Is extending life by weeks worth the toll some cancer drugs take?

— Doctors push for ‘common-sense oncology’

When a treatment buys a few weeks or months but comes with with a lot of side-effects, then the perspectives of people with cancer may differ, says Dr. Christopher Booth.

People may celebrate a 2-week improvement in survival without acknowledging costs

By Amina Zafar, Christine Birak

Tom Somerville’s decision to stop medical treatment for his end-stage cancer was a personal one.

Somerville, 62, was diagnosed with colon cancer in 2021 that later spread to his liver. He had six months of chemotherapy to slow down the cancer, which he said also left him exhausted with nausea.

The Kingston, Ont., resident decided to take a break from treatment to enjoy a trip with his wife to Victoria.

“Things that you cherish change, right?” Somerville said. “I used to love being out in the bush, but now it is just nice to have a sunny day, sit with my family [and] have visitors.”

Somerville said he came to terms with his prognosis and decided to enjoy the rest of the life he has left, extending the chemo break to a full stop. He said he was relieved to not “feel crappy” from the treatment anymore.

A man stands with a woman holding an umbrella while on vacation in B.C.
Tom Somerville, left, and his wife, Katherine Somerville, enjoyed a vacation in Victoria while he paused cancer treatments.

Dr. Christopher Booth, Somerville’s medical oncologist at Kingston General Hospital, supports him in his decision.

Booth is also part of a group of cancer doctors in Canada and the U.S. who say medications with marginal benefits are overused for patients in the end stage of the disease. The oncologists have started a campaign through their website, journal articles and podcasts encouraging honest conversations about use of the drugs with cancer patients, their families and experts.

The goal of what they call “common-sense oncology” is to prioritize treatments that meaningfully improve survival and quality of life. They aim to address what they see as problems in the field, such as a lack of critical thinking in oncology training, falling standards for drug approvals and avoidance of end-of-life discussions.

Balancing hope and reality

Booth said while there have been incredible advances in cancer treatments in his 20 years of practice, there’s also an unfortunate reality: cancer can’t always be cured. He strives to convey it in a compassionate and clear way.

“Balancing … providing information but also providing hope, that’s the art of cancer care,” Booth said. “Balancing hope and reality, balancing treatment and quality of life and side-effects, that’s the tough part of this job.”

Booth said he thinks everyone would agree that a treatment that helps a patient live for extra months or years is very helpful. But when a treatment buys weeks with a lot of side-effects, then patient perspectives may differ.

In part that’s because the cancer drugs that can shrink tumours alsocome with side-effects, including fatigue, vomiting and hair loss.

A woman with long hair, seated wearing a black top and black glasses.
Not having treatment for cancer isn’t giving up, says Rachel Koven of Kingston, Ont.

Dr. Bishal Gyawali, a medical oncologist and associate professor at Queen’s University in Kingston, was motivated to press for changes when he noticed increased spending on treatments that don’t make much difference in patients’ lives while at the same time agencies didn’t put resources to what’s already been proven to work.

Gyawali previously treated people with cancer in Nepal, Japan, and the U.S. and saw the same trends there.

When attending oncology conferences, Gyawali said presenters would celebrate a two-week improvement in survival from a new treatment. Then, behind closed doors, other delegates would talk about the risks and costs of the drug.

“People are saying is this really meaningful?”

Gyawali aims to normalize asking such questions.

Quality of life and quantity

Rachel Koven’s husband, Ken Koven, was diagnosed in his late 40s with adenocarcinoma, which starts in gland cells of the esophagus tube. His cancer was found where the esophagus meets the stomach.

The father and avid runner treated having cancer like a battle, his wife said. He had nine months of palliative chemotherapy that’s given to relieve the symptoms of cancer and improve quality of life, but not meant to cure the malignancy.

The cancer spread. He then underwent radiation to the brain in Kingston, Ont. In 2016, about 16 months after the diagnosis, he died at age 49.

“For my husband, his hope was anchored in treatment,” Koven said. “However well-rounded the discussions we had, he would have always chosen treatment, and I can’t begrudge him for that because that is where he believed his strength was.”

Now, Koven feels families should ask more questions of doctors, such as:

  • How much time does this treatment offer?
  • What are the real costs and benefits of the treatment?

Koven said not having treatment is sometimes seen as throwing in the towel, but that can be misleading.

