Sometimes I think back at the time I was diagnosed with breast cancer almost two years ago. I remember the overwhelming feeling of dread. I remember them talking to me, using technical terms almost on the spot, as if I knew everything they were talking about. I quickly found out that everything that I knew, or thought I knew about breast cancer was either false, drastically incomplete information, or completely new to me.
If you are newly diagnosed with breast cancer and reading this, you might be in the same place that I was; reeling from the news, inundated with information and juggling what you know or thought you knew about breast cancer with all of the information from you doctor, your friends, family and the internet. I get it. I was where you are now. So, here is a list of all of the things I thought I knew about breast cancer before I got breast cancer. Please be aware, I have done my best to back up my information with facts from reputable sources such as breastcancer.org. All opinions are based on my personal experiences with breast cancer. Nothing here should replace the professional opinion of your medical team. I’m not a doctor. I don’t ever want to be a doctor so do not ever take this in place of medical advice. But if it helps you spark a conversation with your doctor, great!!!
- Breast cancer is different from other cancers. Before breast cancer, I thought all cancers were pretty much the same but in different locations in the body. I did not understand that all cancers are unique and depending on the type that you have, needs to be treated in different ways.
- To that end, every breast cancer is different. I did not understand that every breast cancer, just like every snowflake and every fingerprint is unique. All breast cancers start from the cells of healthy tissue and in those cells are genes which tell the cell what to do. The genes are made up of DNA. Sometimes, DNA can change or be damaged. Sometimes there is an outside cause for this and sometimes shit just happens for no reason at all. Sometimes these changes are harmless. Sometimes not and when the DNA in the abnormal cells tell that cell to keep reproducing and rapid rates, you have a tumor. And as they reproduce, they grow more and more different from the healthy tissue and each other. According to breastcancer.org, “by the time a breast cancer tumor is one centimeter (less than half an inch), the millions of cells that make up the lump are very different from each other. And each cancer has its own genetic identity, or fingerprint, created by the DNA in its cells. So two people with breast cancer who are the same age, height, weight, and ethnicity, and who have similar medical histories, almost surely have two very different cancers.”
- To that end, every cancer needs to be treated differently. Cancer cells and their pathology can be vastly different. What might work on one type of cancer cell to kill it might not work on another. That is why we get all these tests on our tumors with reports that are almost impossible to understand. Options for treatment include, lumpectomy, mastectomy, chemotherapy, radiation, herceptin, hormone therapy and other targeted therapies.
- When you get breast cancer, you need to find a breast oncologist. I remember when I was sitting with my oncologist, Dr. Jevahri one day. I asked her what other cancers she treated. She looked at me perplexed and said, “Just breast cancer! It is my passion!” It was then that I learned that oncologists have specialties. This confusion was tied to the lack of knowledge that all cancers are different. I thought all cancers were the same and an oncologist treated cancer. But that is not the case at all. Most specialize in one type of cancer or related cancers. So, when you are researching oncologists, you need to look into those that specialize in breast cancer.
- There might be options for treatments and surgery. I wasn’t given too many options when it came to my surgery and treatment. I heard from two doctors that I would need a mastectomy, followed by chemotherapy and then radiation. But some women are told that they need chemotherapy first and then the mastectomy or lumpectomy. Some need a lumpectomy and then radiation but no chemotherapy. It’s worth asking your medical team which one they are recommending and why. I wish I would have known that women have chemo first and then surgery. I’m not saying I could have or should have gone that route but it would have been nice to ask why that wasn’t being recommended for me.
- It’s normal, and even expected that you will get a second or third opinion. Cancer is a serious thing. Everyone knows it. That’s why it’s expected and even customary to get a second opinion to confirm diagnosis and to get another opinion about treatment. Some insurances even require it. I think it’s good to get a second opinion because it can either confirm what another doctor has recommended (this is what happened for me and it gave me peace of mind) or maybe you will be given an alternative that sounds more appealing or fits your lifestyle better. I haven’t met a doctor yet that has gotten upset or offended when I said that I wanted a second, third or even fourth opinion. In fact, I found that I was more respected for doing my research and making informed decisions. Don’t be afraid to do the same.
