When cancer survivor Lizelle Knott was diagnosed with breast cancer, there was one thing that she just couldn’t accept: losing her hair. Again.
At age 16, Lizelle had been diagnosed with Stage IV Lymphoma, and the treatment made all her hair fall out – a devastating experience for a young girl. Now a wife and mother, Lizelle had no choice about fighting cancer a second time – but this time, she made up her mind to hang onto her hair.
Like so many who have grieved the loss of their hair, for Lizelle this wasn’t about vanity, it was about privacy. Having the right to decide who gets to know that you are sick, and how they learn about it. With a fifteen month old toddler to consider, Lizelle also wanted to look “normal” for his sake.
Psychiatrist Dr Tanveer Baig of the Royal Marsden Hospital in London says that hair loss is the symptom associated with the most distress two months after surgery; as many as 8% of cancer patients say they considered refusing treatment because of expected hair loss.
On the other hand, according to Dr Baig, there is increased tolerance for the other side effects of chemotherapy if hair loss can be reduced.
Lizelle had heard about a non-invasive treatment which can prevent hair loss during chemotherapy, and decided to try it with the support of her oncologist in East London.
The principle is simple: Hair grows from follicles lying just below our scalps. They are energy rich and require a good blood supply. If the scalp can be kept cold enough, growth activity in the follicle is suppressed, reducing blood flow. What’s more, the small blood vessels around the follicles constrict, allowing minimal blood to get through.
The first few hours of a chemotherapy treatment is a critical time to protect the hair roots so that hair does not fall out. So how hard can it be, just to keep a cool head for those few hours?
In practice, it was far from simple to rescue her crowning glory! The use of Cold Caps to prevent hair loss during chemotherapy was trialled in Europe as long ago as 2000 and is now going through further tests in California and New York. So far, the trials have shown an 81% success rate. As many as 50 000 patients worldwide have tried scalp cooling, yet it’s still not well known nor offered in most cancer treatment centres.
Undeterred, Lizelle persisted with the help of resourceful staff at GVI Oncology in East London, who put her in touch with GVI Cape Town (Sandton Oncology Centre in Johannesburg can also help). East London had two Elastogel Hypothermia Caps, and she was able to obtain another four from Cape Town – but figuring out how to use them was quite a challenge.
The caps contain a gel and are designed to wrap tightly around the head. They must be frozen to minus 30 degrees: a domestic freezer is not nearly cold enough. Lizelle had to order dry ice (the stuff that smokes!) and make her own mini-freezer out of a cool box, using newspaper for extra insulation. A negative-temperature infra-red thermometer is essential to make sure the caps are adequately chilled.
Four hours before chemo was due, all six caps would go in with the dry ice. From an hour before the chemo administration until 3 to 4 hours afterwards (Lizelle managed six hours!) the scalp is cooled with a new cap every 20 – 30 minutes. At this stage one needs a partner or friend to assist – it’s very “hands on” and nursing staff are too busy with their own duties.
Intense cold can burn, and to protect exposed skin, Lizelle came up with a neat idea: cut up panty liners and tuck them under the edges of the cap to protect ears and forehead. Dampening her hair before fixing the cap in place also helped. Lizelle’s husband dug out his welding gloves for handling the caps and dry ice – ordinary kitchen gloves wouldn’t be thick enough
Lizelle also used strapping over the cap to make sure that it was in contact with as much of the scalp as possible. She wasn’t taking any chances!
Studies overseas have shown that scalp cooling is well tolerated by most people, though it’s not unusual to have discomfort or a “brain freeze” headache for the first few minutes. (If you’re a migraine sufferer, it might not be possible to use a cold cap). But you’ll get cold and will need to wear warm clothes or wrap up well. Lizelle had two electric hot water bottles to keep her comfortable during the freeze.
As is common with chemotherapy, Lizelle’s treatments took place once every three weeks. But the hair rescue isn’t confined to scalp cooling – even with cooling, the roots are weakened, the scalp is dry. Constant TLC is necessary to keep hair looking good.
Lizelle advises: “Once a week I washed my hair with cold water and baby shampoo. Do not wash your hair in the shower as this will cause a lot of knotting. It happened to me and my poor husband spent hours combing through the knots. Rather have someone wash your hair in a handbasin or over a bath using a handshower. And whatever you do, don’t tip your head over! Wash it sitting, like at a hairdresser.”
Lizelle even slept on a satin pillow case to minimise hair stress. There was some hair loss – probably because that first treatment wasn’t cold enough – but no need to cover up. By her sixth and final chemo session, Lizelle’s hair looked like this:
Result! In addition to the major morale booster of being able to prevent hair loss, Lizelle also followed a vitamin supplementation program from Annique which helped her to get through the weeks of treatment with no side effects beyond occasional tiredness.
Like other patients with a good outcome from Cold Cap Therapy, Lizelle is keen to raise awareness of this option. But so far it’s had a cool reception amongst doctors and nurses in oncology (see www.rapunzelproject.org/news for more information and links).