A man stands wearing glasses, a striped shirt, suit jacket and conference lanyard in front of a blue backdrop reading American Society of Clinical Oncology.
Dr. Bishal Gyawali wants people to ask whether a two-week improvement in survival is meaningful.

“Not having treatment isn’t giving up,” Koven said. “Sometimes by having treatment you are giving up. You are giving up time with your family. You are giving up a quality of life necessarily for something you are not trading off any extra days.”

Koven wrote an essay in 2018 on her experience as her husband’s caregiver in the Canadian Medical Association Journal. At the time, she was motivated “to contribute to the best possible life in the face of death.”

Now Koven advocates for the oncology field to “recalibrate” toward an emphasis on what brings the person joy rather than only focusing on treating their cancer. Finding novel treatments that will really benefit patients is also important to her.

Seek meaningful answers

Dr. Elizabeth Eisenhauer ran more than 170 cancer drug trials in Canada, the U.S. and Europe. Now retired, Eisenhauer won the 2021 Canada Gairdner Wightman Award for investigating new cancer drugs and delivery approaches, including for Taxol, an anti-cancer treatment.

“It’s a good thing we are having so much interest in finding novel therapeutics for cancer,” Eisenhauer said. “But my goodness, let’s find the answers that matter to patients, too.”

Eisenhauer recalled how in the 1980s, scientists set an arbitrary number as a standard, worldwide indicator of safe tumour shrinkage for early clinical trial research.

After that, measuring whether a tumour grew by 20 per cent on a CT scan, the definition of progression, became an endpoint, or goal, for pharmaceutical companies running randomized trials, Eisenhauer said. Randomized trials are meant to guide whether a drug should be used as a standard of care by physicians.

“You have an answer sooner [using tumour shrinkage], but is it an answer that is meaningful?” she said.

Eisenhauer would like to see cancer clinical trials include more criteria.

“I think common-sense oncology from my perspective as a trialist needs to come from the perspective of trying to be sure that the trials that we design at least can capture the information that will be of importance to those discussions with the patient sitting in front of you.”

Eisenhauer said there aren’t a huge number of game changers in oncology every year, but many are available in Canada. She said costs to patients in terms of side-effects and time coming to the clinic also need to be considered.

A patient receives chemotherapy treatment for breast cancer in France.
Randomized trials are meant to guide whether a physician should use a chemotherapy agent as a standard of care.

Despite that, other Canadian researchers looking last year at use of treatments like chemotherapy or major surgery among more than 151,000 people who died found that a treatment was commonly given — in 41 per cent of cases — in the last 30 days of life but was potentially inappropriate.

So far, Gyawali said the common-sense oncology movement is gaining momentum worldwide and he’s received positive feedback from regulators, physicians, patients and payers.

Tom and Katherine Somerville now take time every day to enjoy moments together, like walking down to the pond near their farmhouse, going for a drive on a sunny day or listening to old tunes.

For them, quality of life includes loving glances.

“You appreciate that moment and you want to take it all in and those are the simple things that really are not so simple,” Katherine said. “They’re the important things.”

How to Plan for the End of Life With Cancer

— Reflect on your wishes ahead of time to help ensure they will be followed.

By Susan Kreimer

No one can predict exactly how long you will live with cancer, whether you have metastatic stage 4 disease (cancer that has spread to distant organs) or a less advanced stage. No matter where you are in your cancer treatment, end-of-life planning can ease some of the burden on you and your loved ones. If you take time now to reflect on your wishes, you can increase the chances you’ll achieve the outcomes you want.

Soon after any cancer diagnosis is a good time to consider end-of-life planning. Your doctor can answer questions about your prognosis, including what the realistic options are and what those treatments can achieve, says Steven Pantilat, MD, the chief of the division of palliative medicine at the University of California in San Francisco.

Laura Shoemaker, DO, the chair of palliative and supportive care at Cleveland Clinic, adds, “Care planning, ideally, is about planning for the entire trajectory of the illness, including but not limited to end of life.”

This can be done at any time and should be tailored to your needs.

Reflect on Your Values, Priorities, and Wishes

This reflection process can be difficult to initiate, but will be well worth it. It should include talking with your family, caretakers, or even a counselor.

