When you are told you have cancer then you probably don’t feel much like fighting. The initial shock and awe can incapacitate your whole being. Your senses simply shut down.
I was completely overwhelmed after I had been told I had incurable Stage IV head and neck cancer and probably had just two months to live. I couldn’t accept what was happening to me and felt numb to the core, desperately vulnerable and utterly pulverised.
I had already had a Stage IV head and neck cancer ten years before and I thought I was out of the woods. I’d been through hell then losing my tongue in a 15-hour operation followed by 35 rounds of radiotherapy and chemotherapy. They threw the kitchen sink at me and I survived but the collateral damage was life-changing: speaking, eating and swallowing were now major daily challenges and my jaw irreversibly damaged because of osteoradionecrosis.
But this time, I was told a different cancer had grown in my neck and it was incurable. Shock and awe quickly moved to shock and denial and then to shock and anger.
The first time I was told I had cancer I was the classic passive patient and just let the medical team get on with it. I turned up for appointments, I did as I was told and just towed the line. What else could I do?
Well, the second time around, I realised there was plenty I could have done differently. I could have asked more questions, I could have asked for a second or third opinion, I could have researched and been more pro-active. My experience up to this point was deferential, asymmetrical and unbalanced.
I’ve learned the hard way that as a cancer patient, you have to make a nuisance of yourself (in a good way that is!) to get heard and get noticed. On occasions, you have to be a persistent thorn in the side of a system that often doesn’t serve the best interests of patients. That might not come naturally to you but this is your life and if the system is letting you down in any way, you have every right to kick up a fuss. If your CT scan hasn’t been reported on for 3 months then you make what waves you can to get heard (and yes, this has happened to me!).
I’m not advocating painting placards and starting a riot on an oncology ward with fellow patients but I am championing being a self-advocate.
You have to be your own cancer champion and for that you have to be a polymath patient and be willing to go beyond the traditional patient expectations and the paternalistic model of the doctor-patient relationship.
You are not a passive recipient of healthcare, you are an active and equal partner in addressing your health and wellbeing. This means being active in the treatment of your illness and the recovery of your health. It’s about being a co-catalyst in your disease management.
Of course, you don’t have to fight your own corner because you may be fortunate enough to have others on your side willing to provide the back-up. Close family and friends are the natural foot soldiers here.
But not everyone has this option and even if you do, the pressure on your nearest and dearest can be heavy and exhausting. It is incredibly hard for them to shoulder the responsibility.
Other options are available such as a specialist cancer nurse and some patients even have a cancer doula to provide the sharp elbows when needed.
Clearly, you can’t go it alone all of the time, everyone needs a ‘wingman’ and everyone deserves a cancer champion but don’t be afraid to stand up for yourself and be your own support. A considerable chunk of the cancer experience is DIY.
Self-advocating as a cancer patient is the active process during which you recognise your worth and assume the responsibility of clearly communicating your needs, expectations and goals to others. How far you go is up to you and at the end of the day, it is a choice – you can be an advocate with an ‘uppercase A’ or a ‘lowercase a’ or let others do the advocating for you.
But don’t be afraid to ask ‘awkward’ questions. Your life is on the line, not the person sitting opposite you. Probe, discuss, negotiate and challenge. It is empowering and will feed your determination to live and help you take charge of your own health and wellbeing. We can make better decisions when we are well-informed.
Try not to be intimidated by the expertise of your doctors – they don’t know everything. They also hold speciality biases and epistemic injustice in oncology is not uncommon.
So, when it comes to a cancer consultation, find a new question that has never been asked before. Challenge the status quo and get everyone thinking outside the box. Your doctor’s recommendation might not be best for you.
Where you have surgery and who does it matters so ask whether you will be treated in a high volume hospital by a high volume surgeon. When it comes to treatment, ask what the current treatment guidelines recommend for patients with your stage of cancer and who checks.
This sounds confrontational and sometimes it is because it has to be to get heard but for the most part self-advocating is a way of promoting mutual participation and equal power. You can help to foster further discussions and new approaches by being a good nuisance!
To stay alive and thrive, you do what it takes so you become creative, you get busy and start to research, cover new ground and uncover new thinking. Through self-advocating, you speak up for yourself, your interests and anything else that is important to you and this can lead to patient-driven quality improvement different across systems.
Always remember that you are a champion and it your voice and experience matters. You can be a change agent not only for yourself but many other cancer patients. Time to pull the lever, know your worth and stand up for you because it is all part and parcel of good cancer citizenship.
