Q: What type of cancer do you have? What stage is it?
I have metastatic breast cancer in my right breast. I was diagnosed on November 9, 2017. It is invasive ductal carcinoma, the most common type of breast cancer. It is estrogen-receptor positive (ER+), which means that my cancer feeds on estrogen in my body. My cancer is stage 4, which means that it has spread (metastasized) to my lymph nodes and other parts of my body, in my case, my bones. I currently have cancerous lesions on my sternum, spine, hip bones, and ribs.
Q: What is your life expectancy?
There is a lot of really bad information available regarding metastatic breast cancer life expectancy. If you google it, Google will tell you that the average life expectancy is around 2 years. That’s a really scary number! My doctors have been very firm that they will not give a “life expectancy” number, especially this early in the treatment process. They are very optimistic, but have also said that they need to see how my body starts responding to treatment. I refuse to lump myself into the “2 years or so” category from the internet because we are still in such early stages of treatment, and there is no reason not to be hopeful and positive about my prognosis.
The biggest reason to disregard this prognosis number is because it really doesn’t describe much about my individual situation. This number takes into consideration people of all ages, with all different types of breast cancer, including cancer that is incredibly aggressive, and who have had numerous recurrences. It also lumps into one place people with metastases in all different organs and parts of the body. I have metastases in my bones, but nowhere else. My vital organs are currently cancer-free, which is significant, because my body is essentially functioning properly in many ways. Additionally, I am young and otherwise very healthy, and there are a lot of different treatment options available for me to try. Currently, my doctors are approaching treatment like a serious but chronic condition, rather than an end-stage illness, and have stressed to me that people can live for many years with metastatic breast cancer in ways that allow for them to have a very good quality of life.
Q: What is your treatment plan?
My current treatment plan involves hormone therapy. Because my cancer feeds on estrogen, the goal is to starve it of estrogen in every way possible. I receive monthly injections that shut down my ovaries and induce menopause, and therefore shut down the majority of estrogen production in my body. In addition, I take an aromatase inhibitor every day that inhibits estrogen production elsewhere in my body, therefore (hopefully) inhibiting tumor growth. In January, I am going to start an additional medication that is intended to inhibit the production of cancer proteins, which will (hopefully) continue to starve the tumors and inhibit further growth. At this point, I am not going to have chemotherapy. I may have surgery in the future to remove my ovaries, so that I can stop my monthly shots and further cease estrogen production, but I will not be having surgery to remove any tumors.
Q: Why wouldn’t you do chemotherapy or surgery?
Surgery is only effective for localized cancers. As my cancer has metastasized, and is also in my bones as well as my breast, there is no way to guarantee that surgery would remove all of the cancer. In addition, it would be extrordinarily taxing on my body to undergo surgery right now, and it is not really feasible to surgically remove the cancer in my bones. My treatment is a marathon, and the goal is to slowly and steadily attack the cancer cells in my body, rather than be able to fully eradicate it all at once with surgery.
Chemotherapy is actually less effective on my type of cancer than hormone therapy. Because chemo is incredibly toxic to the body, it is most effective when it can be done in a way that attacks any remaining cancer cells and has an end goal in sight. Because my cancer has metastasized, there is less of an end goal for chemo treatment, and doing ongoing chemo with no end would eventually cause me more harm than good due to the significant side effects.
The drug protocol that I am currently on is believed to be both the most effective for my type of cancer as well as the least harmful to both my healthy systems and quality of life. It is our hope that I can continue this treatment for several years before it stops being effective.
Q: Did you have any symptoms? How are you feeling? How are you guys handling all of this?
I did not have any symptoms of breast cancer. My primary care doctor found the lump in my breast that precipitated the diagnostic testing needed to confirm the cancer. I have had quite a bit of bone pain for many months, however, it was not so significant that it kept me from my daily activities, and it was easily explained as pain from chasing a toddler around. I am currently feeling ok – I have some bone pain and stiffness, but I have not had too many side effects of my medication regimen as of yet.