“Each person’s plan will be a reflection of their lives, values, and personal priorities,” says Kate Mahan, LCSW, an oncology social work counselor in the Canopy Cancer Survivorship Center at Memorial Hermann the Woodlands Medical Center in Houston.

“It is often helpful to think of this as a series of discussions instead of a single talk,” she adds. “While we all know that no one lives forever, it is often very challenging to consider our own mortality.”

End-of-life planning allows your healthcare team to understand what matters most to you, says Mohana Karlekar, MD, the section chief of palliative care at Vanderbilt University Medical Center in Nashville, Tennessee.

It’s important to think about expressing your end-of-life wishes in writing if your cancer has progressed, or you’re experiencing more complications from your treatments.

This may be the time to ask yourself where you would prefer to spend your final days — for instance, at home or in a hospice house, says Eric Redard, a chaplain and the director of supportive care at High Pointe House, part of the Tufts Medicine Care at Home network, in Haverhill, Massachusetts.

Do you want to accomplish anything special? Is there a meaningful place for you to visit while you’re still mobile? “The list is endless,” says Redard.

Appoint a Decision-Maker

By communicating openly with your healthcare team, you can make more informed choices about the medical care you want if the time comes when doctors and family members have to make decisions on your behalf.

One of the most important end-of-life decisions for any person with a cancer diagnosis involves selecting someone who will be a voice for you when you can’t speak for yourself.

“Ask yourself, who would I want to make decisions for me? Anyone with cancer could — and should — do that,” says Dr. Pantilat.

Your choice can be enforced through a durable power of attorney for healthcare. It’s a type of advance directive, sometimes called a “living will.” This document names your healthcare proxy, the person who will make health-related decisions for you if you can’t communicate them to your providers.

Write Advance Directives

Outline your wishes in advance directives. The following are decisions you may want to consider including in these documents, says Redard. 

  • Tube feeding Nutrients and fluids are provided through an IV or via a tube in the stomach. You can choose if, when, and for how long you would like to be nourished this way.
  • Pain management It’s helpful for advance directives to include how you want the healthcare team to manage your pain. You can request as much pain-numbing medicine as possible, even if it makes you fall asleep, or just enough to reduce pain while allowing you to remain aware of the people around you.
  • Resuscitation and intubation You may decide that a do-not-resuscitate (DNR) order is right for you. This is a medical order written by a doctor that informs healthcare providers not to perform cardiopulmonary resuscitation (CPR) if your heart stops beating. Similarly, a do-not-intubate (DNI) order tells the healthcare team that you don’t want to be put on a ventilator if your breathing stops.
  • Organ and tissue donations You may want to specify that you want to donate your organs, tissues, or both for transplantation. You may be kept on life-sustaining treatment temporarily while they’re removed for donation. To avoid any confusion, consider stating in your advance directive that you are aware of the need for this temporary intervention.
  • Visitors You may wish to make it known in advance who will be able to see you and when. This may include a visit from a religious leader. For some people, such a visit can provide a sense of peace.

Even if you write advance directives, it’s a good idea to discuss them with everyone involved in your care. “There is no substitute for meaningful conversations with loved ones and medical providers about one’s care goals and preferences,” says Dr. Shoemaker.

The advance directives can also specify if you would like to receive palliative care.

Choose Palliative Care

“Palliative care provides symptom control and supportive care along the entire disease continuum, from diagnosis of advanced cancer until the end of life,” says David Hui, MD, the director of supportive and palliative care research at MD Anderson Cancer Center in Houston.

It treats a range of symptoms and stress issues such as pain, fatigue, anxiety, depression, nausea, loss of appetite, and nutrition. 

“We generally advise that patients with advanced cancer gain access to specialist palliative care in a timely manner to help them with their symptom management, quality of life, and decision-making early in the illness trajectory,” says Dr. Hui.

The goal of this approach is to provide an extra layer of support not only for the patient but for loved ones as well, especially family caregivers, according to the Center to Advance Palliative Care. It is appropriate at any age and at any stage of a serious illness, and you can receive it along with curative treatment.

Consider Hospice Care

Hospice care is one branch of palliative care. It delivers medical care for people who are expected to live for six months or less, according to the Hospice Foundation of America.

You may decide to consider hospice when there is a major decline in your physical or mental status, or both, despite medical treatment. Symptoms may include increased pain, significant weight loss, extreme fatigue, shortness of breath, or weakness.

