Details and Diagnosis

Susan:

After Shannon's discovery of the lump in her breast, appointments were made and the quest was on to find out what she had going on in her body.

On 4/2/2009, Shannon had an appointment with her OB/GYN, for a physical exam with Dr. P. Dr. P. told Shannon that he also felt that the lump was most likely a cyst. He gave her a referral to a Radiology Center for an ultrasound followed by a mammogram if the lump was found to be solid.

Shannon went to the Radiology Center on 4/6/2009. The technician performed a sonogram on Shannon and after that she met with the radiologist. The radiologist began his talk with Shannon by showing her the cyst on the screen and reassuring her that she would be fine. He talked to her for a while and then he stopped talking. He paused, looking at her record jacket and her name, comparing it to the name on the film. At this point the Radiologist realized that he was looking at another patients results. My poor daughter was experiencing incompetence once again. The radiologist apologized, looked at her sonogram and then ordered a mammogram. Shannon knew at this point that the lump was solid.

On 4/7/2009, Shannon got a call from Dr. P. asking her to pick up her films from the Radiology Center and take them to Anne Arundel Breast Center. Shannon was then scheduled for an ultrasound core biopsy on 4/20/2009.

On 4/22/2009, Shannon took a call that rocked her world. She was told by Dr. P. that the lump in her breast was the cancer-- Melanoma. Dr. P. referred Shannon for an appointment with an Oncology surgeon, Dr. G on 4/23/2009. I was to go with her for this appointment.

Let me stop here for a moment to tell you how we felt. I cannot speak for Shannon but I can tell you this-- when she called to tell me that she had melanoma, I immediately knew how grave this situation was. Shannon and I both wept a little on the phone and I asked her if Ben was with her. She said no-- she didn't really want anyone with her because all anyone could do is stare at her and feel sorry for her. I said OK and that I loved her and hung up.

I left my work day early and came home, calling Sean along the way and breaking the sad news to him. Once he got home we both had long, heartbroken cries. I cried for a good long while and then I sat up in the bed and thought- what am I doing? I went to get Sean and said- let's go to her, she needs us. Let's stop on the way and buy her flowers, pajamas, stuffed animals, her favorite candy and anything else we can find to cheer her. And so that is what we did. We entered a sad, quiet house and brought along the biggest ray of hope and sunshine that we could muster at this point.

We ordered pizza as a family and ate together. We prayed together as a family. Beginning the long journey of faith we would all follow. We loved on Shannon and Ben and let them know they had our support and our continued prayers. Thinking back, I remember a smile that crossed my baby girls face that night. A smile that said, "I love you mom, dad and Christopher, I love you Ben." She could feel our prayers already.

Next post- meeting Dr. G. and surgeries and referrals to a medical oncologist.

Hard Lessons

Susan:

February 20, 2009, Shannon and I both waited in the office of Dr. B. the dermatologist. When Dr. B. entered the exam room he began to prepare to excise the atypical spitzoid neoplasm. The very first thing I noticed about Dr. B is he did not like me there. I could actually feel him. And I promise you I was not enacting the Mason DNA or using the stink eye. I was being my most professional well behaved self. Dr B. would not look me in the eye. I introduced myself, forcing an introduction, making him look at me.

I asked Dr. B. if I could ask some questions. I had a small hand written note- which I still have to this day. I began by telling Dr. B. that I had research done for me and - he interrupted me- saying that I could ask the questions but most likely what I had read was not true. I found this an odd statement for any physician to make but went ahead and asked my questions. I told Dr. B. that I had read it was very difficult to differentiate between an atypical spitz and melanoma. He told me that it was "definitely not melanoma", using emphatic hand and arm gestures, swinging them back and forth to make his point. I asked him about follow up, stating that I had read that sometimes a sentinel lymph node biopsy is recommended. He told me no follow up was necessary. He said he would see Shannon in one year and that he was only doing this final excision to prevent the spitz from going crazy in her body in 10-15 years.

Shannon did not want me to stay in the room with her for the excision. She told me that the doctor was rough and it would upset me as she cried out. I respected her wishes and went to the waiting room feeling nauseous in the pit of my stomach. Shannon told me later that the nurses who attended to her that day told her that if she had to come back she should make an appointment with Dr. B's associate and not him.

I felt so uncomfortable with the treatment that my daughter received during this visit that as we left I told Shannon that she needed to get her lab reports and seek a second opinion. I want to add a thought here for some of you. You might be thinking, "Why in the world was this girl even going to a doctor such as this?" It seems like an obvious question to ask, sitting in the seat of being a mature and more experienced person. The more mature, experienced patient would recognize poor treatment and find another physician. Dear reader, what you must remember is this: Shannon was only 25, she had grown up in good health, she had no experience with physicians. But she was learning. She was learning one hard lesson after another.

Life got busy again for Shannon. She had more traveling to do for work. She did not have a chance to go back to get her lab reports. Though later she would have to get them.

Having to get ones lab reports should not be something a patient has to do, but as I said before, I really felt uncomfortable about the treatment and care Shannon received.  But we never dreamed of what would come next.

Facing Mortality for the First Time

Susan:

The following is a short word document we found on Shannon's computer.  It is the beginning of the book she was going to write.

Shannon:

"On April 22nd, 2008, I faced my mortality at the age of 25. I started my journey with a series of medical comedy of errors. Although comedy is not really a good description of where those errors could have led or... what the real issue finally revealed. I was 25, healthy, young, married and living my life in relative carefree comfort. But let me go back to where it all really started and share with you the hard lessons learned."

"In December of 2007, I went to the dermatologist for a skin exam. I had specific moles that I had questions about and wanted to have removed. One was on my chest visible sometimes in my decolletage, one was on my right side on my ribcage, and one on my thigh. The dermatologist looked at only those three specific moles and informed me that they all looked benign. I explained that the one on my ribcage had gotten tender in the past year and so he decided to biopsy that one and I paid out of pocket for the one on my thigh to be removed.

Once the results came back from the lab, the physicians office called me and told me that it came back as something called an Atypical Spitzoid Neoplasm. I, of course, had no idea what this meant so I asked if that was cancerous. The office person on the phone assured me that it wasn't cancerous, but it could turn cancerous so they wanted to make sure they removed all of it. So I headed back in for my excision or removal of the rest of the mole. The procedure basically involves the dermatologist cutting away a football shaped amount of skin around the mole and then stitching you together."

"After this first excision doubts about my dermatologist skills started to creep in. When I was in the office and getting numbed the needle was jabbed in ruthlessly and without any thought towards gentleness or comfort for the patient. My stitches to say the least were not the neatest or the most closely spaced. However, life was moving fast and I moved with it, attending a work training in Texas. While in Texas, I removed my own stitches in the hotel room unable to locate a minute clinic or nurse that could do it for me. My last day there I received a phone call from the dermatologists office informing me that I needed to come back again for yet another excision. They explained that although they had cut quite a chunk of skin away that the bad cells were still visible near the edges which meant they needed to cut more way to be on the safe side.

At this point I called in my cavalry, my mom. She works for the County library and with a love of books and a reference and research team at her finger tips she set about finding out all she could about Atypical Spitzoid Neoplasms."

Susan:

Tomorrow I will write about this time from my point of view.