The Big “C.” It is the terrifying word that we all dread to hear…. Cancer…. This word can send chills down someone’s spine, make them feel like they are going to pass out, or have an overwhelming fear of panic are just some of the many reactions we may have. Growing up, I was surrounded by cancer in my home, so the “C” word was sadly not a foreign one. I saw both my mother and grandmother beat breast cancer and also witnessed my grandfather’s life be taken away from pancreatic cancer.
Both my mother and grandmother had a single mastectomy without reconstruction. From my recollection, at the time they both had breast cancer insurance companies were not covering reconstruction. I can remember looking at them and just seeing this scar and as a child it looked very scary and they did not look whole to me anymore without clothing. Of course, as a child I did not understand the magnitude to this disease and fully understand that losing one of their breasts saved their life.
As I continued to grow older, not only did I have a better understanding, but I also developed a deep fear of one day having to face this too. As I began my journey into womanhood, I learned how to give myself breast exams and would always go to my yearly gynecology appointment for them to examine me as well. To be proactive I went for a baseline mammogram at 35 years old (the standard to begin is 40). Insurance argued that I did not have to go again until 40 and my gynecologist at the time did not really advocate for me to continue and fight against insurance with a justification that I had this family history. And, I admit, I did not advocate for myself either. I went the following year thinking everything would be covered and it was not. It took months for my gynecologist to finally send an appeal to my insurance and of course took the insurance even more time to respond. At this point, the imaging center was fighting me to pay in full and threatened to send me to collections. I finally paid, I finally got reimbursed, and made the choice to not deal with this again until I was 40 years old.
Finally at 40, I went for my standard yearly mammogram, which for most, would be their first one. My imaging center always would give us the results in person, but that rule had changed about two months prior to me going (just my luck). I patiently waited for my results to come in through my portal and read that evening that they found a mass and classified it as a BI-RADS 0, meaning it needed to be investigated more and required a diagnostic mammogram and ultrasound. I called the moment the office opened the next day to schedule my follow up and was told that they were booked for a month. I called a few more times that day in hopes someone cancelled and I was able to go in the following week. I remember being so upset that they initially wanted me to wait a month for something that could potentially be serious. I just could not believe it and was absolutely disgusted and completely anxious. I had a bad feeling. In my gut, I just felt that something was wrong and wanted to go in even sooner. I probably called 40 more times that week in hopes I would be able to go in even sooner but it was to no avail.
That Monday morning came, and I went there alone. The techs performed the mammogram again targeting where the mass was and then did an ultrasound. Once the tech finished she told me she would be leaving momentarily to get the radiologist to discuss their findings. I can remember laying there, half dressed, silently crying and praying that it was nothing. The radiologist came in, used the ultrasound machine again and looked at me and said, “You have cancer.” EVERYTHING went silent in my head and I just looked at her. She grabbed onto my arm and said, “everything will be okay.” “It is small and it is treatable.” “You will probably only need a lumpectomy.” She then explained the next step which was a biopsy and scheduled me for one two days later. After she left, the ultrasound technician reminded me again and said “Remember, this is not only treatable but curable and that is a good thing.” I remember walking out of the imaging center in a daze, not really absorbing what just transpired. I called my best friend on the ride home and told her the news. She has always been one of my biggest support systems and I remember her confidently saying to me, “We will handle this and do whatever we need to do to make sure you are okay.” Once I got home, I saw my beautiful German Shepherd and began to cry with thoughts running through my head on how this will affect her if I am limited or in the worst-case scenario, I succumb to this disease. The tears were short lived because I was still in shock and trying to process what was actually happening in my life.
The day of the biopsy my best friend came with me. I had the same radiologist perform the biopsy. What I did notice that day was how the tune changed medically. Now, my health was important. I had a meeting with one of the nurses to set up an appointment for me to meet with a breast surgeon. I already knew that I would be getting a second and third opinion and was told how to sign my releases to eventually pick up all of my imaging and results. I received a call after my biopsy from a nurse practitioner to give me an earlier appointment for the breast surgeon. For the first time I actually heard someone reference mental health. She explained to me that she understood how anxiety provoking waiting could be and wanted me to see someone sooner. She even proactively set me up for genetic testing the following day. I actually had one that I already previously scheduled prior to all of this but it was two months away so I took the sooner appointment.