PART II – LIFE WITH CANCER AND TREATMENT (please see here)
PART III – LIFE WITHOUT A STOMACH (please see here)
PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)
PART VI – CURRENT STATE & FINAL WORDS (please see here)
PART VII – SILENCE OF THE MOTHERS
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PART VII: SILENCE OF THE MOTHERS
As I mentioned earlier, I am the older sister of Sevtap Savas and I wanted to write separately about my mom.
I shared my stomach cancer story with you.
Now I would like to introduce you to my mother, who has always been by my side and taken care of me throughout her life and throughout my treatment.
MY MOTHER AS A CAREGIVER
My mother’s name is Nimet. She was my Nimet Sultan.
My mom and Sevtap
Unfortunately, we lost my mother, with whom I lived together in the same household for 31 years, due to cancer in 2021. My mother was the most valuable person in my life. My mother was a lively woman who always supported her children, gave us morale, and generously offered her never-ending love. When I was diagnosed with cancer, she showed such a strong stance that it gave me strength, too. She never showed her pain or cried.
While my beloved mother’s life was going on normally, she suddenly found herself in hospitals in 2009. We were both caught off guard by this. During the majority of my difficult and very long treatment, which started with my surgery eight days after my diagnosis, she had to stand strong without a supporter and keep up with everything without the luxury of getting tired.
She accompanied me for 11 days during my surgery and for 14 days when we returned to the hospital due to anesthesia pneumonia that occurred two days after my discharge. Even though my brother was with us for most of this long period, my mom never had the opportunity to go home and get some rest. My mom could neither sleep nor eat properly for 25 days. Every morning at seven, doctors visited the rooms and at that time all the attendants were removed from the section where we were sleeping. These rounds were the only time my mother left me alone in the hospital.
I must admit that I was a difficult patient. My mother never whined or said she was tired, and she tried her best to feed me. I am used to be a picky eater.
Cancer treatment is a treatment that requires constant hospitalization. My first chemotherapy was a short procedure consisted of going to the hospital at appointment time for five days and given by injection into the vein on my hand. However, before this, I had to go to the hospital and give blood to determine whether my blood values were suitable for chemotherapy, have my chemotherapy drugs prescribed according to the results, and deliver the drugs to be prepared at the hospital pharmacy the day before.
My mother came to the hospital with me and was with me throughout all these procedures. I was taking care of the hospital paperwork. After the chemotherapy session, I had to get an injection in my abdomen for ten days to increase my blood values. For this, we were going to a private hospital close to my home. During the three weeks after the session, we did not go to the hospital for just a few days.
And at the same time, before the next chemotherapy session, I had to make a CT appointment for my monthly check-up, have my medication prescribed, and have other requested tests done. Before the CT scan, I had to drink 1.5 liters of medicated water within an hour. As I explained in my cancer story, drinking water was torture for me. My mother was making me drink by saying, “Come on, daughter, one more sip.” Then I had to show the test results to my oncologist.
Just thinking about going to and from this hospital non-stop gives me a headache. I can’t even imagine how tiring it was for my mother.
In this busy schedule, she had to do the grocery shopping, clean the house, prepare the meals I could eat, and welcome and host the visitors who came to the house. Many of my friends from out of town were coming to visit me.
My mother was giving hand sanitizer to visitors when they first entered the house. She wouldn’t let them sit close to me.
I used to be sensitive to scents. With chemotherapy, this increased to very high levels. When my mother prepared something for me to eat, I would reject it before even entering the living room, saying I could not eat it because I was nauseated. There were many times when she would prepare 3-4 types of food in a row and I would reject them. She then would tirelessly prepare another meal.
I lost 5 kilograms after my surgery and only 10 kilograms during my chemotherapy. This was the most important indicator of how well she took care of her daughter, who had no stomach, but could only eat a bite or two, and whose esophagus was irritated due to chemotherapy.
My mother was a very conscious and intelligent woman. She would never warm up the food I had eaten and bring it back to me because it might produce bacteria. She rather would cook again. She removed from my life everything that would not be good for me – food, drink, clothing, and everything else.
During my radiotherapy treatment, she used to come to the hospital with me five days a week, and on the fifth day, we used to go to Hacettepe Oncology Hospital together to renew the medicine in the chemotherapy pump attached to my port.
My mother used a cane to walk more easily, but she got tired after standing on feet for too long. Not once did she say “I’m tired.” When my sister Sevtap came to visit us in the middle of my radiotherapy, she had a chance to rest a little.
My new chemotherapy, which was changed after my radiotherapy and consisted of very heavy drugs, was very difficult. It took 5.5 hours to administer the medications. My mom would wait patiently next to me. Considering the time she dressed me for the chemotherapy session, the taxi ride to the hospital and back, it took seven hours.