This is not really surprising – scalp cooling is not new, and it didn’t work at first. Besides, this is all about cancer and what if cancer cells also survive the cold? Dr Hope Rugo of University College San Francisco, who is leading the current study in the USA, points out that cooling systems have improved and are now capable of being fully effective.
Some centres overseas have installed systems such as DigniCap, that pump coolant into the cap so that it doesn’t have to be changed and re-strapped – though this means more time in the treatment room.
As for cancer spread, Dr Rugo’s review of 83 scalp cooling studies found that metastasis to the scalp is extremely rare.
Doctor and breast cancer survivor Heather Millar notes that Cold Caps don’t suit everyone. Some shapes of head may not allow enough contact, and some people’s hair (ironically) may be too thick – though it has been shown that both Caucasian and African hair can be saved by Cold Cap therapy.
Success may also depend on the particular combination of chemo drugs you have been prescribed – or it may be that you need more extended chemo, which would make Scalp Cooling impractical.
Scalp cooling is not appropriate for those with a blood cell cancer such as leukaemia or lymphoma, who need chemotherapy to reach every blood vessel however small.
Other body hair, eyelashes, eyebrows still fall out. It is the loss of this hair that “proves” the success of the Cold Cap in cases where it is successful.
But as Dr Millar says: “Hair loss isn’t trivial. What are the first things other people notice? They notice your face and your hair. The prospect of going bald was the first thing that reduced me to tears after my diagnosis”.
A year later, Lizelle has put chemo firmly behind her, but she’s still on her “Pink Ribbon Journey” and is passionate about communicating to fellow cancer patients they CAN keep most of their hair despite chemotherapy.
Scalp cooling may be (for now) the “road less travelled” but it certainly can make all the difference.
Dr Millar’s blog entry: blogs.webmd.com/cancer/2012/03/chemo-means-going-bald-not-necessarily.htm
Researchers gather at the Royal Marsden: http://news.cision.com/se/dignitana-ab/r/researchers-gather-at-the-royal-marsden,c9310526
Katsimbri et al, “Prevention of Chemotherapy Induced Alopecia”, European Journal of Cancer, April 2000: http://www.ncbi.nlm.nih.gov/pubmed/?term=Eur+J+Cancer+36%3A766-771%2C+2000
Picture credit: https://m.youtube.com/watch?v=UXSyBDgnOx8 – go ahead and make those pretty snowflakes, you know you want to!
Sometimes, it can seem as though breast cancer is everywhere: everyone knows someone, everyone’s family is touched by it.
The chord struck by breast cancer is evident in the avalanche of pink ribbons that’s everywhere from the Internet to our streets, and the many stories of those who have survived as well as tributes to those who did not.
There are many spin-offs from this high level of public awareness, and one of them is ready funding for more research, which is showing great results.
But even though the general public may be more aware of “breast cancer” than is true for most other forms of cancer, international research shows that most women who have been treated for breast cancer, do not know what kind of tumour they had. Yet from any doctor’s point of view, this is first-ranking information!
Momentum Health’s JUMP magazine recently interviewed some top South African breast cancer specialists to find out what they regard as the most important facts about breast cancer (see Issue 1, 2015).
So here’s what you should know:
* Don’t panic. The great majority of lumps that appear in breast tissue are not cancer. But don’t ignore a lump either – expert advice is needed to determine whether or not you need further treatment.
* Like any other cell, a cancer cell has its own specific programming which tells it how to behave: its genetic material or DNA. This includes the likelihood of spreading to other organs, the speed at which it grows and divides to form new cancer cells, and even how it will respond to various forms of treatment. That’s another reason to get immediate expert help, because no matter how small it may be, an aggressive tumour will soon become a much worse problem.
* Patients should know about the four main types of breast cancer and the treatment you can expect for each one – if you are able to catch it at an early stage.
1. Luminal A: The most common type affecting around 70% of patients and especially older women. Treatment is by cutting off the supply of oestrogen (female hormone) that feeds it; you’ll be on anti-oestrogen medication for up to five years but you won’t need chemotherapy or any other treatment.
2. Luminal B: This less common type also needs oestrogen to thrive but can continue to grow without oestrogen, so in addition to anti-oestrogen medication you will be offered a course of chemotherapy to achieve a better result.
3. HER2: This is a form of breast cancer that usually has a family history. It is treated – with much success – by a combination of chemotherapy and “molecular therapy” targeted specifically at the cancer cells.
4. Basal: This fairly rare form of breast cancer (affecting 5 – 10% of patients) will not respond to anti-oestrogen treatment, you will need chemotherapy to beat it.
* Family history is important. Although medical schemes are reluctant to cover the cost of genetic testing, if you have close female relatives with breast cancer and/or ovarian cancer – especially if the cancer occurred at a younger age or in more than one site – it may be worth paying for the test to be done. Not only will you know your risk now and in the future, but you may be able to avoid unnecessary chemotherapy.
* The big research focus in breast cancer treatment: Molecular therapy. Already available in some forms, these treatments are very expensive but over the next few years, the cost is expected to come down to the point where individuals and medical schemes can afford it. As more is known about the genetics and specific chemistry of cancer cells, medical science is acquiring the means to target these cells specifically. This means cancer cells can be wiped out with no damage to healthy cells, no hair loss, nausea, pain or other nasty side effect of chemotherapy.