When I went to the genetic counselor she asked if I had ever thought about getting this done prior. And in that moment, I took advantage of it and began talking about the mental health side of it. I had explained to her that I knew someone who had gone for genetic testing and she had come back BRCA positive. Once she had received this result, she was then able to see oncologists without even having cancer, could choose if she wanted to electively get a hysterectomy and a mastectomy, and was able to be screened more frequently with a MRI and mammogram. This all may sound wonderful and is wonderful that you have these preventative options, but they can come with a price. I remember her talking about carrying guilt that she was sitting in an oncology office looking at people who currently had cancer. I remember her explaining the anxiety she felt when she was faced with the choice to remove her breasts and internal female organs. This was never discussed in depth prior pertaining to the mental health side and how you may feel about making these choices. And she struggled a lot with them. So, I explained this to the genetic counselor and told her that I felt like I was not mentally ready to make those choices when I was younger which was why I waited until I was 40 and felt that I was mentally mature enough and prepared to make those choices if needed. The genetic counselor was very receptive to what I had explained to her and then proceeded forward with testing. After my bloodwork was complete she asked me, “From one professional to another, can you give me some insight on how I could better help my patients from a mental health perspective.” Not only was that music to my ears but also to what I consider a calling.
Two days later, at 6:30pm on a Friday night, I was picking up a prescription from my psychiatrist that I had met with twice knowing that I would need the help of therapy and possible medication throughout this journey. (Yes, therapists see therapists too if needed.). The line was long so I decided to go through my email and saw an email stating that I had new results to review. Within seconds, my stomach dropped, I felt hot, and became jittery. I opened up my lab results and read invasive ductal carcinoma. I am not an oncologist, so to me the word invasive meant that the cancer had invaded my whole body. As this thought came into my head, I was visibly shaking in the middle of CVS surrounded by people. I quickly called my best friend and spoke as softly as I could telling her my diagnosis and how I was feeling. Within seconds she told me she was packing a bag and would be heading down to me. Fortunately, a friend of mine is a RN and works with an oncology doctor. As I called by best friend, I also sent a screen shot of the results to her and within minutes she called me. She told me that invasive did not mean it was everywhere and said that I had one of the most common breast cancers. She helped to calm me down and explained what the results meant and also explained that more results would be coming and this was only one of the puzzle pieces I needed to fully know what I was dealing with. In my head what that meant was more of a waiting game. I could not help but to think to myself what others do when they receive these same results on this dreadful portal on a Friday evening after the doctor offices are closed and do not have a friend in the medical field that is well versed in whatever medical condition they are diagnosed with. I could only imagine how I would have felt if I would have had to sit with this until Monday morning. (And doctors wonder why google becomes our best friend and/or our biggest enemy during these times.)
Monday came and I got a call from the nurse practitioner that I previously wrote was managing my case and she explained what I already knew and a little bit more to prepare me for the next set of results coming. After I got off of the phone, I called the hospital to begin collecting my records and was transferred four times to different locations. I called my best friend after in tears and explained that all of this was enough for me to handle and I could not handle having to call multiple places to simply get records. It just was not right. After I calmed down, I called two other facilities where I wanted to get second opinions from but they would not schedule me until they had the full pathology report in their hands, despite knowing that they would be there soon and to schedule after. Again, with the help of my friend, she was able to override this and get me an appointment scheduled at one of the places for the following week.
The full pathology report came in that Thursday which happened to be the same day that I had my first breast surgeon consultation with my original hospital. As I went to open my portal while waiting to see the doctor I immediately started to shake prior to even seeing the results. This apparently now became my body’s automatic response to results. I was estrogen and progesterone positive and HER 2 negative which was considered to be “good” in the breast cancer world. Minutes later I was in front of the doctor listening to him explain the results and was given the option of a mastectomy with medication and possible chemotherapy or a lumpectomy with mandatory radiation and medication and possible chemotherapy (which of course was dependent on more results and another waiting game.). The following week I saw two other breast surgeons and was given the same option by each of them.