- I thought chemotherapy would make me sick as a dog and I’d be throwing up every day. I was deeply afraid of chemotherapy. I imagined the months I was on it spent in the bathroom over the toilet bowl. The idea frightened me more than you can imagine. But that was not what happened to me. In fact, I never even got nauseous on chemo. Maybe it was all of the pre-meds that they gave me. Maybe chemo never would have effected me that way. I don’t know. But I also know that if I did get sick, I had a arsenal of anti-nausea medication at my disposal to use at any time. That was a comfort. Other people do have adverse reactions like nausea to chemo, I was just one of the lucky ones.
- I had no idea just how many clinical trials there were. One thing I asked about right off the bat were trials I might qualify for. I am lucky that I was treated in a cancer center that is a center for excellence and actively participates in major clinical trials. Hopefully, my involvement in two clinical trials will help me in preventing recurrence so I can live a long life see my son grow up. You can see what trials are happening right now by going to this link.
- You don’t need to just know the stage of your cancer but also the grade. When we are diagnosed, we immediately want to know what stage we have. The stage gives us a lot of information, mostly if the cancer is treatable or terminal. Important stuff. But also important is the grade. The grade tells us how different the cancer cells are from the normal healthy breast cells. It also tells us how quickly they grow. Your grade also effects your treatment plan.
- Once you are diagnosed, decisions are made quickly about your care. I was floored by how quickly things moved once I was diagnosed. Maybe it’s because I’m young. Maybe it’s because my tumor was aggressive. I don’t know. But decisions about my care were made super quickly and this was extremely overwhelming. Be prepared for this to happen.
- Chemo can affect your ability to have children in the future. Chemo kills cells, both healthy and unhealthy ones. It also has adverse affects on your eggs and ovaries. I was told by my oncologist that chemo would age my ovaries by 10 years! Yikes!!!!! It could also (and did) put me in menopause. I was advised to harvest my eggs if I thought I might want more children. I did. Livestrong was instrumental in helping with this financially.
- I thought all stages of cancer could be a death sentence. While cancer at any stage can come back, stage 1, 2 or 3 breast cancer is not considered terminal. I was told my cancer at stage 2 was curable.
- I didn’t know that breast cancer can come back after treatment. Even though my cancer was not considered terminal, I learned that it stays in the blood stream and can come back at any time in my major organs: lungs, liver, brain or bones. If it did, I would be at stage 4. Luckily this hasn’t happened but I am always afraid.
- I did not realize that cancer would be a lifelong journey. I was told at diagnosis that I would have a bad year. But when that year was over, my hair would grow back, my energy would be back and life would be back to normal. I have found this to be the biggest lie that they tell you. While it’s true that your year following diagnosis is extremely challenging, I have found that survivorship is equally, if not more difficult to navigate. Throughout treatment, I mostly had a positive outlook and used my power of sarcasm to embolden me and get me through the hard stuff. When major treatment is over, it feels like we are expected to simply go back to normal life. But nothing is normal anymore and we have been through a major trauma. I’m in therapy now to deal with the aftermath of cancer. It is one of the hardest things I have had to do in my life but I am working on it.
- There is no right way to do breast cancer. When you get cancer, the message we get is that we have to be positive and we have to fight. We hear stories all the time about cancer survivors whose positivity helped them heal and heal others. We hear stories about those who, because of their cancer became a better person or learned something new. We hear about survivors who create bucket lists and begin a mission to complete them all. This is not true for everyone, though. Some people go through cancer angry and bitter about the card they have been dealt. Some can’t find a positive side to the situation. Some never feel like they have reached some epiphany about why this happened to them or that it happened so that they can go on to do great things. I think the argument as to whether cancer is a gift or not creates one of the biggest divides in our community. It’s something we all take very personally, no matter which side we are on or how we feel about our cancer. But here’s the thing. You do you! However you feel is the way you should feel. If you feel like cancer has made you a better person, that’s wonderful!!! If you feel like you were just fine before cancer and it has set you back both professionally and personally, that’s fine too. They are both valid points of view. So just feel how you feel and do whatever you need to do and say whatever you need to say and feel however you need to feel to get through the shitstorm that is breast cancer.