Cancer diagnosis? Make a plan and take control!

Linda Greeff is a social worker focussed on cancer support. In 1997, just before she joined Cancer Care (formerly GVI Oncology, a large, multi-disciplinary private sector oncology care chain), she was diagnosed with ovarian cancer. Doctors removed a tumour the size of an ostrich egg and luckily, no chemotherapy or radiation was necessary.

Her cancer was picked up during a routine gynaecological examination. This Discovery Health Medical Scheme member is passionate about early detection: the single most effective thing for successful intervention, she believes.

Veteran oncology social worker's top advice

“Ironically because of the stigma cancer carries, too many people avoid a check-up when they suspect something is wrong,” sys Greeff. “There’s often a sense of dread and death, which is understandable, so people avoid the possibility of having a diagnosis confirmed. The moment your cancer diagnosis is made, see an oncologist. They’re the experts. Too often a GP will refer you to a surgeon, but the surgeons are the mechanics, so to speak,” she asserts. Her experience is that a cancer patient’s long-term survival is most impacted by the first treatment intervention. Her top advice is to get a good oncologist, supported by a multi-disciplinary team.

“If you run into professional headwinds, speak up, take charge and collect the resources you’re comfortable with. Basically, build up your own team. But you don’t have to do this on your own,” she says. She cites the United States where trained cancer navigators, (usually social workers), help patients navigate the system, much like the Discovery Health Medical Scheme’s Oncology Liaison Managers and Case Managers who handle the administration of affairs for affected members well into the cancer journey. “Navigators are excellent support for patients. After all, it’s deeply unfamiliar territory. So, if a navigator is not provided, get the best one you can or draw on an eclectic bunch of resources,” she adds.

“There’s now every reason to take control and, the earlier the better. When you’ve got over the shock or denial linked to your diagnosis and are coming to terms with the type and stage of your cancer, it’s time to sit down and plan every aspect of your soon-to-be fundamentally altered life. Access high quality, well-validated information; it’s out there and in your oncologist’s head and files. Remember, even if you have a Stage IV cancer it’s not a death sentence. Every cancer is unique with 300 different associated illnesses and each bodily organ has its own unique characteristics, so cancer treatment protocols can be complex,” adds Greeff.

No such thing as a stupid question

“There’s no such thing as a question that’s silly or irrelevant. If it matters to you, it’s worth asking the question,” she says. “So, ask about what your treatment options are. Will the treatment be adjunctive, curative or palliative? What can I expect in terms of quality of life? Is one treatment option better than another? Consider your diagnosis and cancer stage. Will I be able to continue work? What will my medical aid pay for? What does my cover offer? Should I upgrade to a higher plan?”

 It’s no sign of weakness to seek emotional support

Right from the outset it’s important to get psycho-social support. “Cancer impacts on your emotional, physical and spiritual wellbeing, it impacts your family, your friends. It’s no sign of weakness to seek emotional support. Whatever you’re feeling falls within the normal and widely-ranging set of reactions to a life-threatening illness, so accept your reactions and emotions and seek support,” says Greeff.

She tells instructive stories from experience with her patients, especially what can happen if you let fear overwhelm you for a protracted period: not a good idea therapeutically. She recalls counselling a businessman, newly diagnosed with prostate cancer that had metastasised, who was too afraid to tell his wife and children and chose to carry the burden on his own. Lonely, isolated, frightened and depressed, he underwent chemotherapy for three months, unbeknown to those who loved him most. Constantly home late and evasive or unconvincing in his reasons, his wife thought he was having an affair. So, one day she followed him to the chemo rooms. Far from being relieved, she was outraged at the broken trust and subsequently divorced him.

Says Greeff, “When you don’t speak to your family, you push them away. You need all the support you can get. Rather cry and express the emotions. Get it out. The stress also impacts your immune system and prevents it fighting the cancer properly.”

"When it comes to cancer, there’s no such thing as a question that’s silly or irrelevant. If it matters to you, it's worth asking the question"

Early signs

The good news is that all the most prevalent cancers in South Africa (skin, breast, cervical, prostate, testicular, colorectal and lung) are curable. Greeff offers a symptomatic blueprint for early detection. Pay attention to and seek medical help for:

• A lump anywhere on your body
• A cough that lasts longer than two weeks
• Any unusual bleeding (from any orifice)
• A wound that won’t heal
• A change of bowel or urinary habits
• Any persistent bruising (sometimes an early indication of Leukaemia)
• A sudden total body itch (possible indicative of kidney cancer or lymphoma)
• A mole that changes size and colour
• Sudden weight loss
• Constant fatigue or any uncharacteristic tiredness
• Night sweats
• Constant headaches
• One eye drooping (possible neurological cancer).

