We are the
Family and FriendsFrom the moment I was diagnosed and shared the news, I was surrounded by love and support to an extent I’ve never know (or needed). I continue to be humbled by the number of people who truly cared about how I was doing and still care, several years later. Before my hysterectomy I was worried and asked mom, “What if nobody has prayers left for me?" My anesthetist for that surgery was an incredibly handsome angel – apparently, they do! Prayers = answered. I chronicled my interaction with him. If you feel like laughing and swooning in equal measure, read Love in the OR at this link. I knew that having a friend or family member with me at appointments and chemo would be necessary if I was going to make it through. After my first chemo, I was shocked by the immediacy of the symptoms. It hurt... bad. I told mom, “This is gonna kill me. I can’t do this seven more times. I’m gonna die.” She was so calm and steady when she replied, “You’re not going anywhere. You will not die.” I don’t know if deep down she doubted her words, but in that moment it was exactly what I needed to hear. I clung to her confidence and used it to battle my rising fear. Even though chemo was brutal, I have many fond memories:
- A friend sneaking a doughnut into my purse to celebrate finishing yet another blooddraw
- Laughing during the many hours in the chemo chair (half of my chemo sessions were more than five hours... each!)
- Watching the Flintstones with my grandmother while eating a cold cut sandwich, made just the same as when I was younger
- Hearing stories of a little girl who prayed for me every single night and prayed to give my doctors strength, too
- Getting Starbucks from my aunt at the best possible moments
- Receiving tons of loving messages
- All the hand holding (there was a lot)
- Visits from fur friends, because who doesn’t love cuddling a Great Dane?
The Medical TeamI know it sounds crazy, but I smile when I think about my medical team. Each one was a collaborative relationship that enhanced my knowledge of that step in the process. The warmth and support of both the staff and doctors was unexpected, but very welcome! To this day, I get hugs when I enter their offices for checkups. The surgeon who performed my double mastectomy was also the doctor who told me I had cancer. Before my last appointment with him, I attempted to gather my thoughts so that I could express to him how much his expertise and positive demeanor meant to me. When the moment came I was overwhelmed. I teared up as he said he was proud of me and wished me “the best of everything good in this life.” I shook his hand when I should have given him a hug. I’m thankful that it’s his kind face I see when I think back on the moment I was told the results of the biopsy that changed my life. I blogged about the visit, including a chance encounter with a woman waiting for her breast lump biopsy results. Read more at this link. My plastic surgeon was also a perfect fit for me. We talked about such intimate things – breast size, texture, sex, femininity. We delved into the nitty gritty, but found humour in the most serious moments. I was in my surgical robes waiting to go in for my first mastectomy and reconstruction. It was the most terrified I’ve ever been in my life. (When I was on the operating table, I was shaking so hard that only my ankles, butt and shoulders touched the cold steel.) Before entering the operating room, she needed to do markups on my chest – where is the natural cleavage line? What kind of cleavage would I like? How high should the implant be? She said, “Okay let’s put an X on the left breast” (the one we were removing and replacing). I screamed out, “WAIT... unless X means ‘leave the breast alone.’” She froze and the small group of us stared wide eyed at each other. She replied, “Oh my god she could be right.” We all burst out laughing. Imagine mixing that up?! I can’t even. The strongest connection I have is with my medical oncologist. I wasn’t exaggerating when I described chemo as brutal. Chemo, no matter the type, is poison. You poison your body over and over to shake up your cells and prevent cancer from forming in the future. In my case, I was young and thought that chemo wouldn’t be aggressive. It ended up the complete opposite – they went hard on me because I was young and they knew that I could take it. I couldn’t have made it through those seven treatments without my oncologist. He saw me at my lowest, most painful and horrible moments. There were appointments where I would try to negotiate ways around the pain (there weren’t any). There were days when I told him that my body couldn’t withstand many more rounds. I went to him with questions and topics for discussion and he always took the time to have an open dialogue. He never missed an opportunity to reassure or support me. I trusted him with my life – I still do – and that trust is what made all the difference. He made all the difference. The day I’m discharged from his care will be a very sad day indeed.