This chemotherapy was so severe that I was writhing in pain. When I used the bathroom, my mom held me so I wouldn’t fall.
When I made the slightest noise at night, she would instantly wake up and come to me. One night I called my mother and said, “Don’t leave me.” My mother said, “I will never leave you, you are a part of my life,” and I fell asleep again.
My mother only showed her sadness when I shaved my head. This was her way of showing the pain she was experiencing.
I was taking my mother out to dinner during the three-week break after chemotherapy session so that she wouldn’t feel like she was imprisoned between home and hospital.
It was a great responsibility to care for a cancer patient and be there for me wherever she could. My mother had tremendous willpower. It was a handicap for my brother to live in another city. It wasn’t easy to face everything alone.
My mother had the biggest struggle during my diagnosis and treatment phase, which lasted nearly a year. My mother’s extraordinary care did not end with the end of treatment. Until her death, she continued to take the best care of me, as she did before my illness. My mother was someone who loved her children very much, was happy to be with us, and put her love into everything.
After my treatment was completed, she was with me during all my follow ups. If my friend, with whom I always went to my oncologist appointments, was not available, my mother would accompany me. My mother was always there for me when my friend moved to another city.
My oncologist loved teasing both me and my mom. My mother was around 1.50 cm tall. He used to joke with my mother that he would make her taller. One day, while I was waiting for my turn with my mother in the waiting room, my oncologist came out of his room and when he saw me, he said, “Ooooo, the patient who is most wondered about in and around Balkans and Europe and her mother have arrived.” Naturally, all the attention of the other waiting patients and their relatives was directed to me. In a sense, I was my doctor’s success story.
I loved buying gifts for my mother. She would be very happy to receive gifts. We would go to restaurants, bakeries, and shopping together. Sometimes I would make her upset. When I realized that she was upset with me, I would go and hug her, make jokes and make her laugh. We would travel together whenever we got the chance. In the years before and after my treatment, when I realized she didn’t want to cook, I would order her favorite meals.
These photos were taken when we went to another city for a friend’s wedding in 2015. I arranged a taxi and we stayed for 3 days, visiting almost every part of this city famous for its food and tasting its food.
After my treatment was over, I went on a vacation with my mother, my sister and my nephew and had a lot of fun. We had other holiday getaways. I’m so sorry I didn’t take her to more trips.
In cancer, the attention is generally on the patient. Little emphasis is placed on the person caring for the patient.
While we, the patients, experience the side effects of the treatment, the storms and pains that the caregiver goes through, the weight of having to stand strong and the responsibilities placed on him/her are a long process that is very difficult to bear. Can the caregiver’s lack of support, physical fatigue, and most importantly, the psychology that has taken a big blow while the patient is receiving treatment be ignored?
What was my place in this question I asked myself? What could I do? I can’t find my answer. ☹
One day, while having dinner with my mother, I was looking at something on my mobile phone. When there was silence, I looked at my mother, her head was leaning against the wall and she had fainted. I panicked so much that I started doing the Heimlich maneuver, completely unconsciously. I don’t remember how hard I tried. At the same time, I was shouting “mom, mom.” Then my mother coughed and coughed up bits of food stuck in her throat. My hands and feet were shaking with panic and fear.
How could I know that after about 3 years, I would experience the greatest pain and lose her.
When I retired 5.5 years ago, I made a promise to my mother. I told her that I had more time now, that we would have better days and that we would travel together and do the things we wanted. But I could not fulfill this promise.
MY MOTHER’S DEATH BECAUSE OF CANCER
I retired in the summer of 2019. My brother took us to the summer house in the middle of summer. My mother loved the bougainvillea flower very much. We bought a sapling and planted it together. The sapling, which was around 50 cm tall, has now grown up to the 2nd floor. I look carefully at this souvenir I inherited from my mother.
We would go out to the front of the house in the evenings. My mother would take a light walk and we would watch the sunset.
Then we received sad news. My mother’s brother was diagnosed with cancer. This was very sad for my mother. We called and asked for his treatment to be done in the city where I live. It was not possible for my uncle to receive good treatment in our hometown. Unfortunately, we lost my uncle within a year.
It was very hot in the summer house we went to with my mother in the middle of summer 2021. My mother had lost her appetite. Since I lost my appetite, I attributed this to the heat.
One day, we went to the market for shopping with my mother. I bought lots of my mother’s favorite foods. The driver of the taxi we always take said he was busy and would send us another taxi. After waiting for a long time, my mother said that since she could not stand for long, she would sit on the wall 3-4 meters behind us and wait.
