“Rightfully a lot of attention is paid at the time of diagnosis and active treatment,” Dr. Al-Khaifi said. “Many breast cancer survivors have told me that while they felt they had a lot of information and support during their active treatment, once treatment stopped, they lost the continuity of care with the physician.”

It means patients are often left wondering what to expect, what to watch out for with respect to cancer recurrence, and what to do about ongoing side effects of treatment.

“After treatment ends, it’s very common for side effects to continue,” Dr. Al-Khaifi said. “It’s not just a ‘return to normal life.’ Pain. Lymphedema. Anxiety. Depression. Self-image changes. Sexual dysfunction. Menopausal symptoms that are caused by cancer treatment. And the fear of the cancer coming back. All of these contribute to the patient’s quality of life.”

Long-term survival rates after the diagnosis of breast cancer are improving, with a 5-year survival rate in Canada of 90 per cent.

“The continuing improvement in survival rate, coupled with an aging population, contribute to an increase in survival population. As a result, follow-up care with a focus on quality of care is increasingly important,” Dr. Al-Khaifi said. “Research shows that a quarter of breast cancer survivors report anxiety, depression and fears around recurrence, and anecdotally based on my experience with breast cancer patients, I believe the rate is much higher.”

Dr. Al-Khaifi wanted to improve the lives of breast cancer survivors and that’s why she developed and proposed the Sunnybrook Breast Cancer Survivorship Care Clinic. Currently she is the physician lead of the survivorship program at the Louise Temerty Breast Centre.

“I met a patient who had completed treatment and had a good prognosis. She was so acutely anxious of cancer recurrence and her self-image was so low after her body changes that she told me she didn’t leave the house. As a healthcare team, we have to support the whole person. We have to provide women like this with more support and resources after their active treatments like chemotherapy and radiation end.”

Dr. Al-Khaifi works with patients to create an action plan and address their side effects and concerns, and promote a healthy lifestyle to help reduce the risk of recurrence. She also works closely with family doctors to assist in the transition of care back to the community physician.

“Research shows family physician-led survivorship care is as good as specialist care with no difference in recurrence-related serious clinical events. Patients are generally more pleased with their care because it’s closer to home and more comprehensive, and their quality of life improves.“

The care is also individualized, she adds.

“Everyone is different, and everyone responds and reacts to cancer treatment differently. We use a practice-based, evidence-based and personalized approach to help support the whole person through their cancer journey.”

The approach can also have an impact on the healthcare system, she adds, by helping open up cancer physicians’ caseloads for active treatment patients.

“Plus, educating patients on what’s ahead and providing follow-up plans can help reduce fears, which reduces the demand for unplanned care and the amount of imaging, and the costs associated with that.

“So, this approach can be cost effective and beneficial for the healthcare system as well as patients. Further, this may support better coordination between cancer teams and family physicians through treatment summaries and survivorship care plans.”

The post Dr. Muna Al-Khaifi on closing the gap in breast cancer treatment appeared first on Your Health Matters.

In a room at the Odette Cancer Centre, shelves of neatly arranged wigs and head coverings line the walls. They’re free for patients who’ve lost their hair from chemotherapy or other cancer-related treatment. Many of the wigs sit atop expertly handcrafted wooden wig stands, which are also available free of charge to patients.

Woodturner Allan Cooper says his wife lost her hair due to chemotherapy nine years ago. In an attempt to add something beautiful to her life, the retired lawyer made her a wig stand. Although she has since passed away, he’s been making and donating them to the hospital ever since. 

“I decided the hospital could use something more attractive than the Styrofoam heads,” he says.  

In addition to creating his own wig stands, Allan Cooper also collects stands from other woodturners across the province.

Allan also collects stands from other woodturners across the province. In the last two years, he’s collected more than 150 wig stands for donation, with no two being identical. “Wigs are very important to patients going through chemotherapy. Having a stand to place it on gives it the respect it deserves,” says Erin Di Lella, volunteer coordinator at the Odette Cancer Centre. “And these stands are beautiful works of art made with love.” 

Each stand varies in finish, from a clear lacquer that showcases the wood grain to colourful paint.  

Volunteers at the cancer centre say patients are comforted knowing that somebody took the time and energy to make such striking showpieces. 

