If you (or someone you know) has been diagnosed with breast cancer, you may be wondering what exactly you need to know.
When I was diagnosed with breast cancer at the age of 36, I realized that I actually had a lot to learn about the disease, treatment, and side effects.
I was shocked to discover some of the things I now know, and I honestly felt guilty for not being aware of them prior to my diagnosis.
Whenever I explain this information to family and friends, I find that they are also usually in the dark about details of breast cancer and its treatments.
The list below includes things that completely surprised me after being diagnosed with breast cancer, and I hope it helps bring some insight to breast cancer awareness.
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1. Lumps Can Hurt
Or at least mine did! I found a lump in my left breast a couple months after having my second baby.
While researching differences between breast cysts and malignant tumors, I remember finding a whole list of information stating that tumors tend to NOT be perfectly round, NOT move easily, and NOT hurt.
I was comforted by this information because the lump I had found felt like a tiny ball. It also moved easily, and it felt really uncomfortable when touched.
After assuming the lump was a clogged milk duct since I had just given birth, I finally made an appointment with my OBGYN when it didn’t go away.
My doctor and I were both completely shocked when my mammogram results came in.
Long story short, breast cancer lumps CAN hurt! The characteristics of the tumor can also deviate from the norm.
So the moral of the story is- if you find a lump, get it checked out ASAP!!
2. Types of Breast Cancer
This is such a huge, HUGE part of a breast cancer diagnosis, but I had absolutely NO idea that there were multiple types of breast cancer.
Most of my family and friends also had no clue, so I’m going to assume that someone reading this was also shocked by this.
You can view a list of the different types of breast cancer on the breastcancer.org site.
My tumor was classified as invasive ductal carcinoma. It was estrogen and progesterone positive and HER 2 negative. This meant it was basically being fed by hormones.
It is important to know what is feeding the tumor because the hormone status helps determine your treatment plan.
For example, those diagnosed with HER 2 positive receive different chemotherapy drugs than I did since mine was negative.
3. Prognosis Factors
Before being diagnosed with breast cancer, I thought the cancer’s stage at diagnosis was the most important factor.
I quickly learned that so many more elements go into a breast cancer prognosis.
My doctors didn’t even really emphasize the stage of my cancer at all. Instead, they talked to me a lot about my age, my cancer’s grade, and the tumor’s aggressiveness.
Even though the cancer had spread to a couple of lymph nodes, I was still put in the Stage 1 category.
I initially felt relief from this because I assumed that it meant I would have the easier/less intensive treatment plan. Unfortunately that was not the case at all.
Because of my age and other important factors, I needed aggressive cancer treatment regardless of the stage.
I underwent a bilateral mastectomy, tough chemotherapy, and preventative radiation therapy.
This is because my tumor was growing rapidly and was an extremely aggressive grade 3 tumor.
Also, doctors tend to recommend chemo in young breast cancer patients.
4. It’s NOT a Free Boob Job
I had no idea that tissue expanders were a thing until I met with my surgeon about a bilateral mastectomy.
I ignorantly thought that the breast surgeon would remove my breast tissue, the plastic surgeon would insert implants, and then we would call it a day.
This is totally NOT what happens. Instead, I had tissue expanders inserted into my chest during my double mastectomy.
I then visited my plastic surgeon on a regular basis to have these expanders inflated. They were incredibly uncomfortable and very prominent on my chest.
I wore these tissue expanders for a full year and a half after my surgery.
Even though they are rock hard and uncomfortable, I kept reminding myself that I would be happy with the end product!
5. Chemo Side Effects Last a Long Time
Chemotherapy is THE toughest thing I’ve ever been through and I don’t wish it on anyone.
Don’t get me wrong, I’m totally grateful that it is available to treat breast cancer; but, it really breaks you apart in order to build you back up again.
During my six months of chemo, I endured a lot of different side effects that ranged from intense to comical.
I don’t think people realize that there are long term side effects though…or at least I didn’t.
Chemotherapy can be tough on the heart, and my doctor made sure to make me aware that I have an increased risk of heart failure now.
It can also cause additional cancers like leukemia. In addition, some patients never recover from the neuropathy or body aches/pains.