* More advanced cancers require much more aggressive treatment: surgery, chemotherapy, radiotherapy and hormonal therapy may all be needed. These cancers will be labelled Stage 3 (i.e. a larger lump which has spread to the lymph nodes in the armpit, or to other parts of the body); or Stage 4, a cancer which has spread to more distant sites (metastasis).
* The stressful time of waiting to find out whether you have cancer has been cut down to 48 hours in most cases. It will take a specialist no more than a few minutes to perform a biopsy and the lab will call your doctor with the results within two days.
* If it’s big enough to feel like a lump, simple surgery won’t be enough. Not even “Stage Zero” cancers (picked up on X-ray or ultrasound) are necessarily safe to leave untreated. Cancer cells that spread via the bloodstream to other sites can lie dormant for years (or be suppressed by your own immune system), with the potential to cause metastatic cancer at a later stage. This is where genetic testing comes in: if the genetic profile of the cancer is known, doctors can make better decisions about how best to target those cells, wherever they may be.
* Prevention can save your life. Experts support women like Angelina Jolie who make the difficult decision to remove hormonal tissue (breasts and ovaries) that are at risk of inherited cancer. If you have one of the gene mutations known as BRCA1 or BRCA2, your lifetime risk of cancer can be as high as 90%. Angelina’s choice has dropped her risk to 2%. Remember, family history on BOTH sides of the family is important, as both fathers and mothers can pass on the faulty gene and the increased cancer risk that comes with it.
* Mastectomy is no longer the great fear it once was – but also no longer a simple, quick job for a surgeon! Patients want to look and feel “normal” afterwards, with healthy parts of their natural breast spared and restored. With the help of a plastic surgeon, this can happen immediately after the removal of the breast tissue, leaving only two small scars. Always discuss reconstruction with your oncology surgeon and if in doubt seek a second opinion.
* Cancer changes your life, and it should. Not only should you expect treatment to continue for several years, you will probably want to revise many aspects of your personal health. For instance, It’s now known that regular exercise and maintaining a healthy weight offer a greater improvement in your chances of living a long, healthy life than even chemotherapy.
* Add to that Vitamin C and D supplementation, calcium for bone health (very important if you’re on anti-oestrogen therapy which can weaken your bones), a cut in sugar and starch to improve insulin sensitivity, and well maintained blood pressure. What’s the point of surviving cancer only to suffer heart disease or a stroke that you could have avoided?
This holistic approach is not a reason to avoid taking advantage of the latest medical research into chemotherapy and especially molecular therapies – but it is a reason to celebrate health.
So – since knowledge is power – let’s get into the pink and take to the road!
Breast cancer patients tend to be a well informed bunch, who turn up to medical appointments with print outs and well considered questions.
However, a recent study in California found that only a small minority of breast cancer patients understood all the key aspects of their tumours.
The stage, grade and sensitivity of your tumour determines the type of treatment you will have. Whilst thorough patient education would not necessarily change the outcome of the treatment in a direct way, it is likely to improve the patient’s experience of that treatment as well as her ability to stick with it.
All of this key information is available soon after you have your first surgery. Staging indicates the spread of the tumour – how big it has grown as a single clump of cells, and/or how much it has been able to travel to other areas.
Sensitivity to Oestrogen (Estrogen in America), to Progesterone and to Epithelial Growth Hormone or HER-2 is a key element of treatment because if cancer cells need these hormones for “fuel” then by blocking the hormones the growth of the cancer cell will also be blocked.
Grading refers to the general aggressiveness of a tumour. If it’s made up of cells that are fairly similar to the healthy cells around it, but different to cells in other body organs, that is a low grade, less aggressive cancer. Cells that are more abnormal – more dedicated to being a cancer cell than to the function of the tissue they’re in – are higher grade and more aggressive.
Knowing more about your cancer enables you to feel “part of the team” and to take more responsibility for your treatment, as well as to know what questions you want to ask (or not ask).
This will ease your stress – you’ll feel much less helpless – and may help you deal with difficult side effects of the treatment such as hormone changes or chemo side effects.
For most people today, the idea that “doctor knows best” is no longer enough. We want our doctors to be experts but we want to be knowledgeable as well! For doctors, this means that patient education is an important part of the treatment, time consuming as it may be.
Just a treatment is individual – there is no “one size fits all” in breast cancer – so patient education also needs to be individualised. The level of explanation that is helpful for a University professor isn’t likely to be as helpful for a domestic worker, but both women need to be as informed as they can about what’s going on with the cancer and the process of treatment.
There’s good news for doctors here too – patients who understand the basis for their treatment are more likely to be satisfied with the treatment, and to value their relationship with the doctor throughout their journey with cancer.
