I have known a few people who are dealing with cancer for several years – they have been on treatment off and on for years. Amazingly, we have managed to keep disease under control. Some on cytotoxic chemotherapy, some on hormone blockade, some on immunotherapy, some on wait-and-watch and so on so forth.
The Coronovirus (Covid-19) has changed everything. We are worried about people who are immunosuppressed with steroids or chemotherapy. People who have had several lines of treatment and can still get some form of cytotoxic therapy are now being counselled about stopping chemotherapy. The benefit of 4th or 5th line of treatment is small, but the risk of immunosuppression is very high.
The risk of death higher.
Very difficult conversations. Most outpatient consultations now are either with the patient alone or with one relative/friend or via a teleconferencing platform. Really difficult conversations as hard as they are… and now with more restrictions – it is even harder. The heartache is felt by the patient, their families, friends, treating doctors and the nurses. The reception staff who have known these people for years are also struggling with the circumstances.
Terrible times. Most of us with overcome this. I feel sad for people who will not.
The Coronovirus (Covid-19) pandemic is bringing out the best and worst in us as a society.
One of the problems is that some of us are buying huge quantities of items from supermarkets and hoarding them (or still selling them on the black markets for huge mark-up prices).
I recently had a patient who was diagnosed with breast cancer – which had spread to her brain. This was managed with steroids and radiotherapy to the brain lesions.
She was then started on tablets which block the hormones driving the breast cancer. The plan was to start her on a CDK4/6 modulating tablet along with the hormone blocker. I had planned to start her on Abemaciclib – which is the few medications which cross into the blood-brain barrier. The biggest problem being that these tablets can cause severe diarrhoea for the first few weeks.
The dilemma then being that this poor patient did not have enough supply of toilet paper – as they could not source it from any of the supermarkets.
We contacted the local supermarket and the manager was so helpful. He kept aside one box of toilet rolls for the patient. Also helped rebuild my faith in society.
She was then started on Letrozole and Abemaciclib. She is doing well as of now.
This was the first time the lack of toilet paper actually affected my decision making for patient care!!
Think about people around you. Care.
The standard of care for patients with cancer is to discuss their case with peers and peers of associated specialities. Medical Oncology, Radiation Oncology, Surgery, Pathology, Radiology, Nuclear Medicine, etc are vital parts of the multi-disciplinary team.
We meet every week at one of the conference halls, to discuss patients and finalise management plans.
All this has been thrown into disarray due to the fear of Covid19 infection. All meetings have been shut down.
Hard to put down humans.
We are now changing over to video conferencing – all our meetings are now via Microsoft Teams or Zoom or Webex.
It has been an interesting challenge to convince people to use Teams and Zoom, but they are slowly coming around – and are now starting to enjoy it.
Most of us now have Teams on our phones, ipads and laptops – working from homes and offices (most offsite).
Life finds a way.
I have been working with people diagnosed with cancer over 2 decades now and I can safely say that the patient demographics have changed.
The patients I see in clinic or the ward have remained about the same, but they are getting younger. Even a few years ago, we would see a young woman in clinic and everyone would feel really sad for her. We now routinely see really young women in the clinic – there are a few patients now who are still in their 20s.
Something has changed. Something is making people get cancer earlier in life. Something is making people’s cell mutate and cause havoc with their lives.
Is it is the genetics? Is it the food we are eating? Is it our lifestyle? Is it the excessive radiation around us? Is our environment getting worse? Is the pollution driving the cancer?
I do not know the answer, but what I do know is that my patients are getting younger and younger. It is devastating to them, their families and their care-givers (including us as their medical care-givers).
We need to work harder to prevent cancer and if we do not succeed in preventing it, then treat it really well to cure them.
There is a nice article in the ABC site explaining in simple terms the effects of chemotherapy on the patient.
Cytotoxic chemotherapy has been the mainstay of systemic anti-cancer treatment for a few decades now. Things are slowly changing in a few cancer types. The future will be radically different, as we start to understand as to who exactly needs to treatment and with what.