While I was waiting for the taxi, I heard a sound. When I looked back, I saw that my mother had fallen. I can’t remember how I ran to her. I was screaming in panic. People came and tried to help. I remember saying call an ambulance.
My mother had a semi-loss of consciousness. Over time, she started making eye contact only with me. The tumor had metastasized to the part of his brain where her motor system is located. The neurosurgeon said that surgery could not be performed in that area. I thought there were other treatment methods. We were looking for solutions.
We lost my mother within 2 months. She spent the last month in intensive care. I always believed that she would get better. Meanwhile, Sevtap came to Turkiye. Doctors said my mom’s condition was not getting better. We had the opportunity to visit my mom as one person only and for 5 minutes only, three days a week. Doctors said she was unconscious, but I didn’t believe him. The last time I was near her, my mother shook my hand even though her eyes were closed.
When I visited her, I was telling my mother that she would get better, that we would go home again, that my brother and I were waiting for her outside because the doctors did not allow us to go inside, and that she should not worry. I was telling her that I loved her very much and kissing her hands.
My mother used to get anxious when I wasn’t around. When I left her after my visits in the hospital, I would cry in an empty place on the stairs because I would think that my mother would be afraid without me.
I had my first panic attack while waiting for Sevtap with my brother at the airport when she arrived from Canada. It was the pandemic period, and they were not letting in people waiting for passengers. My heart started to pound; I couldn’t breathe. I sat on the floor because I felt like I was going to faint. My brother was confused about what to do. One of the people waiting for passengers came to us. He said he was a doctor and examined me. He said, “You are fine, you can call me if you need.”
I wasn’t in a position to care about myself. Hopes for my mother were diminishing and the rebellion inside me was growing like a mountain. We felt very helpless. They said we were losing my mom.
My nephew came to see his grandmother. We went out to buy something. While I was going to the car with my sister and nephew, I sat down again when the same symptoms occurred. We went to the emergency room. I didn’t know it was a panic attack at the time.
And one morning my phone rang.
The light in my mother’s eyes was now extinguished.
We went to our hometown for her funeral. We were in deep silence and pain. The next day at the funeral, I was talking to my mother as I hugged her coffin and cried.
About ten days later, we returned to Ankara to send my sister Sevtap back to Canada. My brother said he couldn’t leave me here alone and took me back to our hometown.
How could I not understand that my mother had cancer when I was a cancer patient for years? I was thinking and couldn’t find any signs. What did I do wrong, what did I skip? I felt like I was going crazy.
While we took my mother for a health check every year, we did not go to crowded hospitals during the pandemic to avoid catching Covid. My mother had no obvious illness. Did I make a mistake?
I had cancer, we recently lost my uncle to cancer. Did my mother have to be too? I was asking why, why… Why my mother!
I had never rebelled in my own illness. For my mother, my rebellion was endless…
I would visit my mother’s grave a few days a week, talk to her and cry. At my brother’s house, I kept my screams inside and cried silently.
Then the panic attacks started again. We went to a psychiatrist. He made adjustments to my medications.
I stayed with my brother for about three months because he did not let me be alone. Meanwhile, the psychiatrist had stopped some of my medications. When I didn’t want to stay any longer, my brother took me home and right after my brother returned, I had another attack one after another. Because my home meant my mother.
I went to the psychiatrist and my attacks stopped with another medication he gave me. I still have attacks from time to time, but not as often as before.
Every night I was crying and apologizing, saying, “Mom, forgive me, I couldn’t keep you alive.” I was wondering why she had to go. My mother deserved good days to live. I was asking what my mother was doing in the grave. My mother would be afraid without me. I needed my mother back.
After she died, I could not look at where she lay down to watch television after finishing her house chores. I still can’t look at where she first fell in the summer house.
I used to watch Korean dramas to clear my mind. When I laughed at a funny scene, my mother would say “laugh, my daughter, laugh more.” She would love it if I laughed, as I had almost forgotten how to laugh due to my depression.
I neither listened to music nor watched TV series for a long time. With my sister’s encouragement, I started receiving therapy. I went to therapy except for the summers for nearly two years.
I started watching TV series again. When I start laughing at a funny scene, my laughter turns into crying because my mother’s words would come to my mind.
My psychiatrist asked me this question one day. “You had cancer and recovered. You lost your mother to cancer. What kind of feelings does this create in you?”
That was the crucial question. I felt guilty. I lived, but my mother did not have this chance. I felt like I had committed a crime against her by being alive. When I told my therapist about this, he said let’s focus on this, but I could not make any progress on this issue.
We three siblings could not get over the loss of our mother. This great pain we are experiencing is still a deep wound within us.
