'Was up most of the night last night. Thinking it is time to live today like it is my last.'
That was the night I found the lump in my right breast. I spent most of the rest of the night reviewing with God the impact breast cancer would have, if I had it. I thought about the impact it would have on my kids, on my family, on me, on my finances, on my priorities, on my perspectives about life. I talked to God about all of those things. I thought at that point it was just an exercise in readjusting priorities and realigning focus. I guess it was a bit more than that.
Since the lump was still there the next day, I couldn't write it off to a middle of the night panic episode. With no health insurance the prospect of the probability of a mammogram was stressful and disturbing. Since the financial issues concerning the discovery of cancer was one of the things I covered extensively the night of March 13 it was not as frightening as it would have been had I not already made decisions in that arena.
I scheduled an appointment with my doctor to have it checked out. The doctor confirmed my findings and sent me for a mammogram of the right breast. The mammogram picked up 2 cysts and a hard nodule as well as innumerable micro-calcifications. The Doctor who spoke with me after the mammogram recommended biopsying the densest area of micro-calcifications rather than either the cyst or nodule. He said the micro-calcifications were, to him, the most alarming. Cysts are common and mine looked benign. He suspected the hard nodule was a cyst that had shriveled but still had debris inside.
Kristie, my best friend, who lives in Texas, with the encouragement of her husband, flew to California to be with me for the biopsy and stayed for over a week so she could be with me when I got the results. The biopsy was Friday, April 8, 2011. While at work Monday morning, I got a call from my doctors office requesting that I come in as soon as possible to discuss the results. I went in immediately. Kristie went with me.
The biopsy results, April 11, 2011, were Ductal Carcinoma in Situ (DCIS) which although any diagnosis of cancer is scary, is not a bad kind to have. DCIS is slow growing, non-invasive, non-metastasizing cancer. So it is easy to deal with medically. The difficulty is that DCIS does have the potential to become another type of breast cancer that is invasive and would metastasize.
My first appointment after receiving the news was with the Michelle at the Hearst Cancer Resource Center. During that appointment I broke down in tears several times for the simple reason that due to her experience, knowledge, resources and kindness, I knew I was not alone in the process. I do know I have family and friends who love and support me, so I would not be alone. But finding my way through the medical, informational and emotional maze was not something any of us have a map for. Michelle does. She talked with me first about a Medi-cal program for breast cancer patients that covers everything from the date of diagnosis to reconstruction. She let me know that my next step would be to meet with a surgeon and since I had a vague idea of who I would like to meet with, she called and scheduled the appointment. She has relationship with the various Doctor's offices and in this case spoke with Stacy at Dr. Tidik's office. Stacy scheduled an appointment for me while talking to Michelle to apply for the emergency Medi-cal program. Stacy has become my most potent advocate. She is dynamic and is able to make medical mountains move.
Michelle gave me so much information about available financial assistance, support programs, services that are available during different stages of the process. When the Cancer Center was founded, they first investigated all services available in this area to cancer patients so they did not duplicate any but instead filled in any gaps. They formed relationships with each of the available existing services so they are the best place to go for any needs arising from a cancer diagnosis.
For my first appointment with the surgeon, my Mom and Dad came into town to be with me. My Mom and Tawna (amazing friend from school) went with me to hear the assessment. Their 'hearing' is different than mine and helps tremendously with reassessing after the appointment.
Dr. Tidik filled in a lot of information I did not have regarding DCIS, the steps of the process of dealing with it and the basic outline of information gathering I am currently in the midst of. The options for dealing with DCIS are either a lumpectomy (breast conserving surgery) with radiation or a mastectomy with or without reconstruction. Recovery rates vary based on the degree of surgery. He said he had a suspicion based on the mammogram that a lumpectomy might not be an option for me due to the amount and distribution of the DCIS in the lateral aspect of the breast. Stacy set up an appointment for me with a Radiation Oncologist and scheduled me for an MRI to get a more detailed picture of the activity in the breast as well as investigating the left side. Dr Tidik recommended the MRI with the hope of ruling out an underlying cancer of a different kind than DCIS.
Yesterday I went back to see Dr. Tidik for the results of the MRI. Once again, my mom provided immeasurable support by driving all the way here just for the appointment (and decided to stay the week). The information he gave me was this: breast conserving surgery is not really an option. Due to the amount of DCIS, the result would be cosmetically unacceptable. The MRI did show some increased uptake in the auxiliary lymph nodes on the right. It also showed 2-3 nodules on the left side. Both of these are concerning but Dr. Tidik did say the MRI is notorious for turning up things that turn out to be nothing but must be investigated none-the-less.
Most of us are familiar with Stages of cancer as a way of assessing the seriousness of a cancer diagnosis. Statistical survival rates go down as the stage goes up. The stages of breast cancer depend primarily on several factors and the combination of those factors. From what I have read and researched, those factors seems to be: 1. the size of the tumor 2. the containment within certain areas and the cancers speed of growth and ability to move beyond that area 3. lymph node involvement indicating cancer cells present in the lymph fluid. From the lymph nodes cancer cells are able to travel to different areas of the body. and 4. metastasis - growth of cancer cells in another area of the body.
As I mentioned before, DCIS is considered a stage 0 or stage 1 cancer. The survival rate for DCIS only is virtually 100%.
The concern with the MRI findings is the possible lymph node involvement which would probably indicate an underlying, non-DCIS cancer, and the nodes in the left breast, indicating possible already existing metastasis.
If either of those possibilities is a reality, the main change in treatment would be the need for chemotherapy and radiation following surgery. I have an ultrasound and biopsies of the right auxiliary lymph nodes and the nodules in the left breast scheduled for thursday. The hope is that the ultrasound shows nothing definitive, so an ultrasound biopsy would not be an option. A biopsy will still be done but it would need to be an MRI guided biopsy which is more complicated since the use of metal is not an option. If the ultrasound does show clear areas, the biopsies will be ultrasound guided. I will be getting the results of those biopsies next Tuesday at Dr. Tidik's office. A single mastectomy will still be an option if it is only DCIS. In the mean time, Stacy has made contact with a Medical Oncologist who I will be meeting with to discuss chemotherapy. And I will be setting up and appointment with a plastic surgeon to discuss my options for reconstruction.
As you can tell by the length of this post, a lot is going on. My house has fallen into disarray and I need to figure out a way to focus in on school for the next 2 1/2 -3 weeks so I can complete my classes. I can't quite answer the question about how I am doing because everything seems to be in a state of fluctuation. I can tell you each time someone is kind or compassionate or checks on me, I have a little more strength.
If you have any questions about any of this, please feel free to ask. I did include as much information as I could but there are some gaps in my knowledge and I didn't post nearly everything.
much love and gratitude