Common questions you might have about chemo but were too scared to ask
We test for various genes in the setting of cancer or to assess the cancer risk for siblings or future generations.
The problem is that not all genes are the same. Also the mutation might be somatic (one off defect) or germline (familial). Harder to know the difference without checking for specific parameters.
The ABC has a nice article about this topic.
The American Society of Clinical Oncology (ASCO) has the annual scientific conference every year in Chicago. This year too the meeting was held and I attended a session called ASCO Voices.
This featured a variety of personal narratives and perspectives to expand views of oncology, medicine, and the world — from big ideas to personal passions. These lightning talks offer a break from the science and an opportunity to reflect on personal stories and experiences.
The session was held in the Arie Crown Theater at McCormick Place in Chicago. Each ASCO Voices presentation is 5 – 7 minutes. No podium and no slides; just a story and a stage. Brilliant talks. Worth listening to the sessions.
ASCO Voices Talk
Monica Morrow, MD, FASCO
Surgery Is Never Elegant When Women Are in the Operating Room
Yehoda M. Martei, MD, MSCE
Whose Breast is it Anyway? Breast Cancer and Sexuality in Sub-Saharan Africa
Ashley Sumrall, MD, FACP
Ishwaria Subbiah, MD MS
Scott Capozza, MS, PT
The Obligation of the Cured
People who are diagnosed with cancer have a relatively delicate immune balance. We are not truly sure about the factors involved in the immunological cascade.
People take lots of medicines, supplements and more to enhance their immune system. This has become a multi-billion dollar business. Unfortunately, most of these have low or no benefit.
One of the exciting and intriguing things which is emerging is the role of the gut in the immune system. What we eat and what our guts produce are becoming increasingly important from an immune perspective.
Probiotics are a bad idea for patients on immunotherapy. The logic being that immune systems are created on the normal gut flora – which is amazingly diverse. Taking probiotics spoils the equilibrium in the gut. Not a good idea.
Antibiotics have the similar problem. They kill the normal gut bugs and change the dynamics of the intestinal flora. Do not take antibiotics for things like viral infections or suspected infections.
It is so humbling to know that everytime we think we have found a new and wonderful door of understanding…. it just opens another maze to tackle.
Doctors and Nurses are generally good people. They are usually taken for granted by the hospital administrators and executive.
This article in the New York Times is excellent. Great piece.
Lung cancer is predominantly an illness seen in smokers or former smokers. There is an increasing number of patients with lung cancer, who have never smoked. Ever.
The huge stigma of lung cancer remains in this present day and age. People still say in hushed accusatory tones… “he was a smoker”, “she really should have stopped smoking”, etc.
The main issue being that we cannot change the past, but can fix the present and modify the future. Stop smoking. Believe in yourself. Focus on treatment. Get on with life.
Lung Cancer in Non-Smokers
Cancer care in Australia is just fantastic. Truly is.
The USA has cutting edge technology and a plethora of Phase 1 clinical trials and research work, but for the average person who needs treatment, Australia is still miles ahead. It is not just the issue of the medications available, surgery options, radiotherapy…. but the social and financial issues.
The South Australian Govt helps patients who drive more than 100 km per journey with financial assistance for their fuel and accomodation.
Most chemotherapy, biological and immunotherapy medications are available in Australia – via tax-payer Medicare subsidy or access programs.
The problem is that many people do not appreciate the medical care in Australia. The care from doctors, nurses, reception staff, pharmacists, cleaners, medical records and the rest of the team in the health care sector – is mostly really good. We tend to highlight the few bad stories (hopefully the incidents will be prevented in the future), but may not emphasise the good work which people do.
I have patients who are on treatment in Adelaide and decide to go on a holiday across the country. We arrange for treatment to happen across cancer centres in various parts in Australia. It happens somehow. Pretty amazing.
God bless Australia.
What is a bucket list?
Defined as “a list of things a person wants to achieve or experience, as before reaching a certain age or dying”
I see a fair number of patients in the clinic – public and private. Most people, rightly so, want to start treatment and get on with things as soon as possible. One of my jobs is to help people understand the various treatment options available and the rationale of each option. This includes talking about the risk versus benefit, the toxicity of treatment and the improvement in survival.