Uluru, also known as Ayers Rock, is a geological feature at the heart of Australia with huge cultural significance to people living there. For indigenous Australians, it is holy ground, representing millenia of history, mythology, and their symbiotic relationship with the land. Every inch of this awe inspiring rock is celebrated, represented, and connected with places far and wide across Australia through the “song-lines” which unite and re-unite people over time. Uluru is the ultimate Memory Space and a focus of healing for the peoples of Australia, both ancient and recent.
In Africa we say “Umuntu ngumuntu, ngabantu” which means “a person is a person because of other people”. This finds expression in traditional African values around community and belonging.
Psychologically, it is both constraining and liberating to hold this value. As individuals, we could feel smothered by a sense of responsibility for others or the demands of others. Yet, the knowledge that our very individuality is gathered by, with and for others infuses life with meaning and hope. This is especially true when illness, injury or loss shake up our ordinary lives until nothing is “normal” any more.
Recently C, a wise and creative patient introduced us to the technique of the “memory space” as a guide and support through the process of cancer diagnosis and medical treatment. The idea was to use a dedicated space in her own home, to represent the experience of being diagnosed with breast cancer and of going through surgery. By inviting people who counted in her world, and who were interested in helping to create this special space, C began to share the burden of having cancer, as well as the hopes she had for the next steps in her journey with cancer.
C has kindly given us permission to share this initiative via our website. It is a valuable exercise not only for recently diagnosed cancer patients but for anyone who is facing a personally devastating change or loss – whether that be divorce, illness, emigration or bereavement.
Of course, it’s not easy to talk about cancer to others – especially when you’re still trying to get your own head around the news. The story is often shared with a chosen few; who usually try to respond in loving and supportive ways (though see our post on What Not to Say to Someone Who Has Cancer).
C’s many years of experience and research in psychotherapy alerted her to the knowledge that more is possible – a deeper experience of Ubuntu and of love. Those invited to the ceremony were encouraged to bring whatever they felt moved to share: a note, a card, a piece of writing or music, a picture, an object with shared significance, a joke. The brief was fairly specific: the guests express their feelings about the cancer diagnosis and proposed surgery, offering a personal response to the impending loss of C’s breasts (she had decided on medical advice to have all breast tissue removed).
The ceremony took place on the weekend before surgery was scheduled. C asked a trusted colleague with extensive experience of group therapy to act as “MC” and guide. For a potentially emotional group experience this is a valuable safeguard for everyone present. It also allowed C to experience the event without feeling responsible for its process. This might not be necessary if the group involved is small and well known to one another, but C’s ceremony involved more than a few people, not all of whom knew each other well.
Taking turns, each person introduced his or her personal contribution to the Memory Space, explaining how their chosen item fitted in with C’s life and with the occasion. This stage of the meeting had a level of formality that allowed it to be a serious occasion and a fitting recognition of the dire situation C was facing – and yet still made room for joy and humour to be felt and shared. After presenting the item, it was placed on a central coffee table and remained there with the other contributions.
After everyone had presented their offering, time was allowed for quiet reflection on what had been said or shown, and then for C to respond. The formalities brought to an end, there was time for people to relax, drink some wine, and enjoy themselves.
Although this ceremony served to express the feelings of C’s community as they faced cancer together with her, it did not provide any diversion from the huge challenges C and her partner had to deal with as they waited for treatment to begin. The time between confirmation of a breast cancer diagnosis and the first surgical or medical intervention is often very difficult, being marked with uncertainty, grief, and waves of unrelenting anxiety. The Memory Space ceremony did not provide an escape; as C noted, “it is what it is”. C is right: a full experience of life includes difficult, painful moments as well as high points and moments when there’s nothing much to worry over.
The Memory Space did, however, achieve something amazing: a ‘safety net’ in the presence of this anxiety, in the form of an alternative story that C found (and continues to find) emotionally healing. The gift of her family, friends and colleagues did not neutralise the cancer story, but it did mark out a safe space. In the weeks that have followed, C has been able to inhabit this space where she knows herself to be surrounded by love and affirmation.
Whenever she lingers in the Memory Space, C is able to feel less helpless or insignificant. Her Memory Space is a psychological and spiritual refuge.
One other thing is clear: the Memory Space technique is not aimed at achieving “closure”, whatever that may be. Perhaps there is no such thing as “closure”: joy and sorrow, loss and restoration, pain and peace do not oppose and exclude one another in human life as they do in language. Instead, we constantly move between these experiences and the one leads seamlessly into the other.
This is a common if not universal experience of life: sunshine and shadows, rain and drought, assurance and anxiety, pain and peace. The ancient Greeks said, “nothing endures but change”. Yet the creation of a memory space like C’s ensures that whenever cancer is experienced as ravaging and taking down hope, options remain for honouring and healing body, soul and community.
The Memory Space is a concrete representation of an alternative story – alternative to the story of cancer and of medical treatment. Such stories have great power over our imaginations. Aristotle taught that the human imagination compels, conditions and changes thought, emotion and even physical states. Stories of all kinds have the power to evoke healing imagination, but especially those that endure from ancient times.
