Twelve Things I learned about Breast Cancer

Elke wearing a wig and mask

One out of 8 women will get breast cancer in their lifetime. If they have a gene mutation like the ATM or BRCA, their chances will increase exponentially. The bad news is that breast cancer is the leading cause of death in women, although the 5-year survival rate is 99%. The good news is that, in general, your prognosis is good, and they have excellent protocols to treat your disease.

My story started last March, just after my birthday (age 51) when I found a lump. This was during the Covid Pandemic and I was told that I would have a phone consultation with a Doctor from the walk-in clinic, which I found quite bizarre. But she basically just referred me for a mammogram, the first of many diagnostic tests I was given, in an effort to answer the questions: Was the lump cancerous? If so, what kind of cancer and what would be the recommended next steps?

The mammogram came back positive and it was a cancer called “Invasive Ductal Carcinoma”. This is the most common type of cancer that starts in your milk ducts and spreads to your surrounding breast tissues. Eventually, it can spread to your lymph nodes and other areas of your body, according to the Cleveland Clinic. I also found out I had “calcifications”, which are not always cancerous, but of course, mine was. This led me along a journey of discovery, where I learned more than I ever want to know about breast cancer and how to treat it. My story might be of help to others who have discovered lumps and who are wondering what will happen now?

Three Things I Learned About Diagnostic Tools

  1. Biopsies – I did not know that their are different types of biopsies. I always thought they just take out a sample and study it under a microscope and that is it, but then I experienced 4 completely different biopsies: a fine needle biopsy, a core needle biopsy, an incisional node biopsy and a sentinel node biopsy. What is the difference?
    a. Fine needle biopsy: Using a thin needle with a hollow center to remove a sample of cells from a lump; this was my first one, so it was scary, but it wasn’t too bad
    b. Core needle biopsy: Using a bigger needle with a hollow centre to remove a sample of cells from a lump or suspicious area; this was definitely more painful, but they gave me a “squeeze ball” to hold during this procedure
    c. Incisional node biopsy: A surgical procedure in which a cut is made through the skin to remove a sample of abnormal tissue or part of a lump or suspicious area. The “best part” (not) is that they couldn’t give any anesthesia for this, apparently and you are not supposed to move around. Yes, this one hurt a lot. They also hoist you up high and operate on you from underneath, like a mechanic fixing a car…
    d. Sentinal node biopsy: On the morning of my mastectomy, at 5:45 am, I went into one Hospital and had dye injected into my breast. This dye then travels to the first 6 lymph nodes and so they know which ones to remove. Another painful, embarrassing procedure that included no anesthesia, but in the greater scheme of things, wasn’t bad
  2. MRI’s for breast cancer had 2 surprises
    a. The first is that they often inject what they call “contrast dye” into you before doing a breast exam. For someone who hates needles, this was a shock.
    b. You don’t just lie on your back and relax during this exam, as I had always seen on TV or in the movies. They actually have this fancy “breast coil” with two holes that you lie face down on and that allows them to take pictures of both sides simultaneously, while you’re listening to the usual intense clicking sounds due to electric current being sent through coiled wire – an electromagnet – that causes the coil to expand and be “as noisy as a rock concert”. Not fun, but doable.
  3. Other diagnostic procedures, where I was just surprised at how many they did even before, during and after treatment
    a. Mammogram (to verify the initial findings)
    b. Ultrasounds
    c. Bone density scan
    d. CT Scan
    e. Pet Scan
    That was a lot of scans!

Three Things I Learned During Treatment

  1. Chemotherapy surprises
    a. You will feel like you constantly have to go to the washroom – they ask you to drink water before-hand, they recommend you drink something during, but even the chemo has liquid in it and they wash it out with a saline solution afterwards, so you are definitely well-hydrated; I was also surprised to learn that you just simply take your chemo with you into the rest room, if you have to go, as it is attached to a movable device on wheels.
    b. The needle goes into the back of your hand and I did not like that; especially as time passes and they find it more and more challenging to discover exactly where your vein is – the worst day was when they tried to find a spot in 3 different locations in my hand and finally had to call in a specialist who knows how to deal with people with vein issues (usually very elderly people). That really hurt.
    c. For some reason, even though chemo affects your hair, your fingernails and toenails, they only give you “icy gloves” for your hands; at least at my cancer agency. When I asked them why not feet, as well, they wouldn’t answer me. Some people use “cold capping”, which helps a limited number of people keep their hair during the chemo. My nails were actually quite good during the 6 rounds of chemo taken 3 weeks apart, but lately, they have been crumbling and breaking constantly, so that can take a while to kick in.
  2. Radiation surprises
    a. Radiation is a (painless) pain, as you often have to do a large number of rounds 5 days a week. In my case it was 25 rounds of radiation over Christmas time for 5 weeks, just 10 minutes at a time, but you have to lie on the table while reaching over your head to hold onto a pole that sticks up with both arms. Now in pre-cancerous days, this would have been fine, but I had surgery in October and my sessions started in November and I still wasn’t completely healed, so my range of motion was limited. I also got a radiation cough in winter and could barely breathe while lying stretched out on the table.
    b. The second surprise was the fact that the radiation was given to me in the front (obviously), but it went right through me and burned my throat and my back. My back is recovered, but my throat is still in pain six months later.
    c. Because it was Christmas or because of Covid, I got to try out several different radiation rooms and they were all different. One of them had a machine that was dressed like Rudoph the Reindeer, one of them had music choices you could pick out. One of them had nice pictures to look at. I always feel they should just paint some tropical scenery on the wall and hand out pina coladas afterwards, which would make you feel like you are at the beach getting a sunburn…
  3. There is something called “Immunotherapy” or in my case, Herceptin/transtuzumab, which is used when Human Epidermal growth factor Receptor 2-positive (HER2+) has spread into the lymph nodes. I did 6 rounds along with chemo and then 11 rounds just on its own, so 17 rounds altogether, for almost a year! This drug can cause heart problems, infusion reactions or severe lung problems, so I have to have my heart tested with an ultrasound every 3 months. So far, so good. Immunotheraphy helps your own body fight cancer and is one of cutting-edge treatments that was approved by the FDA quite recently in 2015.