All this sounds great on paper or when lecturing to students or junior doctors. In the real world, things can get very difficult.
Some people want absolutely everything done to prolong life, even if it means that they are miserable for the entire time. Other people want nothing done with regard to our treatment, as they pursue alternative therapies. Yet others, can’t decide what they want.
As the years go past, many of us learn the value of talking to people and understanding what they want. What are their wishes, their fears, their aims, their goals? What does the family want? What are the plans for vacations? Holidays? Time spent with loved one? Major events planned – weddings, waiting for a grandchild to be born, graduation ceremonies. The list goes on.
I am slowly learning the importance of listening to people. It means a lot to them. And (now) me.
I ventured onto a website called Quora. Fascinating site. People ask questions about pretty much any topic in the world. There are people who try and answer the query. Over the past year or two, I started answering cancer related questions. It has been a fascinating journey. At times, it worries me about giving answers to people I have no idea about, their circumstances, their medical background, what their doctor has said to them, etc…. but over time I have learnt to be generic but specific.
It does not seem to be a second opinion, but a generic opinion. There are several doctors on the forum trying to help people from across the world.
The site is nice and simple. Most people can navigate it without too many problems.
My Quora link
Great article by Dr Victoria Lavin in The Guardian describing her struggle with breast cancer, while training in Oncology in the UK. She describes the people who truly made a difference during her treatment and the lessons she learnt. Amazing.
Guardian – Oncology doctor and cancer
Christmas time is amazing. People try to be nicer. Families get together. Time for a short break and reflection on life.
It gets harder for people who have been diagnosed with cancer and are on treatment. I try my best to give people a break over this time, time to get away from the hospital setting, time to be with family and friends, time to recover from side effects of treatment, time to relook at life.
There are several people who are admitted to hospital and unfortunately cannot be discharged home for a variety of reasons. The idea is to give them a break for a few hours to have Christmas lunch at home.
The saddest thing is when people are just diagnosed with cancer and need more investigations and reviews; and so many services or people are on leave. These patients and families are upset and frustrated. It does not really help them, when I explain that waiting for a few days will not make a huge difference in the bigger scheme of things. They want something done now. I can understand them.
What about people who know that this is their last Christmas on earth? It is important to tell people to enjoy their time with families and loved ones, not just for the patient, but also for the loved ones who will cherish the memories.
I continue to be amazed at the generosity of my patients – who will gift me and the team with cards, chocolates, gifts and so on. There are people who take the time to thank other members of the team (who are forgotten otherwise) – cleaners, support staff, pharmacy, reception staff, etc.
I love this time of the year. It brings a joy to most people. It also helps us understand that Jesus is the reason for the season.
One of the most intimidating experiences is to be confronted by an angry patient and their family/friends. They might be upset about the long waiting time or the services or whatever. Many times it is the sheer frustration of the convoluted medical system, which really upsets the patient and the family. In the process of getting angry, the primary intention of sorting out the medical problem gets buried (to some extent).
I have found it quite effective to let the angry patient rant about everything. When they run out of steam, try and work through the problem.
There have been a couple of patients, who refuse to listen and only yell. It is not worth breaking your head with them. Ask them to leave, or leave the room yourself.
I have the right to work in a safe environment.
I wonder what is worse – death or dying. I suspect most people are worried about the process of dying, with regard to pain or breathlessness; but there would be a fair number of people who are also worried about what would happen after they die. What would happen to them, their families, their friends, their assets, etc.
Difficult question. Personal. As always.
English and Medicine are not always the most complimentary areas.
Patients are told by their doctors that:
- The disease has progressed – patients are happy, progress is a good word – but doctors mean that the disease has increased
- The lymph nodes are positive – patients are happy, positive is a good word – but doctors mean that the cancer has spread
- HER2 gene is positive – patients are happy, positive is a good word – but doctors mean that the cancer is more aggressive
- KRAS is positive – patients are happy, but negative KRAS is better
- EGFR is mutant – patients are sad, but mutant is better