lifesproutle The Secret World of Breast Cancer: 17 Surprising Things I Wish I’d Known
I thought I knew everything there was to know about the illness that took my mother’s life when I was just nine years old. However, when I received my diagnosis, I realized that there were both misconceptions and truths that I hadn’t been aware of.
As we observe Breast Cancer Awareness Month in October, you likely have some level of awareness about breast cancer. Personally, throughout my childhood, my mother underwent treatment for this disease, and unfortunately, she passed away from it shortly before my tenth birthday. However, despite my firsthand experience, there were many aspects of breast cancer that I remained blissfully ignorant about until I was diagnosed with it myself last summer. Let me share with you some of the things I now know and wish I had known back then.
1. There are different kinds of breast cancer
Before I had my biopsy, I thought breast cancer was just one type. As I anxiously awaited the results, my Google searches led me to pages talking about ductal carcinoma in situ, which is an early-stage breast cancer that hasn’t spread. In my mind, I prepared myself for the doctor to tell me I had that. But in reality, she told me I had that and another type – a “grade three” cancer that she referred to as “triple negative.” The way she delivered this news made me realize that it was much more serious.
According to Prof Richard Simcock, the chief medical officer at Macmillan Cancer Support, breast cancers are categorized into four groups, which help determine the appropriate treatment. First, doctors consider where the cancer has originated from – usually the milk ducts (ductal) or the glands (lobular). They then assess the number and size of tumors. The grades indicate how quickly the cancer cells are growing, with grade three being the most aggressive and likely to spread. Lastly, they examine what the cancer cells are sensitive to. In my case, the “negative” meant that certain hormones wouldn’t be effective in treating it, so medications like Tamoxifen wouldn’t work.
Antigone Johnstone-Burt, a clinical fellow in genomics at Macmillan, explains that women often compare their experiences to those of friends or neighbors who have also had breast cancer. However, it’s important to note that they may have had different types of breast cancer. Johnstone-Burt says, “They might say, ‘My friend had chemo and she had a recurrence,’ and we have to explain that theirs could be different.”
Moreover, triple-negative breast cancer is strongly associated with carrying a cancer gene. While I don’t know what type of breast cancer my mom had, if it was triple negative and I had known, it would have been a good reason for me to seek genetic testing years ago.
When discussing breast cancer, it’s important to acknowledge that there are multiple types. I should inform people by saying, “I had a breast cancer, or two.”
2. Treatment varies for each person
When it comes to breast cancer treatment, there is no one-size-fits-all approach. In my case, I underwent chemotherapy, followed by surgery and then radiotherapy. But for others, the order of treatments might be different, or they may not require all of them.
Of course, the ideal situation would be to have to go through as little treatment as possible. However, something is comforting about doctors doing everything they can to tackle the cancer. I’ve met people who were concerned because they weren’t receiving all the recommended treatments. If you find yourself in a similar situation, don’t hesitate to ask your doctor why they are or are not suggesting certain treatments. It’s important to have open communication and understand the reasoning behind their recommendations.
3. ‘Chemo’ can mean different things for different people
When we talk about chemotherapy, it encompasses a wide range of drugs that can be administered in various ways. Some people may only need to take a powerful tablet, while others may receive the drugs through an intravenous drip during a hospital visit. In my case, I had the latter form of chemotherapy, and to make things easier, I had a special device called a “port” inserted into my chest. This saved me from having to get a new needle inserted into my arm each time.
My breast cancer chemotherapy treatment consisted of two drugs called paclitaxel and carboplatin, which my body handled quite well. However, the second half of my treatment involved two different drugs called epirubicin and cyclophosphamide, also known as EC. Unfortunately, after my first dose of EC, I experienced continuous vomiting while watching an episode of The Great British Bake Off and even beyond that. As a result, the subsequent treatments were adjusted to minimize this side effect.
It’s important to note that different types of breast cancer may require different drugs, and each person’s experience can vary. Someone might tell you that they coped better with EC but found paclitaxel more challenging. Each individual’s response to chemotherapy can be unique, so it’s essential to have open conversations with your healthcare team and share any concerns or difficulties you may be experiencing.
