This ‘Titanic travel journal’ is dedicated to women and men who have been diagnosed with advanced breast cancer.
The ticket
My Irish great grandmother married a British land surveyor. They had tickets booked for the maiden voyage of the Titanic. She had a dream that the ship would sink (“the ship that God couldn’t sink”), so she insisted that they get off. I can imagine her husband’s wrath but eventually he did submit to her call. The rest is written and produced in movies. The replacement ticket that my great grandparents received is another story. With that said, we all get a ticket for our own Titanic. The length of voyage is partly determined in the stars but what we do on the expedition is largely up to us, and how we deal with the icebergs along the way is for each person to decide.
Boarding
What do you do when you receive your ticket for the maiden voyage of breast cancer or receive a surprise ticket for a repeat breast cancer voyage? Well, you’re on the ship, whether you like it or not, and your oncologist has probably been “oncologisty” (clinical and terrifying), and has told you that you’ll die of the breast cancer.
I am always nervous to disagree with specialists who are extremely smart, and as a group are spectacularly good at crunching numbers (meaning they usually get it right). However, they don’t always, not due to miscalculation but due to other factors: weather, lifeboats and parties (fancy new oncology drugs or different combinations of old drugs), resulting in the unpredictable – more people dying from other diseases while people with breast cancer live longer.
The voyage
Imagine the captain setting off the alarm, announcing “iceberg ahead”, then screaming “we have been hit”, and then all the different ways people reacted. Some with panic, some with acceptance, some with an I-will-get-off-this-boat-at-all costs-attitude, others with a women-and-children-first-attitude or a F*&#$ the-women-and-children-attitude. Surely, there were a few with the mind set of I-can-pay-I-am-first class, while many passengers were in the wrong or right place at the right or wrong time. None the less, getting off the boat onto a lifeboat or into the sea, replaced one set of circumstances with another.
Which class are you in?
What is class? Would that be the ass that conforms last? Maybe class is not about station, but about behaviour. My philosophical take is that the class you’re in is determined by the joy you have in your surroundings, and how you behave and use your surroundings to educate yourself, and learn from your own mistakes (my saving grace is in having no ego when treating patients, and learning every step of the way as to the value of the team).
The problem with class on the breast cancer voyage is that cancer drugs may not be available on the lower class decks, and access to certain lifeboats, such as target therapies, may not be available either, but for the most part, the accommodation is the same, minus a few frills here and there.
In my opinion, the treatment and quality of the stay (drugs) at government units is on par with private. The bed may not be king-size, the duvet may not be duck down with regards to comfort in terms of waiting times, and often the minibar (added medicines to help with the side effects) may not be available. Yet the treatment can be almost identical. You just need to understand what is at the nearest local 7-eleven and ask to see what is available. Managing treatment doesn’t always require expensive medication; crushed ice, homemade ginger tea and ginger biscuits can help with side effects. At the end of the day, when it comes to cancer treatment, any bed will do, so don’t be scared of what you consider a student hostel, it will still give you a good night’s sleep, if you allow it to.
Food
Let’s talk cancer drugs – the meal. The concept of a staple diet must apply when it comes to cancer meds. There are certain meal necessities that we need to survive, and these can be found at government units as well.
• Cancer in the bone: The staple diet here is often bisphosphonates (bone cement), a variety of types are available. There is good data showing that bisphosphonates are like ‘poison’ to the soil and stop cancers growing. In fact, some studies suggest taking these drugs when initially diagnosed with breast cancer, decreases the chance of the cancer going to the bones.
• Endocrine therapy*: When a cancer comes back elsewhere, usually in the bones, or other organs, in someone who is on endocrine therapy, it is failed contraception of endocrine therapy. There is usually a reason, and what is usually recommended by the multi-disciplinary (MDM) team is a biopsy of the area where the cancer has come back, to confirm if it is still hormone sensitive; your oncologist may recommend changing to another form of therapy. (Note, if the cancer is not positive for the oestrogen or progesterone receptor, endocrine therapies don’t work). In terms of cancer drugs, as mentioned, understanding what the cancer is sensitive to is vital.
Three scenarios of advanced cancer presentation:
1.Presenting with an advanced cancer at first means that you’re a cancer medicine virgin. This means that there are a variety of cancer drugs available for use. Before starting treatment, a discussion in a MDM with many doctors giving opinion is critical. Not all cancers require hectic chemotherapy – different types of cancer behaviour will result in different types of treatment courses; with some lazy cancers possibly being managed with hormone-related cancer drugs.