A well known “dreamtime” story of Australia concerns the Rainbow Serpent, who travelled across the landscape creating and destroying life and uniting humans with the landscape. One version of the story is here: https://m.youtube.com/watch?v=
In his frantic search for belonging, the Serpent goes through all the feelings we do at times of great challenge in our lives: loneliness, loss, exile, weariness, rejection, fear and rage. There is no “happy ending” in this story. Serpent and people cannot live together and both are forever changed by their conflict. Yet they do come to terms, and survival becomes possible. The ancestral home of both Serpent and people is destroyed, yet everyone gains something. The Earth is brought back into balance, but only if the people will take responsibility and will care…
The great myth of the Rainbow Serpent fits well for personal journeys with cancer and other life threatening illnesses. As actors in this story, we are not in control of Nature and never will be – but we can care and we do appreciate the beauty that is around us and within us.
To C: Thank you for reminding us that the Rainbow Serpent of cancer is a builder as well as a destroyer, and that no one need face him alone. Thank you for sharing your personal experience of this beautiful technique with us, and with our readers.
As Joanna Moorhead of the Daily Mail recently wrote, the most inappropriate comments and messages have, at least, provided some laugh-out-loud moments after she was diagnosed with breast cancer. But with just a little effort, we really can do better. Here’s a guide to What Not To Say, and a few suggestions of better options.
1. Nothing at all. Not saying anything is fine if you have another way to be there for someone who’s hurting. Eye contact, a compassionate smile, a (welcome) gentle hug or hand squeeze, a small act of courtesy or kindness – all so important, and so much better than a verbal blatt. Actions really do speak louder (and often better) than words.
Yet even the blattiest, dumbest remark (“My friend died of breast cancer”, “Not another one with cancer, it’s too much”, “Oh no, I can’t lose you”, “What bad luck!”) may be better than silent avoidance, which leaves the person feeling isolated and rejected. People with cancer know it’s difficult for others -they’ve been through those emotions of shock too – but your absence is noted, and it hurts. It comes across as not caring, even though the truth is that you fear saying the wrong thing.
Rather, go for simple sincerity: “I don’t know what to say, that’s terrible news” is absolutely fine. You don’t need sophistication: “That sucks, I’m so sorry” is also quite OK. After that, let your friend or family member’s response guide what happens next. You are part of her life for a reason, so just being yourself is all that’s needed.
2. Meaningless platitudes. If you woke up with stomach flu and spent a couple of days feeling utterly washed out and miserable, would you appreciate a walking, breathing Hallmark card suggesting that you count your blessings and be strong for your family? No, you would not. So why would dealing with a longer term but equally unpleasant illness be different?
The fact that someone has cancer (or any other chronic illness) does not mean that he or she is unaware of the many wonderful blessings in life. Quite the reverse, in fact. Yet an ‘attitude of gratitude’ does not do away with pain and suffering, and “being strong” does not require an elaborate pretence that this doesn’t hurt. So dig deep and find a way to be there, alongside the suffering – be one of those blessings instead of talking about them.
3. False optimism. It’s good to get feedback from others that we are amazing, strong, capable and lovable people. But this is cancer, not a prospective job interview. Comments such as “You’ll be just fine” or “You’re such a positive person” – even if it’s true – are best avoided. It’s bad enough being diagnosed or treated for cancer, without also feeling that people will be disappointed if you’re not a noble example to everyone else.
On the subject of platitudes, how about ditching some tired metaphors such as “doing battle”? Cancer is not like Joan of Arc leading her troops into glorious battle – it’s more like riding the Tour de France on a broken bike with a heavy backpack. And it’s OK to be scared, or angry, or broken hearted, so show your loved one that you understand and accept this.
A good alternative might be: “I hope things get better/go well for you today/this week”. Hope needs to be reasonable if it is to be truly empowering, so keep it focused in the here-and-now.
4. Preaching and pontificating. A word to the wise: Cancer and other dread diseases have no “silver lining”. People can and do create beauty out of the worst of situations, because beauty dwells within us. Yet cancer is not a gift, and attempts to make positive sense of it are invariably unhelpful at best and deeply hurtful at worst. That which doesn’t kill you, makes you….nearly killed. ‘
Cancer is not a punishment, either. The person with cancer did nothing to deserve it and cancer is not God’s lesson plan specially for you. You can do all the unhealthy things and never have cancer, you can be an organically fed fitness fanatic and still get it anyway. Did that person do something wrong in a previous life? You may consider this query to be over the edge of insanity let alone insensitivity, but it’s actually been said!!
Again, rather keep it simple: Bodies are not perfect, many things go wrong with them, and cancer is one of those many possible things. Our efforts to understand and prevent it are, so far, very imperfect; and until we can do better cancer is just one of those things that happen to people.
Unlike bodies, “Words once spoken, never die”. You can’t unsay it. Rather, before gifting the other person with homespun philosophy, ask yourself: “Who benefits here?” The honest answer may be, “this is not about what you need, it’s about me and what I need”. If someone has cancer, try to hold this thought in mind: it’s about her, and her alone. This is a great time to show respect for the other person’s beliefs and choices, including preferences for medical treatment, quite regardless of how they compare with your own.