“The object of life is to try to improve life for other people,” Allan says. “When somebody has an illness, it’s not difficult to make their life just a little bit better, [to] add something unique, make them feel special. So, if I can make them even a little bit happier, then I’m satisfied.”

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The Answer: The neuroendocrine system is made of a network of specialized, nerve-like cells that can produce and release hormones into the blood stream. Neuroendocrine tumours are relatively rare and can present anywhere in the body but more commonly in the small bowel, rectum, appendix, pancreas or stomach. Half of these tumours secrete hormones such as serotonin that, in turn, have the potential to damage heart valves.

Since the symptoms – bloating, wheezing, flushing, diarrhea, persistent cough and loss of appetite to name a few – can be vague or generalizable to other medical conditions, it can take up to three years before patients are accurately diagnosed, according to Simron Singh, medical oncologist and co-head of The Susan Leslie Clinic for Neuroendocrine Tumours at Sunnybrook. Sometimes there are no symptoms until a patient is seen in emergency, which is consistent with your Godfather’s situation.

“Every month, we see cases just like what is being described,” said Dr. Singh, who co-heads the largest neuroendocrine clinic in Canada, at Sunnybrook’s Odette Cancer Centre, seeing about 200 new patients each year, plus up to an additional 400 in follow up. “Treatment is very individualized.”

You may recall that Steve Jobs, entrepreneur, inventor and co-founder, chairman and CEO of Apple Inc. was diagnosed with islet-cell neuroendocrine cancer, which manifested itself in his pancreas. He initially resisted recommendations for mainstream medical intervention, instead consuming an alternative medicine diet, that, according to Harvard research associate Ramzi Amri, “eventually led to an unnecessarily early death,” he was quoted as saying in the Daily Mail. Though Mr. Jobs did eventually pursue conventional medical treatment, including surgery, he died in October 2011 due to a relapse of his condition.

Due to its rarity and complexity, I would suggest your Godfather obtain an opinion from a cancer centre that has extensive expertise in the treatment of these tumours. That does not mean he has to leave his community oncologist – only that he obtains a treatment plan from an experienced cancer centre that can likely coordinate his treatment and ensure the best possible outcome. In short, there is nothing to lose and everything to gain from an extra set of expert eyes.

“For patients outside of Toronto, this one visit can allow us to create a personalized plan that the patient can share with their oncologist,” said Calvin Law, head of the cancer surgery program at Sunnybrook, who has operated on many patients with neuroendocrine cancer. “Some can receive therapy closer to home.”

Your Godfather may or may not need more treatment. His treatment plan will involve a detailed analysis of the pathology of the tumour, specifically reviewing the type, size, grade, plus any additional complications. They may want to do an octreotide scan, which allows doctors to see inside the body to locate the tumour and determine if it has spread elsewhere in the body. As well, doctors would likely do a pathological test called Ki-67, which if high, suggests the cancer is aggressive. Depending on other features, your Godfather may require more surgery.

The post Diagnosed with a Rare Cancer, a Patient Needs a Plan appeared first on Your Health Matters.

The cancer cookbook includes a variety of recipes for different skill levels, energy levels and appetites.

Jean went from an active young woman with a healthy appetite to not being able to look at food, even on the television. During one week in hospital, she dropped 10 pounds. Sick, weak and worried, it was her oncologist, Dr. Neil Berinstein, who offered her some comfort, telling her just to drink what she could. She did, and never forgot what a relief it was to be given some reliable nutritional guidance when she needed it most.

Now, years later, Jean has consulted with Dr. Berinstein to write the book she wished she’d had access to as a cancer patient. The Essential Cancer Treatment Nutrition Guide & Cookbook is research-based, and offers everything from tips on managing side effects of treatment to 150 recipe options suitable for various stages in the cancer journey. If you want to get the most nutritional punch out of every meal, this is the book for you.

The Melon Mint Frosty is a great example. Perfect to combat dehydration, nausea, dry mouth and low appetite, Jean whipped it up quickly when I met her for filming a few weeks ago. As she got ready to serve it, she said not to forget about the importance of presentation and portion size. Jean divided her creation between a beautiful wine glass, a regular drinking glass, a covered cup with a straw and a shot glass. Her message seemed to permeate back to that moment with Dr. Berinstein: drink what you can, however you can. It was delicious.

The book is available online through most major bookstores, and also at the Patient and Family Nutrition Resource Centre (TG 261) at the Odette Cancer Centre.

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