Hospice can help you live with greater comfort if you decide to stop aggressive treatments that may have weakened you physically without curing your cancer or preventing it from spreading. Hospice care does not provide curative therapies or medical intervention that is intended to extend life.

A hospice care team often includes professionals from different disciplines, such as a doctor, nurse, social worker, chaplain, and home health aide. This team can guide you in managing your physical, psychosocial, and spiritual needs. They also support family members and other close unpaid caregivers.

Find Comfort at the End of Life

Finally, remember that end-of-life planning isn’t solely about medical care. It’s also a time when you will need emotional support. So, consider mending broken relationships, surrounding yourself with pictures of family and friends, and playing music that soothes your soul.

“People can write letters to loved ones, forgiving them or reconciling,” Redard says.

End-of-life planning is a topic people tend to shy away from, but it removes the burden from those left behind. “Once it’s over,” says Redard, “there’s relief.”

Complete Article HERE!

What should I know about dying with cancer?

From what to ask your doctor to the key considerations around dying at home, award-winning oncologist and author Dr Ranjana Srivastava offers her advice for patients, friends and family on navigating the last days of cancer

[F]or all the world’s teachings on death and dying, the patient who doesn’t lament it for one reason or another is rare. Some people are unprepared to die. Others are worried about those left behind. Some are angry. Many are frightened. Not everyone is hungry for more life, but almost everyone at some point feels apprehensive about letting go. If you or someone you love is struggling with these issues, here are some tips to navigate the future.

Talk to your oncologist
Studies show that, when it comes to prognosis, oncologists and patients often have different interpretations of the information shared. One found that, while oncologists said they had discussed a poor prognosis, many patients felt that they’d not been made aware of it.

Your oncologist should be clear on your prognosis and what that means, but never be afraid to push for more information – it is both appropriate and valuable to ask your oncologist about what to expect. A lack of awareness or understanding of your prognosis could have major implications for acceptance and planning for the end of life.

In terms of details, dividing life expectancy into broad groups of days, weeks, months or years seems helpful for many people. Asking your doctor to describe what decline may look like can also be helpful, as can ­­getting an understanding of how people die from cancer, medically speaking – a question I’ve tackled here. If you are not sure how or what to ask, get help from your family doctor or palliative care nurse, who can help you write out some questions to take to your next appointment.

Talk to each other
While it can be heart-wrenchingly difficult to talk about the finality of dying, patients and relatives say that even one discussion around an incurable situation can be helpful. Acknowledging mortality allows doctors and families to ask the patient, directly, what they want. This kind of honesty can infuse purpose to a time of challenge by allowing the patient to openly express love, regret and desires, and the family to fulfil the patient’s wishes – whether it’s for their final days or after death.

Martin Ledwick, head information nurse at Cancer Research UK, adds that friends and relatives should leave space for their loved one to express what they need at this time:

“Take their lead about how they want you to support and care for them,” he says. “Sometimes they may want the opportunity to talk about deeper feelings, but at other times they may want to feel ‘normal’ and do some of the things they would normally do in your company. It is good to have the opportunity to be able to tell each other how you are feeling and express love, but sometimes it’s useful to be distracted from this.”

Live well before you die well
Being adequately informed about prognosis allows you control over your life. A patient who has had multiple lines of chemotherapy may be offered yet another treatment, but if they have a realistic understanding of its effectiveness, they may choose to stop treatment and focus on “quality of life” – enjoying cherished experiences: spending time with family, enjoying favourite foods or sitting in a favourite environment. Patients who accept the inevitability of death can make every day count, ultimately improving their own experience and leaving their loved ones in a better place.

Of course, as well as fulfilling any desires, many patients and their families feel grateful for some warning – allowing them to arrange finances, child provisions or decide to, for instance, move a wedding, take a holiday, or downsize a house. Key things to consider are your will, which should be written or updated as soon as possible, your finances (including any benefits you or your carers could be eligible for) and your funeral – which you may want to have input into.

Considering where to die
Most patients hope to die at home, but the truth is that with an ageing population, far-flung relatives and busy households unequipped to manage the round-the-clock needs of a dying patient, it may not be possible. Where it exists, inpatient hospice can be a relief. With a more peaceful environment and interventions aimed at comfort care, it can allow loved ones to focus on providing emotional support, with counsellors and social workers also on hand.

