In the course of working on these criteria, we investigated the attitude of people to oncological
diseases and tried to help them to form objective opinions on this issue. The results obtained can help
in the prevention of cancer, as well
as prevention of carcinophobia.
In addition to our project, we have questioned ourselves: What is cancer for ordinary people? How does
knowing about this disease affect their everyday lives? Are people doing something to protect themselves
and others from it and should
they do it? How does this perception change if somebody was affected by this disease?
By investigating these questions we wanted to strengthen the paradigm:
“To cure, not to fear”
To help ordinary people to build the right perception of cancer and how they can protect themselves and
help others in fighting this disease. And also to tell people who are fighting against oncology right
now that they are not alone.
To summarize, we have tried to investigate cancer as a social phenomenon and affect the public perception
of it.
History
Let’s begin our research with the history of relations between humanity and cancer.
It appears that this disease was known for all of human history. The importance of curing this disease
was understood a long time ago as well. For example, one of the first references to cancer was made by
Ancient Egypt scientist Imhotep
who described the ways to cure breast cancer along with other diseases and who lately was proclaimed
“the god of medicine”. [1]
The terms ‘oncology’ and ‘cancer’ originated from Hippocrates' works. Ancient Greeks and Romans tried to
treat this disease by surgical removal of tumor and by using arsenic ointments. Internal tumors and
late-stage tumors were not cured,
as it was believed that the effects of therapies were more deadly for the patient than the disease
itself. Thus, even in ancient times people tried to fight against cancer. [1]
Although, people begin to think about the prevention of cancer much later. In 1727 Le Clerc suggested
cutting out swellings, polyps, and tumefactions before they become cancerous [2]. British surgeon
Percivall Pott reported about the correlation
between the profession of chimney sweep and cancer of the scrotum in 1755. [3] The physician John Hill
connected tobacco snuff and nose cancer in 1761. [4]
Pott's warnings and his list of instructions to avoid cancer were not taken into account for many years
in England, where sweeps continued to suffer from scrotal cancer, but were implemented in Holland, where
scrotal cancer decreased in
sweeps.
As we can see, the knowledge of this disease and even of some ways to prevent it were obtained a long
time ago. But the Pott’s example shows us that there must be an effective communication between
researchers and society to effectively
prevent cancer.
The Social Problem
Many contradicting and mistaken beliefs about cancer existed in different societies . Even nowaday people
believe that cancer is always a difficult and almost always a fatal incurable disease. More than half of
people in the UK think that
person will die if they were diagnosed cancer. [5] To somehow eliminate the fear of this diagnosis some
specialists suggest using “C-word” instead of “Cancer”. [5]. The most vivid illustration of the horror
of this disease is the translation
of one of the local names of cancer in Nigeria - “the disease that cannot be cured”.
This way of thinking becomes especially dangerous when we speak about suicides among cancer patients.
[6]. One of the reasons people diagnosed cancer make their final decision is Desire for Hastened Death.
In some cases, this death could
have been avoided if the cancer had not been perceived as that deadly and painful disease. But luckily
this dark statistic decreases as we develop new drugs and improve patient care. [7] Also, we should not
forget about such psychical
disorder as cancerophobia - a common phobia and an anxiety disorder characterized by the chronic fear of
developing cancer..
Another cancer-related problem is the lack of awareness about it. People tend to underestimate the
importance of cancer prevention and screening for it. As a result, we have more cancer patients and more
of them ask for medical help in
the late stages of cancer. The problem is still very relevant and some campaigns were established to
eliminate it. [8]
It appears that the general situation is that people often overestimate the consequences of cancer and at
the same time underestimate the importance of preventing it or at least they don’t know how to do
it.
Testing
We conducted the survey with all respect to the privacy policy of our country to assess the level of
cancer concern among the contemporaries. Also, we asked other iGEM teams for help and one of them - the AFCM-Egypt team has
helped us. This team helped us with the translation of our survey to Arabic and the distribution of it
among 116 students of Cairo University. We want to thank this team for their beneficial support.
In Russia, we managed to obtain 268 completed forms. We think that based on the data obtained we can draw
some conclusions at least about Russian students and compare them with Egyptian students.
The first striking result obtained after data processing correlates with smoking habit.