5. Being pushy and intrusive. On hearing the news of a cancer diagnosis, some people seem almost to pounce, as though drawn to be part of the drama. Such “new best friends” should be kept FAR away from anyone who is in cancer treatment, though over-intrusion can be a way to manage understandable anxiety over someone you love and fear to lose. But remember the mantra: it’s not about you, it’s about them. There is a time to arrive, and a time not to arrive….Unless invited, don’t say “I’ll come and visit you in hospital“. Most people who’ve recently had cancer surgery don’t want visitors other than their spouse.
People who are seriously ill experience constant intrusion into their personal space and a loss of control which doesn’t get easier as time goes on. So being extra-respectful of that space is a really good idea. Your loved one probably doesn’t look like she has cancer and certainly doesn’t need anyone to point that out.
As a person with cancer, you do not need someone to talk to you as if you were three years old and a bit dim or deaf, to ask intrusive questions (unless they are a medical professional and sometimes not even then), or to touch you when it’s not warranted or welcome. If in doubt, ask: Are you OK to talk about this now? Is it OK if I give you a hug? Can I give you a hand with that?
It is also not great to ask: “What are your chances?” Even doctors seldom give more than a general estimate based on experience and research. Cancer specialists will gladly say that patients have on occasion proved medical science wrong when it comes to life expectancy. And whilst most people prefer to stay optimistic, and to focus on stories of people who have come through cancer and are living rich lives, they are more likely to value prognosis-talk if they’re able to share what they’ve been told by doctors (or found out for themselves) without anyone judging it. Critics and cheerleaders are not needed – only kind and attentive listeners.
People who are ill will tell you that the most welcome visitors are those who are able to relieve the burden of thinking and talking about the illness all the time. Treat your friend or family member normally, talk about ordinary things, and if they do want to talk about cancer, listen more than you speak – really listen, not in order to reply, but in order to understand what they are going through.
It is good to be specific in your offers of help. A vague and general “Call me if you need anything” is nice to hear but not nearly so useful as “Let me…” followed by a specific offer of help based on your knowledge of that person’s life and commitments. Offers of help that are likely to be gratefully received include: help with workload, with transport, providing moral support at difficult appointments, finding information that is needed, and last but not least – financial help for important, morale boosting benefits that may not be available from medical aids, such as a wig or a really nice scarf.
It goes without saying that if you make any offer of help, you keep your promise without fail and show up. Including the person in your routine can be very useful – let them know if you’re on your way to the shops, will be in a position to pick up children, or whatever. And add a “no need to respond” to any and all communications. Since it’s not about you, there is no reason to take offence if your message isn’t answered or your call returned!
Cancer survivor and psychiatrist Elana Miller says that for friends and family, being in relationship with someone who has cancer is “an opportunity to show up and be the best kind of person who exists on this planet”. By words and actions, we can say “I love you” and “you matter to me” and “I am here for you”.
When days are dark and nights are darker, that can be literally life-saving because it stands as a constant reminder of a life worth fighting for, a destination worth reaching no matter what it may take.
Before puberty, there’s nothing there at all. Then – exciting or intimidating as it may be – breasts begin to grow, taking a few years to reach their final shape and in the process becoming an important part of our body image.
In human beings breasts are sexual organs, and it doesn’t take girls (or boys for that matter) long to discover that! Their exquisite sensitivity gives pleasure and their rounded shape helps define our womanly style – small and sporty, large and motherly, firm or soft.
During pregnancy and after birth, breasts have a new lease on life as we discover their miraculous capacity to feed our babies as much and for as long as we need to. Though not all women are able to breastfeed, with the right help and support most can enjoy this simple, natural way to bond with and nurture our young.
As breasts age, other changes take place which are completely normal – or at least common. Some are medically insignificant, such as the gradual change around the time of menopause from firm, dense glandular tissue to softer fatty tissue.
Others tend to draw attention and cause anxiety because until investigated we cannot be sure that they are harmless. These are the benign conditions of the breast or “aberrations of normal development”.
Lumps within breast tissue
Lumps are common, occurring not only in aging breasts but also sometimes in younger breasts. A lump is a small piece of tissue or area under the skin that feels firmer than the surrounding tissue and can be felt from the outside. It doesn’t usually develop overnight and won’t be noticed until it reaches a certain size – at which point finding it can cause alarm and concern.
Lumps that are medically concerning are those which stay there regardless of the menstrual cycle. Some women have naturally lumpy or uneven breasts and when the tissues swell under hormonal influence these “lumps” are more easily felt. For your own peace of mind, don’t hesitate to ask your doctor or nurse to check anything that worries you, but it’s the distinct lump which will require further investigation.
Worrying as they are, many such lumps turn out to be “benign”. This means that although it is not normal breast tissue and may be growing larger, it does not spread or invade other tissues, either locally or by travelling through the lymph system (as cancer cells do).
If you visit your doctor with a breast lump that worries you, he or he will ask you how long it has been there, whether you’ve ever had a lump like this before, and whether it is painful. In fact, nearly every breast lump that has been noticed is experienced as uncomfortable or painful, which is partly because of the worry they cause and perhaps also because it’s hard to resist checking it all the time.