Three Things I Learned About Surgery

This section is written in response to a very fit young man at a recent party who said “Not to be insensitive, but I heard that breast cancer is one of the easiest cancers to have.” Please read this section and then let me know what you think.

  1. Surgery Surprises
    a. It is now a day surgery; imagine that. My mother had her procedure in 2001 and she stayed in the hospital for 2 nights; I had to leave around 6 pm and went home only to experience uncontrolled bleeding and needed a blood transfusion as well as emergency surgery at 1:30 am in the middle of the night
    b. There is something called nerve blockers that work exceedingly well to mask pain, except it hurts a lot to get them administered
    c. Your surgeon and plastic surgeon operate on you at the same time. One of them takes out the breast tissue, but preserves the skin, while the other one places tissues expanders (like hard plastic balloons) into your breast and sews everything shut; great teamwork. The only issue is that it takes months or years for the feeling in your skin/nerves to come back
    d. You will have 4 drainage tubes dangling from you for several weeks – these drainage tubes need to be emptied twice a day and get caught on everything – and you will not be able to properly bathe or shower until they are removed
    e. Some plastic surgeons choose to use donated human skin or pig skin to support tissue expanders or implants. These are known as acellular dermal matrix (ADM) products because they have had the human or pig cells removed. This reduces any risk that they carry diseases or that the woman’s body will reject them. They are mainly made of collagen so the person’s own connective tissue can grow over the framework to extend and support natural tissues and help them grow and heal. ADMs can help support and position the tissue expander or implant.  (as seen on cancer.org) I had no idea this even existed! People can not just donate inner organs, but also their skin.
  2. Recovery surprises:
    a. For a while after my surgery, due to Covid measures you could no longer receive in-person physiotherapy, but instead were given a book with exercises to do – for me this was a bit of a challenge, as I wanted to ensure that I was doing them correctly. In the meantime, I had my first appointment on Zoom and my second appointment in-person, so far, and things are much better.
    b. Tissue expanders can “pop” and mine did for some reason and I had to have my 4th surgery in 4 months! The tissue expander was “defective” and all the saline solution leaked out, but the plastic surgeon did a great job putting a new one in.
    c. The surgery led to “cording” or Auxillary Web Syndrome (AWS), which is when the connective tissue surrounding your lymph vessels has been damaged, which causes it to harden and feel like a “cord” running down your arm, which needs exercise and massage treatments.
    d. It wasn’t until everything was over that I started getting bouts of depression and have booked a few sessions with a “Cancer Councillor”
    e. Finally, my range of motion in my right arm, where the sentinal node biopsy was done is now very limited and I will have to work hard for months to get back to where I was.
  3. General surprises:
    a. The number of surgeries surprised me. One surgery to remove breast tissue and add tissue expanders. A second emergency surgery to stop the bleeding. A third surgery to fix the defective tissue expander. A fourth surgery to add implants. A fifth surgery to do cosmetic fixes. Then your implant is only guaranteed ten years and you might need more surgery. And that is if everything goes well.
    b. The plastic surgeon did an amazing job with reconstruction – everything looks so much better than I thought it would.
    c. Your tissue expander has a metal valve that can set off an airport security devices and I now am a card-carrying member of the “Device Identification” Club.

Three Final Random Surprises

  1. My plastic surgeon and my oncologist both got pregnant and are on maternity leave!
  2. A cancer diagnosis can lead to “incidental findings” and this is how I discovered I have fibroids and lesions on my liver
  3. Some cancer treatments (like radiation) can lead to other types of cancer! (Lymphoma, for example)

For those of who you have gone through a similar journey, there is probably so much more I could say, but for now this is enough. There is a lot of cancer in my family (at least 9 close relatives have had it) and they are all still alive, so cancer doesn’t need to be a death sentence. At the same time, when I was first diagnosed, my oncologist handed me a booklet that had a headline reading “End-of-Life Preparation” or something like that and you realize that it can be a serious thing.

For those of you who have cancer and are fighting the good fight, please know that I am thinking of you and praying that things go well. Just recently I met a woman with breast cancer who seemed to be doing quite well and when I didn’t hear from her for a few weeks, I tried contacting her to see if everything was OK. Unfortunately she had passed away and it was so hard to believe, as I saw her as an energetic woman who seemed outwardly healthy and just full of life. You just never know.

For those of you who don’t have cancer, it is probably best to learn more about the person fighting the cancer, as there are so many different types, so many different treatments and so many different prognosis’s. Cancer can’t always be seen, but the effects and treatments can have a tremendous impact on someone’s life and body. Listen and learn about their struggles before making some kind of judgment. But most of all, be grateful for your own health, as it is a true blessing.

Check out BC Cancer Agency or https://www.cancer.org/ for more information.

Finally, my goal is to focus on being positive and feeling gratitude towards everyone, especially my family and friends, who helped me out along the way. Thank you for listening!

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