Going home works if there is strong community support and at least a few committed people in place. Caregiving is physically and financially demanding, and can be lonely. Many caregivers are surprised to find that visiting services only come by for short stints; the rest of the time they are on their own. Nonetheless, people experience pride and satisfaction in having nursed a loved one in familiar surroundings – there is something deeply meaningful about this kind of service. Wherever someone dies, it is important to avoid guilt and accept that there are many ways of cherishing a loved one.

If you are considering dying at home – or caring for a friend or family member – seek sound advice about the logistics of end-of-life care in a variety of settings; palliative care teams, occupational therapists, physiotherapists and social workers are expert advisers on feasibility.

“Find out what care is available for you by asking your hospital specialist or GP,” says Ledwick. “And make sure they’ve referred you to the community palliative care team, or one linked to your local hospice. Ask them if any equipment can be provided – such as special pressure-relieving mattresses or beds, or a commode if it’s difficult for you to get to the bathroom – and you might want to consider bringing a bed downstairs.”

If you think the situation is tenable, the next thing to do is finalise your support system. “If you can,” Ledwick says, “organise your friends and relatives in advance, perhaps working out a rota of who is available to give help when. And finally, talk to your local hospice to see if a temporary stay from time to time (respite care), to give your carers a break, is an option.”

You’ll also all need to be armed for the final days – managing physical changes, new symptoms and changes to eating and drinking, which your palliative team should help you understand.

Grieve in your own way
On a recent visit, an elderly patient described the aftermath of his wife’s death. “It’s like there is a ‘use by’ date to my grief. One month was OK, two months was getting long. By six months, my children wanted me on antidepressants. They couldn’t understand that after 50 years together, I feel like I have lost a part of my body. The sensation hits me suddenly and I become sad. But I don’t mind it – the sadness feels right.”

This man was not depressed. In fact, he was doing a remarkable job of coping. It’s the modern world that has lost patience with grief. Grief makes people uncomfortable; it prompts self-examination. But there is no one way to grieve, neither is there a time limit. Grief can come in waves and pounce on you at any time or occasion. Give yourself permission to be sad.

Ledwick agrees: “Relatives and friends need to be patient with grief and allow people to do it in their own way. It is natural for loved ones to want to make things OK – they can feel helpless – but it is important not to underestimate the power of listening to someone and to resist the urge to change the subject or try to cheer them up. This makes people feel like no one is listening to them or understanding how hard it is.”

Friends and relatives can be very helpful in recalling a deceased relative with affection, but if the sadness impacts your life and your ability to carry out day-to-day activities, it’s important to get professional help. “If depression persists or becomes a long-term problem, then grief counselling can be helpful,” Ledwick advises. “The local hospice, your GP or the hospital may be able to put you in touch with grief counselling services or contact organisations like Cruse bereavement care.”

It’s important to have someone to talk to, and speaking to a professional to understand your emotions and coping skills can be extremely useful in providing a template for the rest of your life.

Complete Article HERE!

Palliative Care: To Live ‘The Best That You Can’

Wendy Van de Bogart of Canton had a variety of palliative care when she was treated for cancer, but it wasn’t called that, and if it had been she would have been worried. Many people confuse palliative care with end-of-life hospice care.

By THERESA SULLIVAN BARGER

[W]hen Wendy Van de Bogart was diagnosed with stage 3, HER-2 positive breast cancer, she asked her oncologist whether her treatment plan was to get rid of the cancer or just make her comfortable.

“We’re not treating this palliatively,” she remembers him saying. “It’s just to kill the cancer. We’re giving you everything to fight it with everything we’ve got.”

But while she received chemotherapy, a mastectomy, radiation and preventative medications, she also received palliative care. She just didn’t realize it because nobody used the term.

“It’s probably a good thing, because I would have thought I was on my way out the door,” says the Canton mother of three.

Some of the palliative or supportive care was provided through her cancer treatment providers, the Center for Cancer Care at Charlotte Hungerford Hospital in Torrington and at Yale New Haven Health’s Smilow Cancer Hospital, and some she found on her own, with mixed results.