I was now faced with making two big decisions: which doctor and hospital did I want to go to and which surgery was I choosing. I researched reconstruction options as I would need that if I chose the mastectomy and knew which reconstruction option I would choose. This reconstruction option involved cutting my stomach open straight across from one pelvic bone to the next and removing fat, tissue, and veins to create a “real” breast. The recovery for this type of surgery was the longest and hardest and would also leave the most scarring with also a high chance of not being able to spare the nipple. As a therapist, I of course included my mental health in this decision (something that none of the three breast surgeons ever discussed.). I asked myself how I thought I would react to see my body with all of these new scars and how I felt I would handle it. There was no right or wrong decision universally. I knew that I had to choose what was best for me as I knew myself the best opposed to listening to everyone’s’ opinions that varied across the board. Ultimately, I chose the lumpectomy and the hospital I felt most comfortable in.
I was scheduled to go for surgery in a little over two weeks. Prior to this I was scheduled to have a MRI, a CT scan (I requested this for my lungs since I was a former smoker and knew radiation would be close to my lungs) a seed placement (this helps the doctor remove the mass), and dye injection (which helps the doctor remove your lymph nodes for further testing.). The night before my surgery my best friend slept over and late at night about an hour before I had to stop eating, we decided to go to 7-11 and grab junk food. We always used to do this when we were kids…. We got home and ate all of the snacks we bought, laughing, and reminiscing about the past. And then something happened within me. I actually felt like myself for the first time in over a month. More importantly, I had finally felt my strength that had been masked by all of the anxiety I had been feeling. I woke up the next day ready to kick cancer’s butt. The surgery went well and I was in and out of the hospital within 6 hours. But…. I was back in the dreaded waiting game. Now I had to wait for the next round of tests that would determine if the cancer did indeed reach the lymph nodes which would change my Stage 1 cancer diagnosis and another score called on ONCO score which would also determine if I needed chemotherapy. Within one week. I found out my margins and lymph nodes were clear, which was excellent news. From there, I had to wait an additional week and half to receive my ONCO score. Thankfully that was low which meant I did not need any chemotherapy.
After all of my reports were back, it was time for me to meet with the radiologist and the oncologist. I was told I needed five rounds of radiation by the radiologist which is lower than others that I have known with breast cancer. The oncology appointment however did not go as smoothly. I was told standard drug for my type of breast cancer and being pre-menopausal is tamoxifan, however there was a complication with my Lupus medication so she said that I had to do something different. The second option involved a drug that women take who have breast cancer in menopause. But because I am not in menopause yet that drug would have to be coupled with a monthly shot for he next five years. There are side effects to all of the different medications ranging from hair loss to developing a new cancer, so of course, I was not happy with either option. But what threw me off was the doctor’s response to one of my concerns which was my hair thinning. When I brought up this concern her response was, well you have thick hair. Not only did I feel unheard but felt like the side effect was being justified because my hair is thick, so then I guess it is okay that it thins out, if it does. I know I should be grateful that my cancer is stage one and I am beyond grateful. But just because I am grateful does not mean I have no feelings or concerns.
Something I learned after that oncology visit is how important self-advocacy is. After the weekend, I called my rheumatologist to discuss my lupus meds and the complications. In addition I made an appointment with my retina specialist as the side effects from both medications can cause retina issues and that is why the combination was ruled out by my oncologist. After meeting with the eye doctor and rheumatologist I found out that both actually can cause two separate issues and with the low dose of lupus meds I am on combined with more frequent screening, they both felt I could be on it. If I would have just listened to the oncologist without further exploring with my other doctors I would have been put on the second option which is what I did not want. I cannot express enough how important it is to advocate and ask questions.
Recently, I am now struggling with a new issue: body image. I have been feeling a bit self-conscious because after the swelling went down in my breast I have noticed that it looks slightly different than the other. Radiation is also known to shrink your breast as well which is yet to come. I do have the option of getting a breast reduction and lift to even them out and will consider this once I am done with radiation and everything is settled. I am trying to not focus on my appearance but it is hard not too.