We are handing it about as well as could be expected. Some days we are tremendously optimistic, and we live our day – to – day in our normal routine, and some days we feel crushed by the weight of this diagnosis and the fears, uncertainties, and challenges we face because of it. Felix struggled a lot during the diagnostic process because there was such a tremendous disruption to his routine, and there was a lot of crying and very intense, serious conversation taking place that he didn’t understand. He has adapted well to the new changes in our routine these days, particularly with all of the assistance from family staying with us to help adjust to our new normal.
Q: Can you still have kids with this treatment?
Unfortunately, no. My treatment requires that my ovaries be completely shut down by chemically inducing menopause so that they cannot produce any more estrogen. Because of that, I will not be able to biologically have any more children. Freezing eggs or embryos was an option, but it is very, very expensive (about $10,000 or more) and our insurance does not cover it. We felt that it was too much additional stress to put ourselves through and, at this time, adoption or using a surrogate isn’t something we want to pursue. In addition, we want to be able to move forward with our lives as a family of three and enjoy all that life has to offer in that respect. We adore Felix, and while we feel sad that we will not be able to give him a sibling, we feel like our family is complete with him.
Q: How can I help?
Thank you for thinking of us. Your prayers, thoughts, and well-wishes are always welcome and appreciated. if you’re so inclined, we love getting cards in the mail! In addition, we love Blue Apron gift cards!
If you’re local and would like to help with Felix, you can reach out to Christian and me. I have occasional days where I have pain flares, in which I experience fairly significant and debilitating pain, so we are starting to compile a list of people we can reach out to when this happens. When I have this pain, I generally have to take medication that prevents me from being able to drive, so please let us know if you have any specific times of the day/week/month in which you are usually available to come to us, and we will put you on the call list. We are not currently putting Felix in any regular day care or hiring a nanny at this time due to financial constraints, concerns about germs, and because we do not have a good enough sense of my “good” and “bad” pain days to predict them at this point in time.
Q: I know someone going through/who has gone through a similar situation. Do you want me to connect you two?
Yes! I love to talk to other people going through this. Cancer is very scary and isolating, and it’s always great to talk to someone else about it. If you would like to connect me to someone you know, please send them an email and copy me to facilitate an introduction. You can also feel free to give them this blog link if they would prefer to reach out to me themselves. Please do not just send me their contact information, as it can be very awkward and overwhelming trying to reach out to strangers and say “hey, we have a mutual friend who wanted to connect us since we both have cancer stories. So…hi?”
Q: Can I pass along your blog link to family/friends/someone I know who is dealing with cancer?
Absolutely! While this blog was originally started as a medium to update family and friends on my cancer, I am hoping to make it a resource and educational tool to better understand what life with breast cancer is like. Additionally, I am attempting to compile a list of resources and terminology, so stay tuned! Please feel free to share it with anyone you think might be interested in reading along and cheering us on.
Q: What can I say/do that is helpful? What should I avoid? Is it ok to ask about your cancer?
It is definitely ok to ask about my cancer! I only ask that you check the blog for updates and information. Generally, if there is new information, I will update it here first. If I haven’t posted it here, that means there is no new information or that I am not ready to share it yet. It can be very emotionally taxing to recap the same information over and over, so I ask that people avoid asking me directly for updates, but I very much appreciate people reaching out and asking how I am doing.
The biggest thing that someone can do to support a friend or family member going through something like this is to not forget about them. Find out when the next appointment is and offer to come babysit, see if you can babysit for support group meetings, send over a housecleaner or a meal if it seems like we are a hot mess, or just continue to send cards. In addition, making a donation for metastatic breast cancer research is tremendously meaningful to me. The initial diagnostic period is devastating and awful, but the treatment and adjustment to a life with cancer is a marathon, not a sprint. My life and the lives of my family have been changed forever, and remembering that is incredibly touching.
If there are any other things you would like to know, please ask! Most of the time, I am happy to talk about this, as it is a huge part of my life now, and I think it is very important to recognize that and honor it, rather than sidestep it or pretend it isn’t there. If I’m not up for cancer talk at the time, I will generally let you know, but also know that I am not offended by your asking. Please feel free to reach out with questions – I want to utilize this platform in the best way possible to create a safe and educational space for breast cancer information.