ultra sounds or mammograms that missed the cancer.
I was given a ultra sound at the end of January. I did not sleep all night, the fear of what I knew they would find haunted me. After the tech finished up she left me alone to go show the radiologist. I waited and waited… I remember screaming in my head” come on already I am ready to hear the news, I already know I have it. ” About 10 minutes later when she came in to tell me it was normal and to follow up with my doctor, I think my mouth fell to the floor in shock. Normal??? What????
I should have felt great, good news it was normal and I am fine. But I did not feel relieved. Fast forward two weeks to a second opinion with my regular OBGYN. He looked me in the eyes and told me there was no way I had breast cancer. I only saw him last May and he checked me over and there was no lumps. I had a negative ultra sound and I was 31 with no family history. He told me this before he checked me out. I tried to tell him about a new lump I was feeling, trying to show him the area. He laid me down and barley felt me. The first Doctor who ordered my ultra sound felt me up so hard I was hurting for about four hours later. She felt something three weeks ago, enough to order a ultra sound. He finished quickly and again looked me straight in the eye and said he felt nothing, nothing at all. He said if it made me feel better to keep my apointment with the breast clinic in three months to follow up. He told me I had Fibrocystic breasts and that I will always have pain. I felt so defeated. But ok, I guess this is my life, I will always have pain even when putting on my seat belt, or hugging my kids.
Another couple of weeks passed and I could not get this pain out of my mind. It was consuming me, I was always researching, I found myself so attached to all of these strangers on this board. Their stories there lives just touched me. I felt like I was apart of the club in a weird way. The little voice never let up, the nagging feeling never left me.
Forrest was sick of hearing about my pain and told me to go back to the doctor. Another friend told me of a friend of hers who had breast cancer at 34. Ok, I will head back. I learned form the boards that a biopsy was the sure way of knowing if you had cancer or not. So I was ready to push for a biopsy.
Back to the breast clinic again, this time with a third doctor. That was March 10th. After an exam, he looked me straight into the eyes and told me this was definatly not breast cancer. He felt the area, but it was only fibrocystic breasts. He said that I was going to have to live with the pain, be checked in another three months. I could not hear this again, so I asked him to have a mammogram done, to get a baseline of the tissue. He told me that was not going to work since I was so young. So he said he would offer a biopsy instead, right there and then if this would ease my mind. I said yes, right now. He gave me two choices, a aspirated biopsy or a core biopsy. The core was more detailed and would get a few samples. Well of course I wanted the core biopsy.
He left and his assistant came in to prep the area. I was finally feeling releived, I will know for sure in a few days. It was very uncomftorable, but I was not about to complain. It took about 10 minutes from start to finish. After he was done, he looked me in the eyes again and said, for sure not cancer. He proceeded to hand me a breast cancer brochure telling me it was the law that he had to give me this after a biopsy. But it would not be needed. The results would come in 72 hours.
I left an for the first time since January felt calm. So the call came out of the blue, the next day March 11th. I was expecting to hear the results on Friday not Wed. The doctor had left a message, a happy message or trying to be positive in his voice. I called back and he asked me if I had a minute. Oh no.. I thought I was ready for this news, but I could feel my hands begin to slowly shake. “The biopsy was positive for cancer cells” he said very straight forward. “You are joking right?” I say as I continue to shake. “I had a feeling this was going to be the results but I still feel shocked” I say with my body beginning to shake. “He told me I would need to see a surgeon and a oncologist and told me I had DCIS and maybe more that is what I remember.
Today I am writing because I feel angry. I came across a couple of women who were diagnosed with DCIS and told it was stage 0 like me. It came back like often times DCIS does, when it did it spread to the liver and brain. They went from stage 0-4 like that. I began to cry when I went to a blog and the obituary was there. How could this be? I am being told that my cancer is non-invasive and so easy to cure. That is what these women were told too.
Today I am angry that I have to constantly fight for me! I continue to research because I am dealing with my life and my families lives. These women had a family and friends. I am learning now, about my disease, I am learning that it comes back in young women, I am learning that it often comes back invasive. I am also learning that with young women doctors must think outside of the box and treat more biologically then statistically.
I am angry today, because I did not want this. I have four beautiful kids and I want to be with them until I am old and gray… well maybe not gray but old and hip and highlighted! I am ready to meet with my second opinion tomorrow, carrying with me new facts and a new research study on DCIS, misdiagnosed when in fact it was invasive cancer.
I have been told by three different doctors to my face, looked at directly into my eyes that it was impossible for me to have breast cancer. So I am ready to look them into their face and say you are not God.. .you have no idea what my cancer can or can not do!
I not only want to rid myself of my current DCIS, but I don’t want a recurrence, but what I am learning in there is not way to know for sure if it will come back again. My odds now have doubled from the normal person that I will have BC yet again.
I am pushing for more than what the standard required for DCIS.. .because if I did not push for more with my doctors I would still have undiagnosed cancer in me. Who is to say they have not missed invasive already. I used to trust my doctors, let them treat me and no questions asked. I am no longer that way. I am my own advocate, and you should be as well.
I am angry today… angry that I have cancer, angry that an initial diagnosis of DCIS killed other women, because the invasive part was missed.