4. If you have one of these genes, your risk is significantly higher
For the average woman, studies have shown that there is an 11% chance of developing breast cancer before the age of 80. However, if you have the BRCA1 or BRCA2 cancer genes, the risk jumps up to 79% and 77% respectively.
According to Simcock, having a BRCA mutation is like driving under the influence of alcohol. It doesn’t mean you will have an accident, but you are less safe compared to others. While there are things you can do to lower the risk, such as maintaining a healthy diet and exercising regularly, the odds are still stacked against you.
I discovered that I have the BRCA2 gene, and this knowledge helped me find some closure to the question “Why me?” that many people struggle with. Sometimes, the explanation for why these genes are present is simply “accumulated genetic errors.” These errors are not the well-known cancer genes, but rather subtle differences that have developed in your body over time, putting you at a higher risk of developing the disease.
5. You can appear perfectly healthy even if you have cancer
When I received my diagnosis, I was leading an active lifestyle, biking to work every day, playing tennis, and eating a healthy diet. I looked and felt just like my usual self. The only symptom I had noticed was some pain, which I attributed to a muscle strain until I investigated further and discovered the lump. It was only after I started treatment that I began to notice changes in my appearance, feeling more tired and looking pale and aged.
6. Your lymph nodes can provide important information
In your armpit area, you have around 40 lymph nodes. When there is a lump in your breast, doctors will want to examine these lymph nodes because they are often the first place where cancer spreads. If the cancer has spread to the lymph nodes, it may be necessary to remove all of them. Even if it hasn’t spread, doctors may still take a few lymph nodes for testing, even if you undergo a mastectomy or tumor removal surgery.
It’s important to inform your doctors if you have recently received a COVID or flu vaccination before your scan. I didn’t mention this, and it caused some concern because my lymph nodes had become swollen.
7. Chemotherapy can bring on menopause
Dealing with the challenges of cancer treatment also means facing the possibility of entering menopause. In some cases, doctors intentionally induce menopause as a way to suppress estrogen and prevent the tumor from growing and spreading, especially for those with estrogen-sensitive breast cancer. However, for those with triple-negative breast cancer, menopause is simply another side effect to manage.
According to Johnstone-Burt, some people experience significant symptoms during menopause induced by chemotherapy, such as joint aches and night sweats. Simcock mentions the difficulty of informing patients that hormone replacement therapy is not an option due to the risk of cancer recurrence.
During my treatment, I didn’t notice the effects of menopause. However, now I frequently wake up at night due to hot flushes, and my joints make creaking sounds. Since I’m in my late 40s, there’s a chance that I may come out of menopause eventually. The doctors informed me that this could happen about a year after my chemotherapy ends. However, there’s also the possibility that I may have to go through it all over again at some point.
8. There’s a solution for every problem
It’s comforting to know that almost everything you experience during treatment has been encountered by others before, and the doctors and nurses always have a solution.
Sometimes it can be a bit alarming when they give you medication to prevent side effects that haven’t even happened yet. It’s like getting the worst party favor ever—a bunch of drugs to prevent vomiting or rushing to the bathroom. Sometimes, taking one medication might require taking another to counteract its side effects. In my case, my white blood cell count dropped due to chemotherapy, so the doctors prescribed injections to help. However, these injections could potentially cause severe bone pain, so I was also given painkillers just in case. If I took the painkillers, I would need to take something else to protect my stomach lining. The good news is that I didn’t experience any bone pain.
9. Open discussions about your digestion
You’ll be surprised by the number of people-doctors, nurses, fellow patients—who are interested in your bathroom habits. They’ll want to know how often you’ve visited the toilet and what it was like. In my first week of treatment, my answer was “Not for days.” I was in a lot of pain until my partner had to make three trips to the pharmacy in one day to buy different laxatives.
Almost everything they give you to help you get better can have an impact on your digestive system. If, like me, you’re receiving immunotherapy, the doctors will be especially cautious about the risk of colitis. So, be prepared to let go of any reservations you may have about discussing what happens in the bathroom.
10. Saving your hair is possible
One of the toughest side effects of many chemotherapy drugs used for breast cancer treatment is hair loss. When I started my treatment, my oncologist warned me that without any intervention, I would lose my hair within about three weeks, and it wouldn’t grow back until after the treatment was over.