Support YourselfYour health is just that – yours. Advocate for yourself! Ask questions and discuss the answers. Collaborating helps both doctors and patients alike. I detest pity – I refuse to give or receive it. Moments of doubt, fear, sadness, anger or regret? Sure. Pity? Never. To me, it’s a useless emotion. Prior to beginning chemo, you must attend Chemotherapy Education. If you think I tried getting out of it, you’re right. I decided I wanted to attend on my own. Friends and family had been great about attending all my appointments, and I knew that I could handle this one solo. I walked in to the room and it was full of people – none of them near my age. As usual. I approached the woman with the clipboard and gave her my name. She replied by asking me who I was supporting. I gave her my name again and pointed to the chart. She asked me a second time who I was there to support. I said, myself, pointed to my name on the list and asked for my education package. I was irritated that she didn’t clue in sooner. Her face dropped and she handed over the file. I ended up sitting next to the only other person in the room who didn’t have anyone with them. She was a 50 something going through her second battle with cancer. We were a perfect, somewhat sarcastic, pair – she even took my question seriously when the topic of sex during chemo came up and I blurted out, "REALLY?!" Having the support of friends, family and doctors is more helpful than words can describe. But perhaps even more important is showing up for yourself. Cancer patients or non-cancer patients – we all have moments in our lives where we’re forced to put up or shut up. Unfortunately, in the case of cancer patients, those moments are plentiful. I’ve felt my blood pour down my back and the intense sting of my skin being cauterized. I’ve tasted chemo and had a drain pulled from my body that was longer than my forearm. I've been on a surgical table alone and cold more times than I ever thought possible.
Was I in pain? Did I cry? Was I angry, resentful and terrified? Yes to all. But I showed up.The point isn’t how deep you dig to find your strength, it’s that you dig at all that counts. During chemo and the surgeries, supporting myself came mostly in the form of managing physical pain and making extremely difficult decisions. Now, self-care comes in the form of psychotherapy. After quite a bit of searching, I found a therapist who I click wonderfully with and my biweekly appointments with her have become a beautiful part of my self-love routine. She guides, reassures and teaches me even more ways to support myself. #progress
Cassandra Umbriaco is a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com
Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna.
How to make it through the holidays
Set realistic expectations
Treat yo self
Focus on the important things in life
Reach out as needed
What is lymphedema?Lymphedema is an accumulation of fluid (lymph) in soft body tissues, due to impairment of the lymphatic vessels. This build up of lymph causes swelling called lymphedema. The lymphatic system carries a clear fluid called lymph, which drains out from tiny blood capillaries to lymphatic vessels throughout the body. Lymph contains water, fats, white blood cells and other components . Lymph from tissues and organs drains into the lymph vessels and is carried to the lymph nodes where it is filtered. The collected lymphatic fluid is eventually returned to the blood stream via the subclavian vein. For breast cancer patients, lymphedema might occur in the arm of the affected breast, hand, trunk, back or chest wall.
How do I get lymphedema?Cancer treatment can affect the fluid drainage channels of the lymphatic system. When axillary lymph nodes are removed during breast cancer surgery (with sentinel node biopsy or axillary dissection), or are treated with radiation, some of the lymph vessels can become blocked or can disappear altogether. This blockage may prevent lymph from leaving the area and will overwhelm the remaining pathways, resulting in a backup of fluid into the tissues. Lymphedema is a chronic condition. It does not get better with time unless detected and treated early. The swelling might be so subtle that you can not see it but it might change overtime, possibly leading to a larger limb/fingers.
When does lymphedema appear post treatment?Lymphedema can appear immediately after treatment but it generally appears months or even years after the end of treatment.
Statistics on breast cancer patients getting lymphedema, average onset of lymphedema:It is estimated that 20 to 30% of people will have lymphedema in the arm after breast cancer treatment that include lymph node surgery and radiation to the lymph nodes. ................. Next month, we will tell you what are the risk factors for developing lymphedema and what are the benefits of proactive lymphedema care. For more lymphedema info click here.
Emmanuelle Ravez Gomez is a RMT and Combined Decongestive Therapist specialized in the treatment of lymphedema at her practice The Body Mind Clinic.
A glossary of the breast cancer terms you have questions about.
Adjuvant-therapyAdjuvant therapy is a secondary method of treatment that is performed after the primary treatment method to lower the risk of the cancer returning. Examples include: chemotherapy and radiation therapy.
Advanced Breast CancerAdvanced breast cancer is another term used to describe metastatic breast cancer (see definition). It is not a different type of breast cancer. Rather, it is the most advanced stage (stage IV) of breast cancer.
Advanced Care PlanningAdvanced care planning is the process of deciding ahead of time the kind of health and personal care you want in the future if you were to reach the point where you can no longer speak for yourself.
Axillary Lymph Node DissectionLymph nodes are small glands located in the underarm area. When someone's lymph nodes are removed it's called an axillary lymph node dissection. This surgery is usually combined with a mastectomy (see "mastectomy" definition).
BenignBenign is an adjective used to describe a tumour that is non-cancerous.
BiopsyA biopsy is the removal of tissues and/or cells to be examined by a pathologist (see "pathology" definition). This is usually the only way to tell for certain if a lump in your breast is benign or cancerous.
