The appointment

Post op day 8

I met today with my oncologist. She is a very sweet doctor with a calming demeanor. I guess it is necessary to have such a calming demeanor when part of your job is to give bad news. She went over the pathology. Her voice was like a babbling creek running over the stones of my illness. My tumor was over three times the size that was estimated. While this is not uncommon for estimates to be off, it was my tumor and how common the underestimation didn’t matter. But yet it was hard to be upset as my oncologist lulled me with her voice. My lymph nodes were still clean but pathology identified the tumor invading into the wall of a lymph canal or blood vessel. The technical term is lymphovascular invasion (LVI). LVI prognosis is difficult to judge. It depends on if the cancer went through the entire wall of the vessel or not and if cancer cells broke off into the blood stream or the lymph. Lymphovascular invasion is a scary term. But it is treatable.

My oncologist discussed the new chemotherapy regimen with me and my husband. It needs to be a more aggressive treatment due to the possible breaking off of cancer cells into the blood stream or lymph. You can be lymphnode negative and LVI positive. The prognosis is slightly worse than LVI negative alone but it is important to know that chemotherapy medications are for precisely that possibility- the possibility that there are other cancer cells in your body that haven’t been picked up yet. Even though, as a doctor, my head tells me this, my emotions are in a free fall. So I go back to the ever soothing voice of my oncologist as she tells me about the new medications that will be used and the change in schedule for my chemo. There will be two additional medications added and the infusion will take a longer time both in hours for the infusion and weeks I will be getting this regimen of chemo.

My initial plan was to go to work in the morning on Fridays and go for chemo in the afternoon. My Fridays are pretty easy. I run a clinic until noon and have meetings and administrative work in the afternoon. My meetings could be changed to phone meetings and I could log into the hospital computer system since I will still be at the hospital. Easy to fit in chemo into my work. See patients in the morning and run over and get hooked up for chemo in the afternoon. Now this will change. My Friday clinics are a specialty clinic. I am the only doctor of my specialty that does these evaluations in my state. There are  doctors of other specialties that will see patients, but if the question is more appropriate for my specialty, there is only me. As you might imagine, any decrease in my ability to see patients in this clinic is significant. I am not sure which I was more upset by- the worsening of my treatment and prognosis or the decline in my ability to see my patients. We all have responsibilities and the ability to adequately take care of our responsibilities is a part of what makes us tick. One of my responsibilities is this clinic. My cutting down on the amount of patients I can see is not only detrimental to the patients waiting to see me, but also to my finding ways to function as normal as possible with my looming illness. Looking for bright spots in an otherwise ominous cavern is essential for helping with coping. This change is difficult to swallow. I try now to replay the melodic sounds of my oncologist as I remember her words. Today, reality is creeping in too much. I am ill. I have cancer. My life will be different. This cancer is constantly changing my definition of me. I need to find a way to be happy with my new definition and a way to feel good. I should have recorded my oncologist and just play her voice on an endless loop. But for now, I write and hope to find solace in the expression of my thoughts. Tomorrow is a new day.

My Diagnosis

 

I am diagnosed with Infiltrating Ductal Carcinoma, stage 1, grade 2 triple positive. I say this now as if it is my name, “Hi, I am infiltrating ductal carcinoma stage1, grade 2, triple positive. What’s your name?” I feel marked by this and forever changed. It started quite innocently with a screening mammogram. I am among the women who know I should get a screening mammogram but just keep putting it off. I take care of my family, my patients, everyone else first and leave this screening stuff for another day. I became fearful of the demise of the Affordable Care Act (ACA). Currently, under the ACA preventative care such as screening mammograms are free and do not need a referral from your physician. I thought I needed to get my free mammogram done now before the option was gone. Screening mammogram done without another thought.

The thickening

Two weeks after I get a call from the nurse coordinator. There was a “thickening” found on my mammogram. A “thickening” for peri menopausal women is usually nothing. It is not uncommon for women to have changes in their tissue that is completely benign. The thought of cancer still not registering in my brain. The radiologist was going to compare it to my previous mammogram I had few years before. I knew my previous mammogram was perfectly normal. So the call a few weeks later for a diagnostic mammogram and biopsy was no surprise.

The biopsy

The biopsy day came without much fan fare. My head was still in the place of ” I am old, this is normal “. I nonchalantly changed to the gown and was ready for my boob smashing diagnostic mammogram then to be escorted to the ultrasound room for the biopsy. The tech at the ultra sound room described the prep with first finding the suspicious area then marking it and then prepping with iodine. The radiologist would then come in and do the biopsy. She described the biopsy to make loud noise each time a sample is taken but I would have local anesthesia and shouldn’t feel pain. Ok, no biggy- find, mark , clean, numb, click click biopsy done. The sound of the biopsy instrument is actually really loud. Not so much a click but more of a bang. It is more of an ominous sound. With each bang, the realization of what I was doing hit me with each progressive bang: bang, bang bang, bang bang bang. 12 bangs in all. During this time I decided to take a peak at the ultrasound image as the doctor took the biopsy. On the screen I saw it – the thickening. The thickening was more of a mass. A mass that was clearly very suspicious for cancer and not just normal breast tissue change. I knew what I didn’t want to know. I knew I had cancer. I tried to push the thought away to patiently wait for the actual diagnosis but it loomed over me like a suffocating dark presence that I couldn’t see but only feel.