In Russia, the Ministry of Health adheres to a very strict anti-smoking policy, including educational
propaganda, which was noted even by WHO [9].
Here are the answers to the question 'Do you think smoking can increase the risk of
cancer?’
In Russia, less than 1% of all respondents answered that they don’t think that smoking increases the risk
of cancer. In Egypt, this number is much higher - 34%.
This example shows that a government can and should affect the awareness of cancer risk factors.
Other cancer risk factors, such as improper nutrition and alcohol abuse along with environmental risk
factors were also examined. The results show that a significant part of one of the most educated parts
of our society - students don’t
know basic cancer risk factors.
Here are the percentages of right answers for each risk factor.
As we can see, alcohol abuse is the most ignorant factor. We think that if we collect a more diverse and
larger sample the results will be even worse.
The number of people who checkups for cancer annually or more often is quite low in our survey. But this
result is expectable because we cut our sample by age. If we analyse the subsample of people above 30 we
will get these results: only
45% of people check-up for cancer at least once every 5 years.The percentage of
people who do it annually is even smaller - 15.6 %. Although the sample size is comparatively small,
only 51 people, the results are alarming. Early
diagnosis is the key to recovery from cancer and it is important to annually check for this disease
after 40.
The results of the survey confirmed the hypothesis that people still perceive cancer as almost always a
fatal disease. Here are the answers to the question: ‘Are you afraid of having
cancer?’
As we can see from this data, the number of people who still negatively assess their chances of recovery
is more than 50 %. Similar figures are obtained from Egyptian data.
Our data shows that 40% of all respondents think that cancer patients can’t have a normal
lifestyle during treatment. At the same time, 28.4 % of them think about this disease more often
than once a week.
Participants were asked to assess their fear of cancer and knowledge in oncology and here are the
results. As we can see – people, who are more educated in this area, tend to give less extreme
answers.
It is especially notable when we talk about 5 / 5 fear rate.
The conclusion that can be drawn from this data is that we should pay more attention to
increasing cancer awareness in society. Cancer is still perceived as an almost deadly disease but
the knowledge distribution of risk
factors is incomplete.
Interviews
We conducted several interviews to compare the survey results with real situations and to reinforce our
vision with the opinion of people touched by this disease.
Interview with a doctor
First, we asked Tatiana Dumpis, the medical oncologist with 8 years of experience, important questions
about prevention and treatment of cancer. Here the answers on them:
Can cancer patients have a normal life?
Of course, they can. Especially in the early stages of cancer. It depends on
the toxicity of treatment the patient receives and the stage of the disease. For example, cytostatic
agents –a classical drug, impair the growth and division
of cells. As a result, a patient may lose hair, anemia symptoms may develop, blood cells count may be
temporarily decreased, mucosae may be affected, but all of the processes are reversible and controlled,
also special treatment is
used to prevent these toxic effects. Moreover, nowadays the segment of targeted drugs grows. These
medications increase efficacy of treatment, prolong survival and also allow physicians to avoid some
negative effects because of a better
safety profile. What to add is that even patients with advanced tumors try to live fully, controlling
the symptoms.
How often should we go through preventive examinations for cancer?
The answer to this question will be universal to every person in the world, but there are several
recommendations for certain groups of people. The first cause can be heredity. You have to pay
attention to the disease history in your
family. Also if you are over 40 you should think of regular screening, because cancer can happen to
anyone.
Screening of cancer in the population is quite relevant, but it should be doctor-planned.
For instance, it would not be reasonable for everyone to do chest tomography, but that seems logical
for smokers to do it once a year.
It is also important to mention that tests based on tumor markers are not the best thing to do. They
should only be done as directed by the therapist.
What symptoms should you pay attention to?
For the younger generation a striking symptom of cancer is moles changing
(change of form, size, baldness if it was previously hairy, ulcer). All ages should be alert if they
have: a sharp change in taste habits, fast weight loss, bumps
over the body, increase of the lymph nodes, hemorrhage, unexplained fatigue. It doesn’t mean that if you
have several of these symptoms you have cancer, but having some of the mentioned symptoms should be
perceived as a need to check
for cancer.
Which factors affect the development of cancer?