BRCA genesThere are two BRCA genes: BRCA 1 and BRCA 2. Everyone has them and they protect us from getting breast and ovarian cancers. However, BRCA gene mutations can be inherited, which actually increase a person's risk of developing these cancers, as well as prostate cancer in men. Women with BRCA gene mutations have a 40%-85% chance of developing breast cancer.
Breast CancerBreast cancer is cancer (the overproduction of cells) produced in the breast tissue. The majority of people diagnosed with breast cancer have random mutations arising during DNA replication in normal, noncancerous stem cells.
CarcinomaA carcinoma is a type of cancer that begins in skin cells or in the tissue lining organs like the liver or kidneys.
CDK InhibitorsA CDK (cyclin-dependent kinase) inhibitor is any chemical that inhibits the function of CDKs. They are used to treat cancers by preventing the over proliferation of cancer cells. They are also called AT7519M. Right now there are many breakthrough breast cancer CDK inhibitors coming to market.
ChemotherapyChemotherapy (or chemo for short) is a type of cancer treatment that that stops cancer cells from dividing or kills them altogether. Chemo has many forms, like: an injection, a pill, or infusion.
Clinical TrialClinical trials are a way to test new medical advancements (treatment, prevention, screening, diagnosis, etc.) in humans before making them readily available to all.
DCISDCIS (ductal carcinoma in situ), occurs when abnormal cells are found in the lining of the breast duct, but have not spread to other parts of the breast tissue (non-invasive).
De NovoDe Novo is a term, often associated with metastatic breast cancer (see definition), to describe a person's first occurrence of cancer.
EBC (Early Breast Cancer)EBC is breast cancer that is contained in the breast. It has been detected before it's spread to the lymph nodes or the armpit.
End of Life CareEnd of life care is treatment that focuses on improving a patient's quality life after their illness has become terminal and/or incurable.
Estrogen Receptor PositiveEstrogen Receptor Positive (ER+) is used to describe breast cancer cells that may receive signals from the hormone estrogen to promote their growth.
FECFEC is a chemotherapy treatment that combines three chemotherapy drugs: 5 fluorouracil, epirubicin, and cyclophosphamide - which help stop cancer cells from growing or kill them altogether.
GenesGenes hold a person's DNA and are the basic function of hereditary.
Genetic CounselingGenetic counseling is a series of conversations between a trained health professional and a person who is concerned about their risk of inheriting a disease.
Germline testingGermline testing (also known as genetic testing), usually occurs after genetic counseling to determine a persons familial risk of cancer.
HER2If you're HER2-positive, your cancer cells make an excess amount of the HER2 protein. Originally made to control a breast cell's growth, when the HER2 protein doesn't work properly, breast cells can overproduce. This breast cancer tends to be aggressive, but there have been important breakthroughs in treatment.
High RiskHigh risk refers to the certain factors that increase a person’s risk of developing breast cancer – more so than just the average person. They include: genetic, familial, and personal factors.
Hormonal TherapyHormone Therapy (HT) uses drugs to block the production of estrogen and other female hormones that promote the growth of certain kinds of cancer cells after surgery.
A program that gives special care to people who are near the end of life and have stopped treatment to cure or control their disease. Hospice offers physical, emotional, social, and spiritual support for patients and their families. The main goal of hospice care is to control pain and other symptoms of illness so patients can be as comfortable and alert as possible. It is usually given at home, but may also be given in a hospice center, hospital, or nursing home.
IDCIDC (or invasive ductal carcinoma) is a type of breast cancer that starts in the milk ducts of the breast and has spread to surrounding breast tissues. It is the most common type of breast cancer.
ILCILC (or invasive lobular carcinoma) is a type of breast cancer that starts in the milk-producing lobules of the breast and has spread to surrounding breast tissue. It is the second most common type of breast cancer, next to IDC (invasive ductal carcinoma).
ImmunotherapyImmunotherapy is a form of cancer treatment the body's immune system to fight cancer by boosting it with treatments and substances that improve the body's natural response to illness.
Invasive Breast CancerBreast cancer becomes invasive when it has moved from where it originally started to now affect surrounding normal tissues. The most common form is invasive ductal carcinoma (see definition).
Locally AdvancedLocally advanced is a term to describe cancer that has spread from its original location to surrounding tissue or lymph nodes.
LumpectomyA lumpectomy is a breast cancer surgery that removes the cancer and part of the abnormal surrounding tissue, but not the entire breast.
LymphedemaLymphedema is a common side effect of cancer treatment condition where the lymph nodes produce excess fluid, causing them to swell.
MalignantMalignant is an adjective used to describe a tumour that is cancerous. They can destroy and spread to surrounding tissues.
MammogramA mammogram is a form of breast cancer screening where an x-ray is taken of the breast.