The call

A week later I got the call. I was at work while I was sitting in my office with my team. I run a clinic one day a week with a team of other specialists. I saw the number come up on my phone and I froze. I knew who was calling. I trembled as I picked up the phone, trying to sound professional and casual in front of my team as if this was an everyday call that doctors get. My voice did not betray me but my body did. My knees wobbled as I heard the nurse on the other end, “Doctor it is positive” As I write this, a shiver comes through me still. The words echoing in my head- it is positive. Just as she was saying this my primary care doctor (PMD) texted me that the results were back and positive. Confirmed by the written text- I had cancer. Cancer was never something I ever thought would be associated with me. Cancer was something I helped others deal with. Cancer was not something I would have to deal with. But I do have cancer and I didn’t know what to do. I was lost. Then the next text came from my PMD saying to come see her and we would work this out.

The choice

Deciding on who is going to treat your cancer is a very personal one. So much stress comes from the diagnosis and it is important to feel safe and cared for by your team. My internist recommend her breast guy and my ob/gyn recommended my his mother’s breast guy. But in the end I decided to go with the female surgeon at my hospital. There were a couple of reasons I chose to go with a different doctor than who my internist and my ob/gyn recommended. First she is a female. I felt more comfortable with a female. She was younger than the male doctors but she had on her hospital description oncoplastic reconstruction (reconstruction for cancer patients) and the others did not. Also she was in the brand new building next to my building which made it very easy to get to appointments. And finally, I wanted a female who would understand the importance of the breast in the way a female did and not a male since the relationship with the breast is different with males and females. In medical school I did a rotation doing breast augmentation and reconstruction surgery. The male surgeon was horrendous with his attitude to his patients. The misogyny was pronounced. While I am sure he was an outlier and not representative of male surgeons who do breast surgery, it still stuck with me and influenced my decision.

The team

I met with my team shortly after the diagnosis. It consisted of my surgeon, my radiation oncologist, my oncologist, my breast coordinator, and some lanky resident. My breast coordinator asked if I wanted to see all the doctors at once for the exam or one by one. I decided to go with them all at once. So the team lined up in front of me like a firing squad each one taking their turn in asking questions. Then came the exam. My gown was opened and each one stood in line to mash my breast for the exam. Weird and surreal is all I can say. One by one mashing my breast and turning to the others saying, “no it is not palpable “. I eyed the resident and gave him the look that there was no way he was getting in line. He stepped back.

I got dressed and was escorted to a room for the consultations. First my surgeon came in. She discussed the ins and outs of the surgery. My tumor was small and hadn’t spread to the nodes. I was a good candidate for a lumpectomy and then she showed me the BioZorb implant that would be for my reconstruction at the time of the lumpectomy. The BioZorb would be fitted in the area that the breast tissue would be removed. It comes in multiple sizes to fill in the hole. The BioZorb also has titanium markers on it for the radiation oncologist to be able to accurately target the radiation treatment. Totally cool. I would leave surgery with an intact breast looking similar to before. Love that!!!

Next came the radiation oncologist. He talked about the treatments, blah blah, my mind went numb after he said “5 days a week for ….” Radiation is usually recommended for women with lumpectomy it cuts the reoccurrence rate down drastically. There are some reasons that radiation cannot be done and that will be discussed in the treatment section.

Finally, my oncologist came in. I knew I had estrogen and progesterone positive markers. This means that there are receptors on my cancer cells that are for estrogen and progesterone. This helps in having a treatment that can target my cancer cells. Tamoxifen is the treatment of choice for premenopausal women. It is a pill that you take for 5- 10 years depending on your oncologists recommendation. Side effects are similar to menopause. I was ready to discuss that and be done. Prognosis according to the cancer society is now at 100% recovery 5 and 10 years out. However, I discovered I am also Her2 positive. Her2 is a biomarker on cancer cells that doesn’t have as good of a prognosis. The cells with Her2 are more aggressive. The good news is it can be targeted with chemotherapy but the bad news is it is more aggressive. The news stunned me. I had read the report and some how missed that. She went over the chemotherapy protocol. All I heard was hair loss. Hair loss!!! Now my cancer took on a face I didn’t want. I didn’t want to be reminded daily of my cancer. I wanted a simple snip snip some radiation and a pill for several years not the go in for nausea producing, hair losing kind of treatment. I am still in shock. My chemo starts in May. Time will tell how I handle this. My name is Infiltrating Ductal Carcinoma stage 1, grade 2, triple positive. I look forward to the day that my name will be Survivor.