With the help of my psychiatrist and seeing him for weekly counseling along with my own personal journey, my anxiety is much more manageable, but still present. Now it comes in waves opposed to all day, everyday like it was. I have also noticed my delayed reaction to this diagnosis. For me, when I was diagnosed, outside of my anxiety, I was in fight mode. I did not process everything fully. I was too busy researching, scheduling appointments, and talking to many people including breast cancer survivors. It over two months since my initial diagnosis and I do not believe I have fully absorbed and processed that I have cancer and that this will now remain a part of me for the rest of my life. Slowly, I am working with myself and my psychiatrist to come to terms with this. If I could compare it to anything, it would be death. When a loved one dies, you are upset, but are very busy making arrangements, spreading the word, and everything else that comes with death. You are swarmed by people, food, flowers, and presents. Many of times, it is not until after the services and when people stop constantly checking in that it really does hit you that you just lost someone you loved and that is really when the work within you starts.
I have never shared a personal story on my counseling blog, but I felt compelled to because throughout this journey I realized how much mental health was not discussed (at least in my experience.). I recently went to see a new gynecologist that has a great deal of experience with women and breast cancer and had a lengthy conversation with her about how horrible I think these online portals can be for patients’ mental health. I find it completely unacceptable to have to read with my own eyes a breast cancer diagnosis on a Friday evening with no professionals to talk to about this. To say that is bad for our mental health is such an understatement. I was shocked to see how the mental health aspect of this journey was not mentioned by any of the doctors. As a mental health professional, I knew my mental health would take a beating due to this diagnosis which led me to reach out to someone almost immediately. But it made me wonder how many others outside of my profession are suffering through their journey and not taking that proactive stance or do not even know where to begin to take it. I am sharing this story on my blog in hopes that it can help others who are going through this and for you to know that you are not alone and that you can receive the mental health support through counseling if you need it just like I did and still do. I have seen cancer first hand since I was a child within my family and as an adult with friends, clients, co-workers, and children who have a parent with cancer. I have seen how much a cancer diagnosis affects that person and also their loved ones. The night I was diagnosed officially with cancer when I saw my best friend I hugged her, began to cry, and told her I was scared and as she was holding me tight, trying to console me, she whispered that she was scared too. Not only did my cancer diagnosis negatively affect me, but it also affected my best friend who I have known since kindergarten. I always try to find a positive in a negative situation. And I believe that the positives I have found is motivation and purpose. I am motivated by this experience to help future clients who have been affected by cancer, whether it be their own diagnosis or a loved one’s. I would like to now specifically work with clients to help their anxiety and other possible mental health symptoms related to cancer. On a higher more universal level, I would like to fight for there to be a change in the medical world pertaining to cancer and mental health.
Now, we are on to the next stage of the unknown. Unknown how the radiation will affect me. Unknown of the side effects of the Tamoxifen. Unknown if the cancer will come back. Unknown of how of this situation will affect my mental health. To this day I am still in the process of truly accepting that I have cancer. Sometimes when I wake up, before my mind is fully awake, it is calm, forgetting I have cancer, until I remember a few seconds later and the calmness leaves immediately. I wonder if I will want a major life change because I have been given a second chance at life and now know first-hand that life can be very short for some. I know that my mind is going to be a roller coaster but I am not sure for how long and what loops, turns, and drops will exist and I won’t know until I reach that point. But one thing I do know is that it is important to be self-aware, to continue to build your self-insight, to have a toolbox of coping skills handy, and to seek support in your life, whether it be professional counseling or personal supports.
From a mental health perspective, I cannot emphasize enough how much counseling has helped me throughout this journey. Deep breathing, visual relaxation, and refocusing techniques have also helped me tremendously outside of counseling. Self-care has been my focus and I have tried to prioritize myself and my needs by doing activities that I love, activities that are relaxing, and not pushing myself too much has helped. I have found myself researching more and more how I can get involved in the world of breast cancer and help others like I have been helped. I would love to start working with women who have been diagnosed with breast cancer to help support them through their journey. Not only do I have the experience counseling clients with anxiety and depression but now have the life experience of having gone through and still going through the battle against breast cancer. If you are reading this blog and feel that you or someone you know may need support for their mental health during their cancer journey or someone else’s please do not hesitate to reach out.
By: Tara Amanna, M.Ed., LPC