Prof Carol-Ann Benn explores what breast cancer may look like through the looking glass.
In the March/April issue, I looked at Alice in that blue and white dress before the cancer diagnosis (feisty but innocent looking) and that fateful fall down the rabbit hole. Her success is measured by whether or not she can beat the Jabberwocky (cancer).
The journey was accompanied with the meeting of friends. From the Mad Hatter (surgeon) and Tweedle Dee and Dum(b) (gossip brigade) to the wise Caterpillar, etc. Now, fast-forward to post-treatment and life thereafter.
I don’t think it is strange that Alice captained a ship. I love that she mastered her own journey right from the helm. Post-cancer diagnosis is rather like that ship at sea. It is lonely. But embracing the ‘new you’ may lead to viewing the journey of life in a different way to how you did pre-diagnosis.
You are not on your ship alone; ensure you stop at a port. Contact with your healthcare providers is essential; though should not be stressful. This is why there is an important skill and somewhat speciality called survivorship.
Your passport prior to travelling starts with you understanding what is safe and not safe. Let’s start with the different travel visas.
When should you go for mammograms and ultrasounds?
The rule is six months after you finish radiation, or six months after surgery if you didn’t have radiation. Not everyone requires mammograms. If you have had a mastectomy with or without reconstruction, you require an ultrasound (take your pre-diagnosis films with you). Go to a specialist breast radiology unit that has multi-disciplinary review.
What bloods should be pulled? How about a cancer count?
The cancer count is a CA 15-3, and everyone wants to know yours. This blood test is not a screening test! So, don’t get it pulled to find out if you have breast cancer. Numerous newly diagnosed women arrive in my rooms with a CA 15-3 having been pulled, and most of the time it is normal. This blood test is not part of the recommended screening, or cancer diagnosis international guidelines.
An oncologist uses this blood test to determine response to treatment in patients who have breast cancer that has metastasized (spread elsewhere).
Other useful bloods that will be pulled, at the discretion of your oncology team, are a liver function test and a full blood count. All of us should check: thyroid function, cholesterol and sugar levels (fasting glucose and insulin), and vitamin D levels. This is because there is good data on the negative impact obesity has on your body. Including, increasing the chance of cancer recurrence.
Chronic cancer medication
Every cancer patient is on different cancer medication while some may be on none. There are many generics of cancer medications. Each person on any medicine will have different side effects, or none at all.
The internet is not the place to determine side effects. Before deciding that the medicine (for example, tamoxifen) has too many side effects, pick up another medication you are on, or simply google side effects of headache tablets. Only google this and nothing else.
Which doctors to see when?
On your cancer journey, you may have met many doctors. With that said, you do not need to see all of them at the same time. So, if you’ve seen one of your specialists and you feel comfortable that he/she is thorough (listened to you; examined you and sent you for tests if you have symptoms), you need not to see another specialist.
If it’s more convenient to see a particular specialist (due to time or waiting (blush here)) then see that one; or see the survivorship specialist.
Your anchor should always be friendly availability of staff and, especially, the navigators in the unit.
You canít change the past
For me, the essence of Through the Looking Glass is the two themes of time, and the fact you can’t change the past.
Alice tries to go back in time to see if she can change the past. But the The Evil Queen is still evil and Alice can’t save the Hatters family in the way she believed she could. Yet, they did not die.
The poor Queen of Hearts, such a pretty young girl, and it was not her fault, she did not steal the tarts. Remember, that most women with breast cancer have no identifiable risk factors and have done nothing wrong. The diagnosis is a result of a series of random genetic events.
Anger, depression, self-hate as well as dislike for your new physical body (although understandable) is negative. If you’re battling with these emotions, please get help.
Good report list
Recognising is the first step in the battle. Friends, family, exercise, anti-depressants (please check which ones you can take), natural and medicinal means can manage most side effects of treatment complaints.
Side effects post-chemo take a while to improve, and are different depending what chemotherapies cancer patients are treated with.
List your post-chemo complaints. Assess what they were like before.Then, we set up goals to make them better. This is called a Good Report List.
Remember, the me of 16 could high jump; the me of 50 can’t touch my toes. This is about age and laziness (I don’t practise). I can definitely improve with practise. (By next year Jan, I will share a pic of me touching my toes).
In the movie Through the Looking Glass, time was a character. He walks up to hanging watches and closes one. This depiction of ‘the end of someone’s time’ had a profound effect on me. Every second is precious; we should appreciate and cherish each one. Having had a cancer, most women are acutely aware of the fragility of life. Unfortunately, many people who have not been exposed to this, don’t grasp how precious every second is.
The secret is to understand that we are all in the same boat. And in the words of Time: “Everyone parts with everything eventually, my dear.”
The point made about not being able to change the past is crucial. Accepting the new you, maybe without your boat (in Alice’s case), is critical.
As Alice said, “I learned that I may not be able to change history but I can learn from it.”
Learn from history
Dealing with the concept of a different you that has to continually worry about cancer coming back is equally traumatic (Read Cancerlitis).
Remember your shipmates and your team at the tea party when the thought of the Queen’s guards enter your head via the thoughtless comments of others. Do lie down like the Hatter. Do not give up. Speak to your trusted confidant – the butterfly. See a survivorship specialist and remember that just like someone with diabetes or HIV, you too can master your destiny.
Exercise. Eat well. Contact The Pink Parasol for advice about what you can and can’t take with your medicine. The Pink Parasol is my Disney version of Mary Poppins’ umbrella, and as she sings “a spoon full of sugar makes the medicine go down.”
Time is on your side. You’re going to have many fabulous adventures and remember in the words of Alice, “The only thing worth doing is what we do for others.”
Managing common side effects
- Tiredness: exercise and caffeine.
- Memory loss: practise suduko; music; write down important info. For the IT gurus – Google Keep or alternate diary organisers (I have a little pink write-it-down book).
- Weight gain: check thyroid; watch food input – different diets are for different people; green tea; and output – exercise.
- Peripheral neuropathy: take vit B. If it’s really bad ask your survivorship specialist to mix Neuroplex, Neurontin and Vaseline topical.
- Hair loss: Nioxin shampoo, or Minoxidil solution.
- Hot flushes: Omega-3; vitamin E, or Menograine/Dixarit or Venlor/Effexor on prescription).
- Night sweats: sage tea.
- Vaginal dryness: vaginal oestrogen weekly is safe.
- Feeling down/depressed: certain anti-depressants are safe and others are not. Taking these medicines is good, if you’re down. So, do so.
MEET OUR EXPERT – Prof Carol-Ann Benn
Prof Carol-Ann Benn heads up breast cancer centres at Helen Joseph Hospital and Netcare Milpark Hospital. She lectures at Wits University and, in 2002, established Breast Health Foundation.