MastectomyA mastectomy is a surgery done to remove part or all of the breast that has cancer.
MenopauseMenopause occurs when a woman stops having menstrual periods because her ovaries no longer produce hormones. Natural menopause usually occurs around the age of 50. Sometimes, a side effect of cancer treatment for young women is early menopause.
MetastasizeWhen cancer cells metastasize, they spread to other parts of the body.
Metastatic Breast CancerMetastatic breast cancer (MBC) is cancer that's spread to other parts of the body. When breast cancer is found outside the breast, it is still made up of breast cancer cells and still considered breast cancer.
NEDNED (or "no evidence of disease") is a term used when tests show no presence of cancer cells in someone who was previously being treated for cancer. NED has replaced the term remission because it is more accurate.
Neo-adjuvant TherapyNeo-adjuvant therapy usually occurs before the primary cancer treatment (ie/ surgery). It includes chemotherapy, radiation therapy, and hormone therapy used to shrink the cancerous tumour.
NeutropeniaChemotherapy treatment can often kill non-cancerous cells in the body in addition to the cancerous ones. Neutropenia is often a side effect that occurs when the body’s white blood cell count is too low because of this.
OncologistAn oncologist is a doctor who specializes in diagnosing and treating cancer with chemotherapy or in some cases immunotherapy.
OophorectomyAn oophorectomy is surgery to remove one or both of a woman's ovaries.
Palliative CarePalliative care given specifically to people suffering from a life-long or life-threatening illness. This kind of care focuses on improving patients' quality of life (see definition), focusing on all aspects of having an illness: physical, psychological, spiritual, etc.
PathologyPathology is the study of diseases by examining tissues under a microscope.
Peer SupportPeer support connects people living with cancer or people with other illnesses to others who have gone through it. Peer support is not based on psychiatric models and diagnostic criteria.
ProgesteroneProgesterone is a hormone that plays a role in the menstrual cycle and pregnancy. If the breast cancer is Progesterone receptor-positive (PR+), that means its cells may receive signals from progesterone that promote their growth.
PrognosisA prognosis is typically given by a doctor. It indicates the likely course that a disease or illness will take, including the chances of it recurring.
QOLCancer treatments and clinical trials are often concerned with improving patients' quality of life (QOL). This refers to their overall enjoyment of life and their wellbeing.
Radiation TherapyRadiation Therapy uses high-energy X-rays to destroy any cancer cells that may remain in the breast after surgery. This reduces the chance of recurrence.
SituSitu is used to describe a tumour, cancer, etc. which is confined to where it first started. In other words, it hasn't spread. For example, ductal carcinoma in situ, is a breast cancer found in the milk ducts which has not spread to other tissues or parts of the body.
StageStage is a term used to diagnose how advanced breast cancer is. It's determined by tumour size, the number of lymph nodes affected, and whether it has spread to other tissues and/or parts of the body.
SurvivorshipThe state of being a survivor. Survivorship refers to a community of individuals who are living their best lives post-cancer and the resources and tools they can use to do so.
TamoxifenTamoxifen is a cancer drug used to treat and/or prevent certain types of breast cancer in women and men. It's often used to treat ductal carcinoma in situ (see definition) or to prevent breast cancer in women who are high risk (see definition) for developing the disease.
ThriverThe term "thriver" is used in the metastatic breast cancer (MBC) community to differentiate from Survivor. Survivor can imply that cancer is cured and they are no longer living with the disease. Those with MBC live with their cancer but can be thriving.
TumourA tumour is a group of abnormal cells that forms when cells divide and multiply too quickly or don't die when they should. Tumours can be benign (non-cancerous) or malignant (cancerous).
UltrasoundAn ultrasound is a breast cancer screening method that uses sound waves to examine the tissues. It tends to be a better screening method for young women under 40, who's breast density prevents tissues from showing up properly on a mammogram.
Values (patient values)Patient values refers to what patients value when it comes to cancer treatment and how they measure quality of life (see definition).
Washout PeriodWashout period is a term used to describe the process where a patient in a clinical trial (see definition) is taken off a drug in order to give it time to leave their system.
XelodaXeloda is a cancer treatment often used for stage III colon cancer patients. However, it's also often used to treat metastatic breast cancer (see definition) in women who's situation hasn't improved with the use of any other anti-cancer drugs.
The Rethink definition of young refers to women at a specific stage of life when there are demands on family, friends, careers, education and fertility. Most of these women are pre-menopausal. Rethink believes that the advocacy work we do with young women helps to improve access and create change for all women.
ZoladexZoladex is a hormone therapy drug used to treat estrogen receptor-positive breast cancer (see definition) by halting the production of estrogen in the ovaries.
for more terms and definitions, check out this online glossary.