Of course, it is smoking, alcoholism. The bad ecological situation also
affects cancer development. Obesity can be mentioned as one of the causes. More exotic: some strains of
human papillomavirus infection (HPV) are oncogenic and can
cause cervical cancer, this is why vaccination against HPV is highly recommended.
How has the situation with cancer treatment changed over the past few years?
In large cities of developing countries such as Russia, the level and availability of treatment
increased significantly. In small towns, there is still a huge problem with late appeals to doctors,
which makes the process of treatment
much more difficult.
Targeted therapy is a breakthrough in the whole world, including Russia. For instance, a few years
ago patients with advanced kidney cancer lived approximately ten months, nowadays they can live up
to five years and even more, receiving
targeted treatment.
In fact, even advanced cancer is becoming a chronic disease, which can be controlled with proper
treatment.
Interview with a patient
Second, we interviewed the girl who successfully overcame cancer, Elena. Because the second
interview is more emotional than the previous one we decided to present it almost unedited.
Hi! As part of this project, we study the attitude of people to oncological
diseases. We conduct a survey and interview people who have encountered the disease. Thank you for
agreeing to talk to us today. Could you tell us your story?
You had cancer. Tell me more about your diagnosis?
Hi! First of all, what you are doing is a very important matter.
After all, everyone can face this disease. Yes, I had cancer, stage II Hodgkin lymphoma.
This disease is characteristic of adolescents.
How were you diagnosed and under what circumstances? Have you had any complaints?
What prompted you to go to the doctor?
I found out about my diagnosis when I was 15 years old, at the beginning of
the 10th grade, I had a very enlarged lymph node in my neck, but it did not bother me and I decided that
it would pass by itself. My mom didn't like this approach
and she made me go to the clinic. Doctors could not make a diagnosis for about 1.5 months. Antibiotics
were prescribed to relieve inflammation, and during the ultrasound examination, they assured me that
everything was within normal
limits. I was happy and didn't suspect anything. Later, during the state medical examination for school
students, I visited an endocrinologist who had a patient with similar symptoms a year ago. I was
immediately sent for examination
and a biopsy was taken. After the lymphoma was confirmed, I stayed in the cancer center for almost six
months.
What was a prognosis? What was your emotional state when you found out about the
disease?
Doctors gave quite a good prognosis, about 98% of patients recover
successfully.
They didn't give me specific numbers, but they assured me that everything would be fine,
and I was calm and of course I was not thinking that I will die soon.
You said your treatment lasted 6 months, how did you bear it?
Yes, as I said, after taking a biopsy and confirming the diagnosis, I stayed
at the cancer centre for almost half a year to start treatment. I had 4 courses of chemotherapy, as well
as a course of radiation therapy. The lymph node was localized
in the cervical-clavicular region, during focusing and its irradiation, nearby tissues can be also
damaged, in my case, the esophagus was burned. Therefore, if I wanted to eat, then before that I had to
drink olive. It was somewhat unpleasant
to live. The chemotherapy was even more unpleasant because my intestines stopped working as a side
effect of the drugs. After that, the course of chemotherapy had to be repeated, but the same side
effects occurred. Fortunately, then the
doctors were able to find me a drug that did not cause me such serious problems.
What was the lifestyle in the hospital? Get up early in the morning, take a blood
test, and then the treatment begins?
Every morning they do a blood test before breakfast to make sure you don't
have an aplastic anemia. I had 4 courses of chemotherapy. The first course looked like this: on the
first day 4 drugs are administered, the next day another one, then
a break of two weeks and another day when 4 drugs are given.
Did you need a transplant?
No, thank God. This is done only in the last stages or with relapse.
I would also have to wait for it for six months.
How emotionally did you survive the treatment? Did you stay in touch with your
family, did they support you?
Since I was under the age of 18, I had to stay with my mother during the
entire period of treatment. I've never been in such close contact with her in my life! Relatives could
also come to visit me, and sometimes I myself went to my grandparents'
house. I talked a lot with the parents of other kids who were in the hospital. In general, everything
was fine, the atmosphere was positive, everyone was joking a lot. This is just a period of your life
that you need to go through, no
one lives there with mourning faces and does not wait for death.
The only thing that upset me was that I missed the 10th grade of school. In general, everything was
fine.
How did the discharge from the hospital happen? When did everyone realize that you
were healthy? What did you feel? How did everyone around react to this?