The above photo of my mother is one of my favorites. The sparkle in her eyes, the joy of life, the happiness…
Monica in her arms was 4 months old when she came to us from the street. My mother raised her. There was great love between them. Monica would sleep hugging my mother’s legs. My mother wouldn’t get up even though she had to, so that Monica wouldn’t wake up.
My mother was a very selfless, loving woman. Some mornings I woke up with joy because I think I will see my mother. I think that perhaps she already had her breakfast. But, no…. Big disappointment….
The external memory attached to my mobile phone broke down and nearly 30 GB of my photos were deleted. I even went to programmers who could recover deleted files, but I couldn’t get any results. Gone are photos from at least the last six or seven years, including videos of my mother. I am so very sorry.
TO MY MOTHER
My dear mother, I miss you so much. Rest in peace. Don’t worry about us. We are fine. Monica and Mia (my cat) are good too. Monica continues her mischief. We will come to visit you when Sevtap comes to Turkiye. You are our everything. We love you very much. You are in our minds and hearts every day. And you will always be there.
PART II – LIFE WITH CANCER AND TREATMENT (please see here)
PART III – LIFE WITHOUT A STOMACH (please see here)
PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)
PART VI – CURRENT STATE & FINAL WORDS
PART VII – SILENCE OF THE MOTHERS (please see here)
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PART VI – CURRENT STATE & FINAL WORDS
MY DAILY LIFE AFTER TREATMENT
While life goes by, a significant part of my life is spent in hospitals. After my treatment ended, I went for check-ups every month for a year. Immediately after the check-up, I had to do the next check-up, make appointments, and donate blood for creatinine measurement before CT. The following years passed in the same way.
Meanwhile, other diseases entered my life. I last had a lung infection over a year ago. I had pneumonia 2 months ago. A pulmonologist also joined the doctors I go to regularly. I have had thyroid checks for 15 years. I also go to the psychiatrist. A few weeks ago, I had a problem in my right eye. I will go for check-ups for that from now on.
My sister jokes that “I get better healthcare than the Queen of England” 😊
From the first year onwards, among all the examinations, you always think about what will happen in the next examination. You feel more comfortable having annual check-ups. It is a constant reminder that not having a stomach requires careful eating and drinking.
My home in Ankara has become synonymous with hospitals for me. I adjust the medical appointment dates accordingly so that I can go to the summer house during summer months.
Low or high values in some of my blood tests affect my depression. I say “come one by one” but they don't listen to me :-) .
While I was preparing this article, my brother came from out of town to visit me. I had thyroid control and he supported me. I had a thyroid biopsy two days ago. The endocrinologist showed my nodules on ultrasound and said it looked like a potato field :-) Sweet potatoes? :-) Purple potatoes? :-) Yellow potatoes? :-) .
We started medication because my T4 level, one of my thyroid hormones, has been low for a long time. These low levels cause extreme fatigue and I feel dizzy when I stand up. My doctor asked for a check-up after 2 months. I have been on an iodine regime for 8 months. It was found to be extremely high in the tests. Still high :-( It causes low T4 hormone.
My life in Ankara is quite routine. I'm usually at home and spend time with my hobbies. I never watch television. I love listening to music. Sometimes I go on a song hunt You also do things that make your life better.
I love being in the summer house because there is no hospital on the island except for the health center and one family doctor. I feel free because I don't have to go from hospital to hospital.
Another thing that makes me happiest at the summer house is taking care of and feeding stray animals. Last summer, I stayed on the island for the first time for nearly 5 months. I was doing pretty well. I have an interesting relationship with stray animals. When I come across a cat I haven't seen before while returning from somewhere, I say, "Come on, let me feed you." They walk beside me and come with me.
I don't swim much in the summer. In September and October, I walked by the sea a lot and collected stones and seashells. One day, 3 pitch black dogs and 1 brown dog in the distance on the empty beach started running towards me, barking. They didn't attack me, they just surrounded me, put their paws on my chest and asked me to pet them. One of them stuck his head inside my fleece coat. I loved them all, I talked to them. Another day a dog hugged my legs. 15 min. He didn't leave me 😊 I love them so much.
I have walked away from most of the toxic people in my life. This can be perceived as relative loneliness. But it is not. Being alone is not a problem for me, except for the absence of my mother. I would rather be alone than exposed to toxic people. I never get bored, I have so much to do. In the summer, I make home vinegar from my fruits. I don't use it, but my brother likes it very much. I give away some of it. Last summer I tidied up the front yard of the house. It took me a lot of time due to my fatigue, but I was happy while doing it.