I suffered from bone and joint pain long after chemo was over. I’m happy to say that it has eased up a lot, and I’m really starting to feel like my old self again.
6. Left Sided Breast Cancer Is Complicated
After finding out I had breast cancer (and not a cyst), my surgeon and I agreed on a bilateral mastectomy.
During this procedure, my breast surgeon removed four lymph nodes out of precaution. Unfortunately, after surgery I learned that two of those nodes contained cancer cells.
This meant that I needed radiation therapy to help prevent the cancer from returning. My breast surgeon called to explain that radiation on the left breast can be tricky because your heart is on your left side.
The radiation oncologist needed to treat the breast, but she obviously didn’t want to damage the heart in the process.
Luckily the radiation oncologist I met with recommended deep breathing radiation, and it helped protect my heart during the process.
Overall, compared to chemo, radiation turned out to be a breeze!
7. It’s Expensive
Breast cancer is expensive!!! And that’s coming from someone with decent health insurance.
Between the bilateral mastectomy surgery, plastic surgery appointments, chemo (which was a huge expense), radiation, and wigs/hair pieces, the bills pile up quickly.
I met my out of pocket max for my insurance for two years in a row now.
My advice on this is to just be prepared for the cost. Also, if someone wants to offer their help, take it!
It was really hard for me to accept help from other people, but in hindsight I’m glad I did.
If you are looking for gift ideas for yourself or for a friend with breast cancer, this post lists 9 items I found super useful during treatment!
My husband’s colleagues created a meal train for us while I was going through chemo.
This was really nice because it meant I didn’t have to worry about cooking. It also allowed us to save money on groceries and food thanks to the help of family and friends.
8. Mental and Emotional Toll
Breast cancer is undoubtedly a physical battle, which most people are able to recognize. However, it is also a constant roller coaster mentally.
After your treatments are completed and time has gone by, people tend to forget about your diagnosis even though it is never far from your train of thought.
I think about cancer every single day. If I feel a random pain or suddenly develop a cough, my mind immediately goes to the dark side.
I am fully aware that there is a chance my cancer can come back at any moment, and it is no wonder that some people struggle with mental health after going through this.
The biggest thing that has helped with my mental state during recovery is a devotional book called Jesus Calling.
I received it as a gift during chemo, and it is a constant daily reminder to breathe and think positively. The super short daily devotions focus on letting go of worry and living in the present.
There are days when it even seems to be written completely for a breast cancer patient because it really nails the emotions that we feel.
9. It Could Happen to Me
Probably the biggest shock of all was that breast cancer could happen to me. I come from a huge family where all four of my grandparents were still living when I was diagnosed.
My aunts, uncles, cousins, and immediate family members do not have any experience with any disease…much less with one as serious as cancer.
My husband is really into health and fitness so I exercise and eat healthy for the most part. Needless to say, I couldn’t understand how this could have happened to someone like me.
But it did.
In the beginning I really struggled with the cause of my cancer. Every time I ate cheese or drank milk, I wondered if the hormones in dairy products caused my cancer. When I put on deodorant or lotions, I panicked that maybe they were the cause.
I finally told my oncologist that it was driving me crazy to not know what caused it. He replied that it drives everyone crazy!
He also gave me some interesting information that did help, though.
My doctor explained that scientists think there is SOMETHING released in a woman’s body when she is pregnant, and that women need this SOMETHING to be released when they are young because it prevents breast cancer from growing.
My oncologist explained that breast cancer only recently became a pandemic once women started having fewer babies and later in life.
He told me that if I were to research cultures where women had lots and lots of kids at younger ages, I would find that breast cancer is not common there.
My doctor also said that the biggest segment of the population who get breast cancer are nuns.
He informed me that they believe they can eventually find out what needs to be released in women’s bodies and a vaccine would be available to give to people.
I thought that was so interesting, and it made me feel a lot better.
I no longer worry as much about the cause of my cancer because I obviously couldn’t go back in time and have lots of babies in my twenties.
The details about breast cancer that I mentioned above were all things I found really surprising during my diagnosis and treatment.
After talking with family members, friends, and other breast cancer patients, I realized that most people are pretty clueless about many of the life changing effects of breast cancer.
What things do you think are important to know after a breast cancer diagnosis?
Comment below and tell me about it!