You know, little kids just get better and leave the clinic, and grown-up
kids cry and get nostalgic. I was no exception, I was sad to leave there.
Did you think "I'm going to miss the ward"?
Honestly, yes. During six months there, I have developed good relations with
people in the hospital, especially with doctors. You live in it, and then you suddenly get back into
normal life. Although you can't call it normal, because at first,
you can't even contact people, because you lack immunity. In general, I cried, we gave everyone
small presents and left. That is how it happened.
As I understand, you still occasionally visit this hospital. Do you need to pass
any preventive checks?
I’m fine. I'm in remission. I have already moved to the adult department,
they told me that everything is fine and they don't need me to see me that often anymore.
If something goes wrong, then we'll see.
How long did it take you to get back to normal?
I had a very severe allergy after chemotherapy. I tried to be treated for it
for a very long time and somewhere by the end of winter, six months after discharge, I finished. From
the already mundane: for the first 3 months it was necessary
to wear a mask everywhere so as not to get sick while having weakened immunity.
How do you feel about all this now after recovery?
I’ll say a strange thing. As an event in my life, first of all, this gave me a
break. Secondly, it was the opportunity for me to prepare for exams and later to enrol in MIPT. I see
few disadvantages in this. Bottom line, everything is fine
with me and this period gave me some benefits. Even during the treatment, I perceived everything
positively.
Thank you for this interview. I hope it will also help to change the attitude of
some people to oncological diseases. After all, recovery largely depends on the mood of the patient! I
wish you never to face such diseases again and to keep
the same positive attitude in life!
Thank you, it was interesting to talk! I am always happy to share this
experience
and hope that it will help someone. Good luck, and take care of yourself.
Interview with the scientist
The third interview we took was from a biologist, a specialist in the field of molecular biology and
genetics, immunology and biotechnology. Doctor of Biological Sciences, Grigory Efimov told us about the
field of cancer research and about
his personal way and motivation.
As I know, you are the head of the Laboratory of Transplantation Immunology in the
Russian National Medical Research Center of Hematology, and can you give us more information about your
current position, please?
Sure, I am currently a head of the Department of Biomedical Technology in our
Center.
Can you describe your scientific career and show us how you came to your current
scientific interests?
Well, I have a degree in medicine, but I have never practised it. During my
last
years at University, I attended several lectures of leading scientists, invited by Sergey Nedospasov* to
Russia. Thus, I chose a scientific career and after my
graduation, I worked in Nedospasov’s laboratory, and he was my first scientific advisor. At that time I
was doing fundamental research in immunology, which had a practical application regarding autoimmune
diseases, namely, rheumatoid arthritis.
We developed the next generation of therapeutic monoclonal antibodies that inhibit anti-inflammatory
cytokines that are more effective than previous ones and have fewer side effects. After receiving my
PhD
I was invited to the National
Research Center for Hematology in Moscow to establish an immunological laboratory, which would study
the
patients of our Center - these are patients with malignant diseases of the hematopoietic system.
Many of
them undergo blood stem cell
transplantation, which essentially means transferring the immune system of one organism to another
organism. This is accompanied by extremely interesting immunological events. Another priority for us
is
the development of cell therapy
for malignant diseases of the hematopoietic system.
Why did you choose malignant diseases for your immunological research?
Actually, the choice was conditioned by the fact that it is very important to
build your career taking into account existing opportunities and strengths. Here in our Center, the
strong point is that such rare patients with complex diagnoses
and difficult treatment are gathered from all over Russia.
Thank you, could you tell us about the current situation in the application of CAR
T therapy* in Russia?
In Russia, only children can receive this therapy so far as part of clinical
trials at the Rogachev Children's Hematology Center. There, our colleagues use the same platform that we
plan to use, but the viral genetic vector used to produce
a product is supplied to them by a foreign contractor. However, we want to do everything by ourselves,
including the vector, which is the most difficult part.
How do you estimate the time how soon all patients will be able to receive this
therapy relatively affordably?
Considering adults, we expect that in the 2-year range we will start clinical
trials. At the first stage, it will most likely be a hybrid technology - our genetic construct, which
will be produced by outsourcing company, but in 5 years we
plan to do a full cycle on the basis of our Center.
