This is quite extensive - the good, the bad and the ugly.
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October is breast cancer awareness month.
As a survivor, the Pinktober pink washing makes me feel frustrated that accurate and useful facts are not being shared, and research (which is not advancing quickly enough) is not getting the funding it needs because money is being donated to large corporations and very little of it reaches the researchers and patients that need it most.
I encourage you to donate to organizations such as the Metastatic Breast Cancer Network, Terry Fox Foundation, your regional cancer groups and hospitals, or donate to an individual undergoing treatment.
So in the spirit of awareness, I will post one fact about breast cancer every day for the month of October. Most of these facts I was unaware of when I was diagnosed, and paints a more accurate picture of the disease and the people who fight it every day.
1- Breast cancer afflicts 1 in every 8 women (12%) in Canada and the US. Breast cancer can occur in women AND men of any age. It's not an old women's disease.
2- There are many kinds of breast cancers. There's non-invasive (in-situ), invasive, skin, and each of those have different receptors (either a hormone is driving the growth, a protein is being over expressed, or "triple negative" for which there is no clear understanding). Please see http://www.breastcancer.org/symptoms/types for more information.
3- There is no existing exam that is 100% effective in detecting breast cancer. Young women have dense breast tissue which can make tumours undetectable on mammograms. This is an issue particularly for early diagnosis of aggressive cancers and also post-treatment (when the person is in remission) because there is no regular follow-up exam that can conclusively confirm that the cancer has not returned. Doctors rely on the patient to identify symptoms that could potentially be a sign of recurrence. This is a source of anxiety as survivors are still experiencing treatment side-effects once in remission and cannot differentiate between symptoms caused by side-effects and those caused by recurrence.
4- Not everyone with breast cancer gets chemo, surgery and radiation. The treatment plan is very specific to the type and stage of cancer and the person's age. Every country and institution approaches treatment for breast cancer differently. Some involve the oncologists from the beginning and some start with the surgeon to remove the cancer before looking at other treatment options. In Ontario, they typically start with the surgeon and patients cannot see an oncologist until after surgery unless the requested by the surgeon because the tumour is inoperable. Even specific treatment plans vary greatly, from the type of chemo prescribed to the need for radiation. There is no one known solution for breast cancer, and even the statistics and probabilities are inconsistent over the various studies.
5- Neoadjuvent chemotherapy is chemo given before surgery, and adjuvent chemotherapy is chemo given after surgery. There are benefits to both approaches. Getting chemo before surgery allows doctors to see how well the cancer reacts to the treatment (with the assumption that any escaped cells would also react in the same fashion). Getting surgery before chemo quickly removes the cancer from the body before it can start spreading into the organs.
6- Many forms of chemotherapy are extremely toxic and can severely damage blood vessels. In those cases, a PICC (intravenous line through the arm and directly into the chest cavity) or port (intravenous line directly into the chest) is temporarily placed into the patient for the duration of the chemotherapy treatments, and sometimes longer as a precautionary measure. A PICC is used for more frequent treatments as there is a longer distance between the opening and the heart, thus reducing the risk of infection. The PICC however is not as convenient as the port as you cannot get it wet. In both cases, the dressing must be changed often to prevent infection.
7- One of the lesser known side effects of chemo is menopause. Most women undergoing treatment will get menopause (and all of the associated symptoms), which could either be temporary (less than a year) or permanent.
8- One of the lesser known side effects of chemo is weight gain, which is often very hard to lose.
9- One of the lesser known side effects of chemo is that it remains in a person’s bodily fluids for 48-72 hrs after treatment. Patients are asked to flush the toilet twice to ensure there’s no dangerous chemicals left in the toilet that could splash back onto other people using the same toilet afterward. And those aren't the only fluids affected 😱
10- One of the lesser known side effects of chemo is neuropathy, which is pain and numbness caused by damage to the peripheral nerves.
11- One of the lesser known side effects of chemo is “chemo brain”, which is a foggy and forgetful mental state that is outside of the control of the patient. It can last for many years post-treatment and affect a person’s ability to perform their duties at work and at home.
12- In the case of aggressive cancers, dose dense chemo may be prescribed. Dose dense chemo is more frequent and higher in dose than regular chemo treatments, and is also given more times. For example, a typical chemo treatment plan for IDC breast cancer is 3 AC treatments and 3 Taxol treatments at a specified dose given every 3 weeks. Dose dense is 4 AC treatments and 4 Taxol treatments at a higher dose given every 2 weeks. It represents the most chemo that a person is permitted to receive.
13- Because a person’s immune system is severely compromised during chemo, dose dense chemo is not possible without regular Neupogen injections. In Ontario, Neupogen can cost anywhere from $250 to $1000 per injection, and 5 to 7 injections are required (one a day) after each chemo treatment. Luckily, the cost is covered by one of many programs that are available to us. Neupogen has side effects of its own, including extreme bone pain.