“Go to your GP immediately in the case of these symptoms and if they minimise the symptoms, go for a second-opinion,” says Greeff. “In their pre-grad years, medical students get two weeks of cancer courses, something the Cancer Alliance is actively lobbying to get changed for both GPs and primary healthcare nurses, both while qualifying and also during their continuing professional development.”

Post-treatment check-ups: vital

“After treatment, regular check-ups are of utmost importance,” says Greeff. “Around 14% of all cancer patients will be diagnosed with a subsequent, but unrelated cancer, while the relapse or recurrence risk for the same cancer is 8% to 9%. Also, the older we get the higher the chance of being diagnosed with cancer. Ask your doctor what to look out for, what the long-term side-effects are of treatment, and again, take control and draw up a Survivorship and Rehabilitation Plan.”

Greeff feels strongly that there’s currently insufficient focus on rehabilitation. Breast cancer surgery can leave you with a lack of shoulder mobility (stretched skin, maladaptive muscle), brain tumour surgery may require speech therapy. Many procedures create physiological side-effects that are acceptable as part of a cure or disease mitigation, but need further intervention.

“A lot of people do nothing and don’t get back what they can get back,” says Greeff. Then of course there’s the role of diet and exercise, supplementing your food intake with vitamins and minerals where needed and taking care of your emotional wellbeing, which all need conscious engagement so that you can live for as long and as well as possible. “I often tell people to also pay it forward as part of the therapeutic journey. Get involved in some cancer charity work. Find a cause that speaks to you,” she adds.

Don't die while you're living

Even for people in the final stage of advanced cancers, it’s important to live until you die, not die while you’re still living, and be aware of the need for an individually-tailored palliative care plan.

“Prepare for the possibility that time is limited by writing up and discussing a Living Will with your family, refer yourself to a Hospice sooner rather than later (getting on the programme can take a while), find a specialist in pain management such as the new breed of physicians trained by experts like the University of Cape Town’s Dr Liz Gwyther, Chairperson of Hospice and Palliative Care Association of South Africa, and Dr Michelle Meiring, Director of the new PaedsPal Palliative Care Unit in Rondebosch, Cape Town,” says Greeff. “Investigate the care offered by your medical aid: Discovery Health’s Advanced Illness Benefit being an excellent example of care on offer to patients with advanced illness. There are options that fully cover palliative home care, including a co-ordinator. But, most of all, get on with life and enjoy your family or the things you love.”

Greeff has seen the massive benefits of putting in the work required by what she terms anticipatory grieving. Saying goodbye to everyone who counts in your life takes time. “If done well, you have a good death and the grief of your family will be much less traumatic because of this sharing,” she says.

Again, she gives an example of how a social worker (or any proficient facilitator), can sometimes make a huge difference. Several years ago, she worked with a young woman who had advanced ovarian cancer and whose family were convinced that simply being positive about everything would make the desired difference. Even fear could be banished by simply thinking positive thoughts, she was told.

Frustrated and tearful at nobody wanting to talk about her impending death, this woman asked Greeff to arrange a family meeting. Here she addressed each member of the family, telling them how much she loved them and what they each meant to her, promising to try and be more positive. They in turn shared their feelings for her. They enjoyed a bottle or two of wine afterwards. Two weeks later she died, peacefully and without regrets. “The family were so grateful. They’d all said what they wanted to say and held onto her words with great appreciation. Openness and vulnerability are not negative. Speak and prepare your families and children for what will happen,” says Greeff.

Another patient tip from her regarding this phase is to leave some kind of legacy. “Make a video, write a letter, compile a photo album,” she urges. To this day, she still has clients who recognise her years later and thank her for having helped them to have the hardest of conversations. For those left behind, there’s the after-care for grief, helping them to find closure, and avoiding possible long-lasting and debilitating depression. Again, the message is don’t fly solo - you risk a crash and burn. Get the help you are entitled to.

Societal challenges can be obstacles to treatment

The Cancer Alliance has launched its Cancer Tool Kit and will each month elaborate on one aspect, in line with the WHO’s cancer goals.

Education is a vital part of advocacy and Greeff wants to get a cancer awareness drive going in primary and high schools to increase knowledge and reduce stigma, using ideas from the Live-Strong Foundation to South Africanise a curriculum.

“It’s all about stopping cancer before it gets started whenever possible, treating and mitigating the side-effects if it does, and handling it gracefully and minimising pain if it becomes incurable. All this while creating the best quality of life possible for patients,” she adds.