As a person who did not come entirely from oncology, how do you assess its
development speed?
Therapy of malignances is a really huge area, but if we talk about immunotherapy,
it began to develop in the 80s of the last century. At first, the idea of using the ability of our immune
system to recognize and eliminate antigens in a highly specific manner, including tumour antigens, seemed
like a dream. There were many approaches that, in theory, were supposed to work, but in practice, they
turned out to be not very functional and economically feasible. However, in the last 15-20 years, a
breakthrough has been taking place in this area. First, technologies for producing monoclonal antibodies and
their usage in cancer therapy were developed. Monoclonal antibodies can selectively bind virtually any
antigen. It can be used, for example, to block the growth signal for a tumour.
Another example is antibodies
for delivering chemotherapy drugs directly to the tumour. Another type of monoclonal antibody can
cross-link
T lymphocytes and tumour cells. All of this has already been successfully used in cancer therapy. And
the
biggest success in cancer immunotherapy has come from the so-called immune checkpoint blockers.
Of course,
cell therapy falls behind antibodies a little, but CAR-T therapy is a good example of success. It is a
chimeric antigen receptor that, although more complex than the transgenic T cell receptor, is actually
more
efficient. The revolution in this direction for the treatment of lymphoma/leukaemia occurred due to a
very
successful combination of finding the right combination of signalling co-stimulatory molecules and the
target (CD19). Now 5 drugs have already been approved and others will obviously appear soon. As for
other
solid tumours, such success has not yet been achieved. However, there are some ideas and I think that
most
likely in the near future we will be able to treat solid tumours as effectively as leukaemia.
Why are there any difficulties with the treatment of solid tumours?
Solid tumours have mechanisms of resistance to immunotherapy - they create a
tumour microenvironment that suppresses the function of cells of the immune system. In particular, CAR-T
cells lose their effectiveness when they enter the microenvironment.
However, some ideas on how to overcome this are already being tested.
Let's hope for success. Now, tens of thousands of scientists are doing a great job
in all areas of cancer therapy. It turns out that already in comparison with the 80s, there has been
tremendous progress.
Of course, the progress happened and it will be. Technologies are advancing
rapidly and breakthroughs are taking place right now. For example, the CRISPR-Cas system is already
undergoing clinical trials in the cell therapy of cancer, and it
may become a more effective and cost-effective way of treatment.
As far as I know, checkpoint therapy began to be applied a couple of years ago and
clinical trials are so successful that there is no sense to talk about mortality and life expectancy
yet. Because people are healed! Is this really so?
Yes, the success is really amazing. However, this therapy does not work for
all tumours types. The mechanism of its work is to destroy the inhibitory effect of the tumour on
T-lymphocytes. So the most malignant and difficult to treat tumours
with a huge number of mutations are extremely susceptible to this therapy because they contain multiple
antigens, which means that there are many T cells to recognize them. And there is another class of
tumours, such as leukaemia, which
contain only single mutations, so they are not likely to be recognized by T cells, which is why
checkpoint therapy is ineffective.
Thank you very much for such an informative and interesting interview!
*Chimeric antigen receptor T cells (also known as
CAR T cells)
are T cells that have been genetically engineered to produce an artificial T cell receptor for use in
immunotherapy.
CAR gives T cells the ability to target a specific
protein on the surface of target
cells.
From these interviews, we learned what you should and what you shouldn’t do for cancer prevention, what
the lives of cancer patients and cancer therapies look like, and how positive thinking can help you get
through dark times. Also, we learned
about the way of scientists in oncology and how science helps to fight this disease.
How can I help?
You can also take part in this fight. There are a lot of Russian and worldwide organizations which raise
charity and donations for cancer patients. You can find the list of these organisations below:
Russian:
-
Foundation for the fight against leukemia
Providing support for adult patients over 18 years of age with oncological diseases of the
blood system, fundraising for treatment, volunteering.
https://leikozu.net
-
Konstantin Khabensky Foundation
Helping children with cancer and other serious diseases of the brain and spinal cord.
Collection of donations to pay for diagnostics, treatment, rehabilitation, and psychological
support for patients.
https://bfkh.ru
-
Podari Zhizn
Raising funds for the treatment and rehabilitation of children with oncological and
hematological diseases, helping clinics, providing social and psychological support to sick
children and their families.
https://podari-zhizn.ru/ru
Podari Zhizn has two sister charities: Gift of Life in the UK and Podari.Life in the US.