The two main types of benign lump, though not normal, are fibroadenomas and cysts. Fibroadenomas are rounded, rubbery lumps that move under the fingers; they are more common in young women. If a patient younger than 20 finds a lump it is almost certainly a fibroadenoma and unlikely to need treatment unless it is uncomfortable, though it is best to ask a doctor to check it.
Between the ages of 20 and 40, fibroadenoma remains the most common form of breast lump but should always be investigated, as some breast cancers have a similar presentation. The doctor will feel the lump, may request a mammogram or ultrasound, and/or a Fine Needle Biopsy in which a sample of the cells is removed with minimal trauma. These tests allow your doctor to reach a firm diagnosis.
If the doctor is sure that the lump is a fibroadenoma no further treatment is needed, but larger lumps may be removed to relieve discomfort. If a woman wants to fall pregnant it’s also a good idea to remove the benign lump, as it is likely to get bigger during her pregnancy, causing anxiety at a time when there’s more than enough to worry about already.
Over 40, breast cancers are the most common form of breast lump but cysts are also common. These are hollow fluid filled spaces that form as glandular tissue in the breast ages and retract. Often they are small and can only be seen on an ultrasound, but larger cysts can be felt and sometimes they are hard and tender.
Fine needle aspiration of a problematic cyst will show that it is nothing to worry about – the fluid inside doesn’t look very nice being greenish and thick, but as long as there is no blood present there’s no reason to worry about cancer. A large, uncomfortable cyst should be aspirated to remove the fluid, but otherwise cysts can be left alone as they disappear naturally after menopause.
So, especially for younger women, the chances of a breast lump being non-cancerous or benign are good. However, it important to seek medical advice as there’s always that chance of being able to catch an early cancer – whilst some benign lumps become an uncomfortable nuisance that is best removed.
Even if you have previously had a benign breast lump and find another one that feels much the same, get it checked out. A history of fibroadenoma is associated with slightly higher risks of breast cancer, and knowing the previous size and position of benign lumps in the breast is helpful to your doctor when looking at mammograms or ultrasound pictures.
Since reaching a peak in the early 1990’s, cancer death rates have been steadily falling – at around 20% for women and over 25% for men. This is according to Cancer Research UK and the American Cancer Society.
Probable reasons for this improvement are:
– fewer people smoking
– improved screening and early diagnosis for common cancers
– more treatment options
– targeted drug and/or radiotherapy treatment
– new surgical techniques
– more effective treatment and prevention of co-occurring conditions such as diabetes, obstructive airways disease, stomach ulcers, chronic infection and so on
There are still challenges. Pancreatic cancer appears to be on the rise, and amongst women, lung cancer has increasing by around 8% (whilst falling amongst men).
This is thought to be the tragic harvest of 1960’s cigarette marketing, which successfully targeted millions of women by promoting tobacco smoking as an aid to slimming.
Whilst older women tend to take better care of their health, younger women sometimes fail to notice or to report symptoms that could serve as early warnings of cancer. These include:
– unexplained weight loss
– breast changes: lumps, thickening, persisting rash, discharge, nipple changes
– unusual bleeding
– skin changes (moles, pigmentation, scaling)
– difficulty swallowing
– blood in urine or stool
– gnawing abdominal pain especially associated with depression (may indicate pancreatic cancer)
– indigestion for no apparent reason
– white patches or spots in the mouth (especially if you are or were a smoker)
– unexplained pain: not likely to be cancer but get it checked out
– a swelling under the armpit, in the neck, or anywhere else
– unexplained fever (sometimes associated with early blood cancers)
– persistent fatigue, even if you think you have reasons to be so tired
– persistent coughing
There are a few ‘wild cards’ in our future whose effect on rates of cancer diagnosis and death are still unknown. The most worrying of these is the so-called “obesity epidemic”, especially insofar as it affects younger people.
Recent research has connected excessive sugar consumption with a variety of conditions including auto-immune and inflammatory conditions which may predispose to some forms of cancer. We really need to start dealing with this!
Port Elizabeth’s nursing professionals – community nurses, midwives, nurse trainers and hospital nurses – have a fantastic opportunity to develop clinical skills in breast care and the nursing management of breast problems. And thanks to sponsors Netcare, Carecross and Pathcare, the Breast Course for Nurses (BCN) is absolutely FREE.
Cape breast-cancer surgeon Dr Jenny Edge has run this training course for some years in Cape Town, and is now bringing it to Port Elizabeth.
The BCN has been adopted in University settings (UCT, US and UJ) as well as by Baragwanath Hospital and Netcare nursing. It is not formally accredited (in order to keep it affordable and accessible to all nurses) but has been well received over the past few years – see the BCN website for more information and feedback from colleagues.
The course begins with an Introductory day (19th May, 2014) in which two modules are presented. To take home, each participant receives a course manual specially written by Dr Edge and Prof Dave Woods.
This book uses the popular Perinatal Education Programme (PEP) format of affordable,enjoyable, practical education at a pace suited to busy nurses, to update knowledge of the most common and important breast conditions. Over the next six months, regular Multiple-choice Questionnaires keep participants motivated and up to speed with the main learning content.