One of my dearest friends told me that I was a geek. I like and enjoy doing research on a subject that I am interested in and curious about. I am not antisocial, on the contrary, I can communicate with people very quickly. Mine is a conscious loneliness. Because I'm tired of people's selfishness, their efforts to present themselves as something they are not and cannot be, and their desire to dominate me. My independence is very important to me and I do not like and do not want people in my life, who try to interfere with my personal space.
After all, we are members of a society and we have to do many things even though we do not want to. The important thing is to minimize these as much as possible and focus on things that will make us happy. Sometimes doing nothing is also an option :-).
LAST WORDS
The first thing that keeps me alive is that my mother took very good care of me, her support and the support of my siblings, the second is having access to very good doctors, and the third is having high morale, according to my oncologist.
One of the reasons why I tell my story of signet ring cell type stomach cancer, which has a low survival rate, is that we always have a chance of recovery, no matter what type of cancer and at what stage it is.
I know there are some of you who are going through much harder things than me. We are not just statistical data. We may surprise some scientists by not being where these data indicate, and we may change the statistical data with the help of advancing medical science. We must believe in our own power.
In this struggle, patients should also demand social support assistance. They should be able to access advanced examinations and specialist doctors as soon as possible, regardless of the disease. The first priority of governments, including my own country, regarding health should be people's right to life and their fulfillment of these requirements.
Since cancer treatment is very long and financially challenging, patients in need should be supported by the governments. I guess I'm asking for too much
Another important issue is, of course, social awareness. For this reason, I find my sister Sevtap's work in this direction very important. I really appreciate how passionately she works for the platforms she leads.
Thank you very much for listening to me in this long story. I am very happy to be among you who share your illness stories here. Stay healthy, happy and well.
Sevtap and I at the airport, when she came to visit us in Turkiye
One great advocate I know in Newfoundland and Labrador (Tracy Slaney) once said that they need a “reliable car” to help travel to and from St. John’s for treatment of his husband, Jim.
I keep thinking about this. Especially on snow days.
Not just a car. A reliable car.
A car that will take you to your destination safely.
While I am not directly doing research in economic impact of cancer, nevertheless, the challenges faced by patients and families – including the financial cost and barriers while receiving care and surviving beyond cancer – are very important for my advocacy and my understanding of the cancer experience.
Here are some of the key points I gathered from this report:
The authors say that they focused on estimates which are based on most commonly diagnosed cancers only. In addition, these estimates may vary among people affected, as well as by province and territory. In addition, not all costs are included, such as those because of psychosocial effects of cancer. Hence, these should be kept in mind while interpreting this information (that is, the average cost per person could be actually higher than these estimates)
Cancer is the leading cause of mortality in Canada. As such, cancer has a substantial cost to Canadian society – both through its cost associated with the healthcare system delivery and the cost shouldered by patients and caregivers
The estimated cost of cancer in Canada for 2024 is around $37.5 billion. This cost is expected to increase in the coming decade, mostly because more people are expected to be diagnosed with cancer and more people are expected to survive cancer
Almost 80% of this cost is shouldered by the healthcare system, while the remaining is shouldered by patients and caregivers. Cost of cancer differs among cancer types, with most common four cancer types claiming almost 50% of all costs (lung, breast, prostate, and colorectal cancers)
Economic cost of cancer per person has been increasing due to factors, such as rising cost of treatment and support services. The overall economic cost of cancer in Canada may have been increasing due to aging population (which increases the risk of cancer) and growing population (the higher the number of people living in Canada, the higher the number of people affected by cancer in Canada)
The cost of cancer for each patient is estimated to be around $33,000 and is likely to mostly happen in the first year following the cancer diagnosis. However, cost of cancer can continue after that time period
Healthcare system costs associated with cancer include those like physician and hospital services/cancer care, some prescription cancer drugs, radiotherapy, chemotherapy and so on. On the average, per patient amount shouldered by the healthcare system is 4 times that of what a patient shoulder ($33,000 x 4 = $132,000)
Cost of cancer shouldered by cancer patients and caregivers include various costs.
For example;
those cost that are directly related to receiving care (prescriptions, devices such as walking sticks and colostomy supplies, home care services, travel and accommodation related expenses, time needed for traveling to and from, or waiting for treatment, insurance payments & copayments)
lost income or opportunities due to sickness/sick leave or caregiving obligations are within the costs associated with cancer, however indirect they may be
psychosocial impact, such as quality of life related costs
7. There are some communities facing systematic barriers to access care and clinical trials, for example, those living in rural areas, low income families, and marginalized communities – these communities may be at increased risk of having cost of cancer. Of note, Atlantic Canada has a high proportion of its population living in rural areas (around 45%).
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So what do we do with this information?
It seems that cancer will continue to rule our lives.
Is there a chance that we can help prevent this?