USA: https://www.podari.life/
UK: https://www.giftoflife.eu/
-
National hematology research center
Finding bone marrow donors.
http://blood.ru/transfuziologiya-i-donorstvo-krovi/donoru/stat-donorom-kostnogo-mozga.html
-
House with the beacon
The Foundation helps terminally ill children and young adults under 30 by providing
palliative care. Provide support for children's hospices in Moscow.
https://mayak.help/fund/
-
Rusfond
Helping seriously ill children, promoting the development of civil society, implementing high
medical technologies.
https://rusfond.ru
International:
-
American cancer society
Voluntary health organization dedicated to eliminating cancer.
https://www.cancer.org/involved/donate.html
-
International Agency for Research of Cancer
international research organization, part of the World Health Organization, promoting
international cooperation in the field of scientific research in oncology.
https://www.iarc.fr
-
Memorial Sloan Kettering Center
Cancer treatment and research institution, collection of donations
https://www.mskcc.org
The number of donations is increasing. One of the examples - bone marrow donors statistic in
Russia:
You can join them or just donate your money. Acting this way we might save more lives.
Conclusion
We tried to investigate and began to affect the public perception of cancer. Now we can conclude
what:
- Cancer has been known by humanity for thousands of years and in ancient times people tried to
treat it. Even ancient scientists did not perceive this disease as a disease that can not be
cured.
- The ways to prevent cancer were discovered many years ago and the historical examples prove that
this is important for governments to take them into account.
- Many people still perceive cancer as an almost incurable disease and many of them think that
cancer patients can’t have a normal life during treatment.
- At the same time, a large number of people still do not know the basic risk factors of cancer.
The check-ups for cancer are conducted annually by a few people, which makes it very hard to
diagnose cancer at an early stage.
- Government actions can significantly affect people's awareness of cancer prevention.
- The check-ups for cancer are very important for people in a high-risk group and for the older
generation. Without them, early detection of cancer will be difficult.
- Cancer patients can have a normal lifestyle and can live happily.
- Thanks to modern treatment even complicated cases of cancer can be cured or become a controlled
chronic disease.
- In developing countries, cancer diagnosis and treatment is still a big problem in small towns
and the countrysides.
- It is important to raise awareness of cancer, and our team began to do it.
- Even in their disease cancer patients can find cons. And positive thinking can overcome these
obstacles.
- There are thousands of scientific organisations which develop new methods ofcancer treatment and
many talented people from all over the world are working on solving the rising problem of
cancer.
- Along with many volunteers, donors and benefactors you can take part in this fight through many
charity organisations. The amount of these people is increasing year by year.
- Cancer should be cured, not feared.
References
- Donna M. Bozzone. Chapter 2. The History of Cancer and Leukemia // The Biology of Cancer:
Leukemia. — New York: Chelsea House Publishers, 2009. — P. 23—35. — ISBN 0-7910-8822-7.
- Le Clerc CG. The compleat surgeon. London: Walthos, Wilkin, Bonwicke and Ward; 1727.
- Hajdu SI. A note from history: landmarks in history of cancer, part 3. Cancer. 2012 Feb
15;118(4):1155-68. doi: 10.1002/cncr.26320. Epub 2011 Jul 12. PMID: 21751192.
- Hajdu, S.I. (2011), A note from history: Landmarks in history of cancer, part 2. Cancer, 117:
2811-2820. https://doi.org/10.1002/cncr.25825.
- Suicide in Patients With Cancer: Identifying the Risk Factors, June 19, 2019, Daniel C.
McFarland, DO, Leah Walsh, MS, Stephanie Napolitano, MA, Jody Morita, MD, Reena Jaiswal, MD,
Oncology, Oncology Vol 33 No 6, Volume 33, Issue 6.
- “Rate of Suicides Related to Cancer Is Declining”, February 17, 2021, by NCI Staff.
- https://www.cdc.gov/cancer/dcpc/about/campaigns.htm
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https://iz.ru/1228840/2021-09-30/evropeiskii-ofis-voz-nazval-rf-primerom-v-borbe-s-kureniem-i-alkogolem