The intervention available is a cold cap: a hat that cools your scalp while you undergo chemotherapy, protecting the hair follicles from receiving too much medication. It’s not the most pleasant experience. You endure hours of brain freeze, which gives you the worst headache of your life. As your hair thins, which often happens before the treatment ends, it becomes more painful. But for me, it was worth it. I managed to keep most of my hair during my initial round of drugs. However, on the EC (epirubicin and cyclophosphamide combination), it started to fall out. A week after the treatment, I would wake up to find a tangled mess of hair on my pillow, and I would feel awful. Nevertheless, I still had enough hair sticking out from under a hat, giving the illusion of a full head of hair. I knew I couldn’t handle cutting it all off or losing it completely, and the wigs I tried didn’t provide the desired solution.
Other people take control and choose to cut or shave their hair. This can make chemotherapy sessions more comfortable. However, if that doesn’t appeal to you, then trying the cold cap is worth a shot.
11. Nasal hair is really important
When we talk about chemotherapy and hair loss, we often forget about the hair inside our noses. But believe it or not, nasal hair serves a vital purpose. It not only prevents things from going up our noses but also stops things from coming down. When my nose started to drip during my treatment, I realized that all the hair inside had disappeared, and I missed it dearly. From that moment on, I made sure to always carry a tissue with me wherever I went.
12. Fatigue isn’t the same as tiredness
Before going through all of this, I used to think that fatigue and tiredness were interchangeable terms. So, when I was warned about experiencing fatigue, I expected to feel a bit tired, like I had stayed up late or had a busy day. Boy, was I wrong? There were days when I felt like I was dragging myself along, struggling to find any energy. Some days, it felt like a huge effort just to get out of bed. I remember sitting on the sofa one day, wanting to pick up a magazine on the other side of the room, but lacking the energy to do so. The Olaparib tablets I’m taking for the next few months have fatigue as a side effect. I often forget and then wonder why some days I just want to sit down. If you’re an active person, this can be quite a shock.
13. You still have to be vigilant if you have a mastectomy
Even though a mastectomy removes most of the breast tissue, there is still a chance that the cancer could come back. While radiotherapy reduces the risk further, there are also tablets and other therapies available to target any remaining cancer cells and prevent them from developing in the future. However, even with all of these precautions, the fear of recurrence still lingers.
14. They weigh your breasts before reconstruction
Before my mastectomy and reconstruction surgery, the plastic surgeon informed me that they would weigh my breasts to ensure they used the right size implants. The day after the operation, the surgeon shared with me the weight of my breasts. I won’t go into the details, but let’s just say it has added a new element to following recipes in the kitchen!
15. Some people choose knitted knockers
Not everyone decides to undergo breast reconstruction surgery. During a conversation about my upcoming mastectomy, someone in the hospital asked if I wanted to see her “knitted knocker.” Unsure if I had heard correctly, I couldn’t resist saying yes. To my surprise, she reached into her bra and pulled out a handmade woolen prosthetic breast. She explained that she didn’t fancy the idea of having implants, and so she opted for this unique alternative. Others choose to embrace their flat chest.
16. There are many places to seek advice
If you’re seeking advice and information, there are numerous resources available. Cancer charities and organizations dedicated specifically to breast cancer have websites, helplines, and centers where you can turn for guidance. Breast Cancer Now, for example, can connect you with someone who has gone through a similar experience and can offer valuable advice. Future Dreams offers support groups and practical courses, including a headscarf-tying course that I highly recommend. Macmillan and Maggie’s have experts who can assist you in claiming benefits if you’re facing financial difficulties.
17. It doesn’t necessarily change your perspective on everything
After one of my friends was diagnosed with cancer, their partner told me that they no longer worried about trivial matters. I’ve spent a long time wondering if that would happen to me, but so far, it hasn’t. I still find myself dwelling on insignificant things for hours on end.
However, the diagnosis did make me realize something crucial: my most important goal is not entirely within my control. Among all the thoughts that raced through my mind – like never having been to Australia or never having written a novel – the most distressing was the fear of not being able to see my son grow up. Watching him become an adult is my greatest desire, and there’s only so much I can do to ensure that ambition becomes a reality. In the meantime, I’ll continue to curse at Haringey council’s parking permit website.
Source: https://www.theguardian.com/