The authors state that this information will help planning by both the healthcare leaders and families affected.
I agree.
I think we should also focus on additional solutions:
collecting more systematic cancer-related data to come up with more precise estimates; for example, I suspect the cost associated with cancer to be a bit higher in Atlantic Canada than the rest of Canada (because of higher portion of the population living in rural areas) and concentrated cancer clinics/hospitals in urban regions)
preventing and early detecting cancer
removing barriers to access to care and reliable health-related knowledge
increased support to low income families and at-risk communities
removing systematic barriers experienced by marginalized communities
setting regional equity for cancer drug access and clinical trials within Canada
better synchronized inter-provincial and territorial drug coverage
better provincial and territorial insurance plans
better public awareness about cancer, its impacts, and resources/support available to help prevent, early detect, and treat cancers
For better days ahead, we need to combine our hands, hearts, minds, and forces.
Please advocate for yourself and others to prevent, early detect, and treat cancer.
We are pleased to invite all Atlantic Canadians to this free, virtual, and public conference on cancer and Precision Medicine on March 15, 2025!
This conference is organized by the Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC), consisting of 14 members from across Atlantic Canada.
The conference will include speakers representing cancer patients, caregivers, researchers, healthcare and support service providers, leaders, and advocates.
Opening and closing keynote speeches will be delivered by a panel of patients and our special guest (Darrell Fox, the younger brother of Terry Fox), respectively.
Topics include lived experiences of patients and caregivers from various backgrounds, clinical trials in cancer, precision medicine in cancer, clinical and support services offered to cancer patients in Atlantic Canada, and role of advocacy in changing things for the better.
PART II – LIFE WITH CANCER AND TREATMENT (please see here)
PART III – LIFE WITHOUT A STOMACH (please see here)
PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)
PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS
PART VI – CURRENT STATE & FINAL WORDS (please see here)
PART VII – SILENCE OF THE MOTHERS (please see here)
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PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS
MY ONCOLOGIST TAKES ONE YEAR UNPAID LEAVE
During my 6-month check-ups, my oncologist took a one-year unpaid leave from the hospital. I was so sad and shaken. Since my doctor was very important to me, I could not imagine his absence. Due to the stress I was experiencing, I developed skin break ups in my abdominal area.
Fortunately, he opened a private practice before my next 6-month check-up. Now I can make an appointment without any problems. During the years when my oncologist was practicing at the hospital, he would also perform examinations at 5 or 6 am in the morning due to lack of time. I went to him a lot in these early hours.
BEING STUBBORN WITH MY DOCTOR :-)
I have never delayed my check-ups. But sometimes I get stubborn with my oncologist about the tests. He is very detail oriented and does not miss the smallest thing. I didn't want to have some tests done. But I never succeeded :-) Keep trying :-)
HOW DID MY ANNUAL CHECK-UPS DECREASE TO 3-4 MONTHS AGAIN?
About 3 years ago, during my check-up after my mother's death, my CA 16-19 levels, one of the tumor markers, were high. Thereupon, a special MRI was performed on the liver, pancreas and gallbladder area and a gastroenterology consultation was performed along with other tests. Nothing untoward happened, but the check intervals were reduced to 3 months. My doctor only agreed to take a 4-month break at my request so that I could go to the summer house in the summer.
All my tomography and MRI scans were performed at Hacettepe Hospital, with a few exceptions. But 1.5 years ago, for the first time, I could not find a paid private MRI day. They could give a date 3 months later. I had to have it done at a private imaging center for a very high fee. And I uploaded the previous MRI image and the result report to the imaging center's system.
MRI SHOCK
A few days later, the results arrived in my e-mail. When I read it, it said that I had widespread metastases in many parts of my liver. This time I really had a big shock. At that time, I was a devastated person who could not accept the death of my mother and was experiencing the greatest pain of my life. I also had panic attacks that started with my mother's illness.
I made an emergency appointment with my oncologist. When I went, he had already read the results of the examination that had been sent to his e-mail. He told me that stomach cancer will not metastasize like this after many years. He called the imaging center and asked them to examine it again. He asked me to get the MRI images from the center and asked for them to be examined by a Professor Radiologists at Hacettepe Hospital.
When I returned home, I compared the areas called metastases with my previous MRI result. They even interpreted the hemangioma (a benign growth formed by the expansion of blood vessels) that had existed in my liver from the very beginning as metastasis.
When I went to the Imaging Center, they asked me to come back 3 days later for the MRI CD taken there. I said that I did not have time and that I wanted both the CD and the MRI results immediately. And I reminded him that the previous MRI images were loaded in the system.