The course rounds off in November with two days of practical workshops (details to be advised). Places are limited to a maximum of 50 participants and booking for the PE course is already going well, so don’t snooze or lose – call Lieske to book your place or ask your questions.
Date and Time: Monday, 19th May, 9am-3pm
Place: Netcare Training Academy, 1st Floor, Pamela Arcade, 2nd Ave, Newton Park
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For some time it’s been known that maintaining adequate levels of Vitamin D helps prevent cancer, especially colo-rectal cancer but also of the breast, pancreas and bladder. Now there’s evidence that women who already have breast cancer can benefit from increased Vitamin D.
A major review study reported in the journal Anticancer Research has found that women with high levels of Vitamin D in their blood when diagnosed with breast cancer showed improved survival rates (at average 9 years), compared to women with low Vitamin D levels.
The study involved 4443 patients with breast cancer and according to the statistics there is almost no probability that this difference occurred by chance – though further research is needed to see whether more severe illness can lower Vitamin D levels.
Improved levels of Vitamin D prevent cancer by helping cells to stick together. When cells are loosely packed they start reproducing at a faster rate and may evolve into cancer cells.
The presence of Vitamin D can keep a developing cancer in check by limiting its ability to develop its own blood supply, and/or to invade nearby structures like blood vessels. Dr Cedric Garland of the University of California, San Diego, told Medscape Medical News that up until a fairly late stage of development, cancer cells have intact Vitamin D receptors.
He recommends that women undergoing treatment for breast cancer should check their blood levels of Vitamin D, to keep it in the optimal range. And most women could use more Vitamin D. The average American would be in the “low” group whereas the “high” group had nearly twice as much Vitamin D.
Moreover, current recommendations for daily consumption are conservative: you would have to take a large amount of Vitamin D on a daily basis before signs of toxicity (such as thirst, nausea, stomach upset or muscle weakness) occur. This would be unlikely unless supplements are added to natural sources.
Vitamin D deficiencies by contrast are fairly common, especially in climates where winters are long and cold. Some of the study data came from Canada, but studies in Southern Australia have also found Vitamin D deficiency, so South Africans shouldn’t be complacent about our sunny skies. Here are some ways to keep Vitamin D in good supply:
– Sunlight. Make the most of the sun, especially in winter – it’s 100% free! You don’t need to risk getting burned – 20 minutes will do. After that, avoid the hottest part of the day or use sunblock, keeping the sun off your face if you want to protect your youthful good looks.
– Oily fish, which comes with a bonus of cholesterol-free protein and heart-healthy fatty acids. A generous serving of salmon, trout, mackerel, fresh tuna or eel will provide nearly all your daily requirement of Vitamin D. Canned fish is also good, though not as nice.
– Mushrooms. Not the pale ones grown in the dark – like us, mushrooms make Vitamin D from light. Portobellos or wild mushrooms are perfect. Picking your own is fun, but study them well as some are poisonous.
– Fortified products. It’s not the healthiest way to eat but some dairy products, fruit juices and cereals or porridge are fortified with Vitamin D, as are certain soy and rice milk products. This is an important source of dietary Vitamin D for many people and worth the extra cost.
– Egg yolks. Two egg yolks provide 80 International Units of Vitamin D, 20% of the daily requirement. There is now a consensus that eating eggs is healthy. They contain cholesterol and fat, but are one of very few foods that supply all nine essential amino acids and digestible iron, as well as important vitamins and minerals. The extra cholesterol makes little difference, which is offset by important benefits e.g. preventing age related eye disease. The lutein that helps your eyes actually protects against early heart disease, according to the American Heart Association.
– Calves’ (beef) liver. Also provides Vitamin A, iron and protein. Perhaps not the best choice if you’re watching saturated fat, but a useful meal to boost iron supplies, which are often deficient especially in women.
– Supplementation – Vitamin D from sunlight and healthy food can be supplemented if necessary. Most good quality multivitamins include Vitamin D and Calcium – Magnesium supplements with added Vitamin D are also available. Some people are unable to absorb dietary Vitamin D, and in such cases it might be justified to use UV lamps under medical supervision, to avoid severe loss of bone. But in general, it’s better to eat healthy food – veggies, fruit and whole grains – than to take handfuls of supplements.
Cod liver oil, a traditional remedy and tonic is sometimes recommended. It is high in Vitamin D but also in Vitamin A which isn’t as likely to be deficient and can be hazardous, especially to small children. Recent research has cast doubt on the usefulness of fish oil supplements. Rather eat whole fish for balanced nutrition or use a plant-based source of Omega-3’s (flax seed, pumpkin seed, walnuts, canola).
So the consensus is that Vitamin D helps prevent cancer and assists in cancer treatment. It is often deficient even in sunny climates but with a little planning can be included in a ‘food state’ form without need for supplementation. If you do supplement, take into account how much you get from your diet and/or sunshine, and if you’re undergoing cancer treatment, ask your doctor to check your levels of Vitamin D to ensure that they are optimal.