14- Surgery in the form of a lumpectomy (where only a small portion of the breast is removed) or mastectomy (where an entire breast is removed) is almost always performed (even if there is no cancer remaining after chemotherapy). It either removes the existing tumour or is a way to verify that there are no cancer cells remaining. A specific margin of cancer-free tissue is required for the surgery to be considered successful. If chemotherapy removed all of the cancer, it is considered to be a Pathological Complete Response (PCR).
15- Reconstruction is often available to patients who have had surgery, however the final result is rarely perfect, including scars and unappealing deformation. Furthermore, surgery on the entire breast often causes a loss of sensation in the breast.
16- During surgery it is customary for the surgeon to remove one or more lymph nodes in the armpit to verify if any cancer cells started spreading into the body. The lymphatic system is a network of tissues and organs that help rid the body of toxins, waste and other unwanted materials. It is the first organ that cancer cells would be discovered in if the cancer had started to spread, so if the results are clear, then it is assumed that no cancer cells went beyond the breast tissue. If it is suspected that the cancer did spread to the lymph nodes, the surgeon may remove many lymph nodes to see how far it spread.
17- If a surgeon removes many lymph nodes during surgery, the patient may require a drain for some time after surgery to assist the lymphatic system in removing fluid build-up. The drain is inserted into the body by a tube and must be drained by the patient several times a day.
18- In Ontario, most patients are discharged the same day as surgery, but a doctor can make a special request for an overnight stay. For same day, they force you awake, ensure you are stable and wheel you out to a car where your ride is there to drive you home.
19- Radiation has a reputation for being "easy" because the patient simply lies down on a table for a few minutes every day and gets zapped by an invisible beam. The side effects of radiation can be quite significant, ranging from serious burns becoming infected and extreme fatigue. Because it is the last form of treatment, it is a very difficult and exhausting process to go through. It is the end of a long marathon.
20- One of the lesser known side effects of chemo and radiation is cancer. Yep, it’s a risk that patients take in order to survive.
21- One of the lesser known side effects of surgery and radiation is lymphodaema, which is painful swelling in the arm caused by the removal of or damage to lymph nodes as a part of cancer treatment. Massage therapy and wearing compression sleeves can help with temporary relief.
22- Some side effects of treatment are permanent for some people (hair loss, menopause, neuropathy, lymphodaema, pain, chemo brain, fatigue, etc). They live with it for the rest of their lives.
23- Breast cancer can be survivable, but many still die from it. Most breast cancers have a 93% 5-year survival rate, however triple negative breast cancer has a 70% 5-year survival rate after which the odds improve significantly (even more so than other breast cancers), and inflammatory breast cancer has a 5-10% 5-year survival rate. Triple negative breast cancer also has a 40% rate of recurrence.
24- Hormonal therapies are available to survivors of hormonally-driven breast cancers as additional treatment once in remission. It stops the body from producing hormones that fed the cancer in the first place. In the case of triple negative breast cancer, because it is not known what causes it, there are no post-treatment options (which explains the lower survivability rate).
25- Many people in Canada are uninsured and must work through treatments. Many people in other parts of the world cannot even afford proper treatment.
26- One of the lesser known side effects of cancer diagnosis and treatments is PTSD, an anxiety disorder that a person may develop after experiencing an extremely frightening or life-threatening situation. A recent study found that nearly 1 in 4 women who were newly diagnosed with breast cancer experienced PTSD.
27- Some patients choose naturopathic cancer treatments instead of conventional ones, or in many cases, they do a combination of both. Some studies have been performed on natural remedies, however none are widely accepted in the medical community. Some people have cured their breast cancer with high dose vitamin-C infusions or cannabis oil, however many people have also died when avoiding conventional treatments.
28- People don’t die directly of breast cancer. They die of metastatic breast cancer (also known as stage IV breast cancer) when the cancer spreads to other organs and cause them to fail.
28- Emerging medical breakthroughs for breast cancer are being reported daily, including the use of immunotherapy to fight breast cancer. However these new and novel treatments are not yet available to patients unless they present with stage IV breast cancer (and even then, it may not be available to them). There is still a long way to go.
30- Finding breast cancer early does not necessarily improve your odds. Some cancers grow slowly, and others grow very fast. Breast cancer is sometimes not discovered until it has spread and is at stage IV. Symptoms such as a palpable lump may never present in some cases which prolongs diagnosis.
31- Many people can live years with metastatic (stage IV) breast cancer. They receive treatment on a regular basis to keep the cancer under control, however there is no cure for metastatic breast cancer. Essentially they can be on chemo and radiation for the rest of their lives.
32- Many active people who eat very healthy get cancer. You cannot universally blame sugar, smoke, alcohol and a sedentary lifestyle to this disease.
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