Frankly, I was annoyed that 3 employees sitting next to each other asked me to wait 3 days to load a simple CD with my imaging results. If I received the CD late, it would cause me to lose time as it would be re-examined at Hacettepe Hospital. This was a waste of my time.
Half an hour later, one of the employees brought the corrected report and the MRI CD. I said I wanted to meet the doctor. They refused, but I insisted. I couldn't remain silent on such an important issue. Our lives are filled with examinations and such a doctor's error was not acceptable.
The doctor came and explained the report to me, stating that she did not interpret the lesion in the right adrenal gland as problematic. However, this didn't matter to me anymore. The MRI would be re-examined at Hacettepe Hospital. Not only would this bring another financial burden, but the consequences of my psychological state would not be easily resolved.
I asked her, "Can you imagine what kind of mood a cancer patient would be in when they see such a result?" I also asked her if this was a control MRI and what she compared it with to reach her conclusion. She apologized to me and said that her staff did not inform her about the previous MRI. I said, as a doctor, I would expect you to ask me for this even if I did not provide the previous images. I told her that I was suffering from major depression and panic attacks, and that such events caused my depression to escalate.
She apologized again and said she had learned her lesson.
I wish she hadn't learned her lesson from me.
HACETTEPE HOSPITAL RADIOLOGY DEPARTMENT
We have the opportunity to choose the doctor when we have an MRI at Hacettepe Hospital or when we want the ones taken outside to be re-evaluated. Especially radiology professors are very good in their field. When one of these doctors evaluated the MRI, he stated that no mass or distant metastasis was detected in my liver, however, there was a millimetric lesion in the right adrenal gland and a close follow-up was recommended.
There are many diseases originating from the adrenal gland. Adrenal hyperplasia, adrenal Cushing syndrome and pheochromocytoma are examples.
The reason why I mention these is that while one doctor gave an examination result in the direction of metastasis, another doctor reached the correct conclusion with a detailed examination to indicate which disease the lesion in the adrenal gland indicated.
Since my oncologist is very careful and experienced, he examines the imaging results performed outside Hacettepe Hospital and often has them re-examined at Hacettepe when necessary. You can see the benefits of re-examination or re-interpretation of medical results.
MY 3RD SURGERY
As a result of the re-examination performed at Hacettepe Hospital, my oncologist referred me to a professor who was an endocrine surgeon at the same hospital. I had likely an adrenal gland-related disease that can be detected very rarely and can cause high blood pressure that does not decrease and sudden deaths due to reasons such as stroke and heart attack.
If I didn't have cancer and didn't have regular checkups, it might not have been detected, either. Especially considering my hospital phobia...
The endocrine surgeon listed the tests I needed to have first. Since the adrenal gland is an organ that has nothing to do with the kidney and is responsible for the production of many important hormones in the body, the tests were generally related to hormones.
When the tests were completed, my surgery was performed 1.5 years ago. My doctor performed my surgery in a private hospital, not Hacettepe Hospital. The doctor said that he would first start with laparoscopy and then convert it to open surgery depending on the situation. Ultimately, it was converted to open surgery. My brother, who lives in another city, came for my surgery. We used the hospital's companion service for a companion to stay with me.
Before the surgery, I talked to the head nurse and told her that I could not eat sugary things because I did not have a stomach, and I asked for my meals to be arranged accordingly. But since they didn't take this into consideration, dishes like sugary pudding were coming and I couldn't eat them. My doctor said I can't discharge you unless you eat something.
Of course I couldn't eat it. I had no appetite at all. I stayed in the hospital for three days, but the painkillers made me confused. Those days felt like a month to me. My close friends from my workplace came to support me both in the afternoon and in the evening.
A week later, my brother had to return because of his work. We were alone at home with my two cats. When I returned from the hospital, one of my cats, Monica, never left me alone day and night and always slept next to me. She usually sleeps in her bed on the floor of my bedroom.
(Monica)
After the surgery, a hematoma (blood collection) formed in my stitch area and my doctor said it would go away over time. About 10 days later, dark blood started leaking from one of the laparoscopy holes. I went to the doctor and he explained to me how to drain this blood. I did what he said twice a day for about 10 days until the discharge stopped.
What was more difficult was running between buildings to perform the procedures when the pathology report came out and my oncologist wanted it to be re-examined at Hacettepe Hospital. I had a balance problem, I was walking swaying and I was in no mood. Then, my thyroid check was started immediately and a biopsy was performed. As someone who just had surgery, it was very tiring.
Then my 3-4 month check-ups continued. At my last check-up, my oncologist requested so many tests that I was going to 3 different hospitals a day. And finally I went back to yearly check-up schedule.