By starting a select group of patients on chemotherapy (the main course), it gives us an opportunity to kill the cancer first. This is a form of biological warfare, and one of the reasons I get cross when patients have surgical biopsies to diagnose breast cancer is, this often removes part of the cancer without the treating team having an option to discuss best ways to manage the cancer. Another reason for not having emergency mastectomies is that no one ever died of cancer in the breast but rather of cancer elsewhere. And, if cancer was an emergency, one should start treatment with an oncologist, not a surgeon. Once the nature, size and behaviour of the cancer is determined, the need for radiation, at a later stage, is determined (whether by clinical, radiological or sentinel means), and the performance status of the patient (how fit you are). The decision may be made to kill the cancer with chemo first; this is the gold standard for all locally advanced breast cancers.
Some cancers present at advanced stages, either locally or elsewhere, because they have certain behaviour characteristics:
• They may have certain oncogenes (cancer genes) that act as accelerants, encouraging cancer growth (Her2/neu) and giving small tumours the ability to spread.
• Their biology may show them to have fast takkies (high Ki), or may be triple-negative (not hormone sensitive), and grow fast, and therefore are better treated with upfront primary chemo.
2. After taking five years of anticancer hormone treatment then stopping, and the cancer comes back. These are usually hormone-driven cancers and what we know now is that being on cancer hormone treatment for long periods of time (over five years) prevents cancer coming back. Today a minimum of 10 years of anticancer endocrine therapy is suggested. Chat with your oncology team before stopping your therapy, and know that changing to other forms of endocrine therapy may be suggested. Treating these reoccurring cancers after so long (again after discussion in the MDM), depend on where they
come back (lung and liver usually means some form of chemo) or bone (means anticancer hormone drugs or chemo).
3. You’re taking your cancer treatment, usually tamoxifen (know that any generic will do), or maybe an aromatase inhibitor (AI), and your cancer comes back while on the treatment. This is like taking a contraceptive and still falling pregnant. The reasons can be many fold: an antidepressant (Prozac and others CyP-D 2 inhibitors) has the ability to make tamoxifen not work; targets that your cancer may have had or developed were not known at the time of starting treatment (a bit like how bugs develop resistance to antibiotics). My heart goes out to the men and women who ran the marathon, took all the medicne and left their families holding the medal.
4.Not compliant to treatment
There are many women who have refused to take tamoxifen or other meds on the grounds of the side effects. I have no problem with choices people make. It is when those choices are uninformed or based on dodgy literature, that gets me going. All medicines have side effects but not everyone will get them. Sadly, the side effect of cancer is that it is a parasite, and like any parasite it is hard to get rid of. So, by not taking cancer medicine is like playing Russian roulette – it may work out okay, but usually it doesn’t.
Entertainment
Well for most of us life is not fun, I think we should all look at the ladybug on the leaf or at the irritating queue at government clinics and decide how we’re entertained by the stressors of our surroundings. There is entertainment in the mundane, on the chemo couch, in “vomit comet” and in all aspects of life.
If you’re on the ship, enjoy the ride
Don’t hide the cancer under your shirt, it will grow. Seek advice at a specialist centre. Discuss all options, embrace the treatment. Women can live for many years with secondary breast cancer (cancer that has spread). Your MDM team must find out the nature of the cancer; analyse previous treatment, and come up with a treatment plan individualised for you. It is about how you dress everyday (not your clothes but your outlook) and how you dance, even if you have no rhythm still enjoy it. How are you dancing? Exercise decreases the chance of cancer coming back. And, who are you dancing with? Family, friends and party starters, not party poopers! What music are you dancing too? Whatever beat gets your body moving, please ensure that your medical team is not just a DJ, but rather a full orchestral band, with a great conductor.
Dance that last dance
Some of the passengers on the Titanic knew it was the last dance, some did not. I have most admiration for those that knew: the captain and those that put on their glad rags, and as the band played they danced knowing the would likely go down with the ship. However, some didn’t go down with the ship – a freak event or a lifeboat saved them just as a new drug or an old drug in a new scenario saves breast cancer patients, despite what was predicted.
*Read the article The story of the ugly duckling in the July/August issue.
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