Following her surgery, her clinical team connected her with a physical therapist to help her get her range of motion back and help with some swelling (lymphodema). She sought out a dietician friend, herself a cancer survivor, for nutritional advice. She saw a therapist to help her deal with the stress, a naturopathic physician for vitamins and a hypnotist someone recommended.

Van de Bogart’s experience is fairly typical. The medical community, cancer patients and their families routinely equate palliative care with hospice care. They’re not synonymous. While both are designed to provide support and symptom management to people with a serious illness, hospice is intended for people whose physicians have determined they have six months or less to live and who are no longer actively fighting the disease.

“They view us as the death squad,” says Dr. Henry Schneiderman, palliative care physician with St. Francis Hospital and Medical Center in Hartford. “The conflation of hospice and palliative care is 103 percent of the general population and 100 percent with health care.”

Palliative Care Vs. Hospice

All of hospice is palliative care, but not all palliative care is hospice, says Colleen Mulkerin, director, palliative care, social work and spiritual care at Hartford Hospital. Palliative care, and the medical sub-specialty, palliative medicine, is specialized medical care for people living with any serious illness, including cancer, heart disease, stroke, Alzheimer’s, Parkinson’s, kidney disease and diabetes, according to the Center to Advance Palliative Care. It focuses on providing relief from the symptoms and stress of living with a serious illness with the goal of improving both the patient’s and family’s quality of life.

“The exciting thing about palliative care — you don’t have to accept anything or give anything up,” Mulkerin says.

Palliative care recognizes that there’s a person and a family invested in the treatment of the illness, she says. While the oncology team’s focus is on battling the cancer, the palliative care team is providing the support that the person and caregivers need from the time patients receive their diagnosis, through treatment and follow up care.

“We often get asked to assist patients and families with clarifying their goals. That can include advance care planning and symptom management,” says Dr. Laura Morrison, an attending physician at Smilow Cancer Hospital who is Yale New Haven Hospital’s director of palliative medicine education. “It’s really not at all about dying. It’s really about living the best that you can.”

While palliative care doctors may prescribe medications to help with pain, nausea and depression, the other forms of palliative care include therapeutic massage, cognitive behavioral therapy, acupuncture, reiki, pet, art or music therapy, help with finding financial support and guidance on writing advance directives, which spell out the patient’s wishes for end-of-life medical interventions. Some cancer centers offer massage and mental health support to the patients’ caregivers, since lessening their stress helps everyone.

Studies Reveal Benefits

Multiple studies show that patients who receive palliative care live longer with a better quality of life. A study reported in the New England Journal of Medicine in 2010 concluded that people with metastatic lung cancer who received early palliative care had less depression, improved quality of life and survived 2.7 months longer than those who did not receive palliative care.

According to an Institute of Medicine study published in 2014 in the Journal of Palliative Medicine, palliative care results in “a better patient experience with improved communication and less distress; better quality of care with less aggressive end-of-life care and more use of home and hospice care when appropriate; equal or even better survival; and significant cost savings,” of an average of $2,700 per person.

“When symptoms are better controlled, when patients are coping better emotionally and when people are able to make sure their treatment aligns with their goals, we know from the literature that people do better and so do their family members,” Morrison says.

Why The Misconception?

Palliative care remains misunderstood, advocates say, because it’s a fairly new specialty, and the holistic approach to patient care has been foreign to Western medicine’s more recent focus on medical specialties.

“So often, in Western medicine, we’re asked to give all control up to our medical team,” says Dr. Kathleen Mueller, medical director at the Center for Integrative Medicine at St. Francis Hospital and Medical Center in Hartford. “I think what we’ve lost is what we can do ourselves. What we can do is work on food, movement, relationships and stress reduction. If you can make yourself more whole going into chemo, you’re going to come out better on the other end.”

While cancer treatment facilities’ palliative care services differ somewhat in how they’re staffed and the support that’s offered, most patients are referred to palliative care by their doctors or nurses. Patients are told they can ask for support, but most don’t ask.

“I think it’s really hard to mobilize the resources if you’re not referred. You’d have to have a really skilled patient or family member,” Mueller says. “I do as many lectures as I possibly can to physicians and nurses to let them know this is available, and still I will have someone say, ‘Why didn’t I know you were here 10 years ago?'”

Even in the medical field, palliative and hospice care are linked, so many oncologists incorrectly view palliative care as end-of-life care, says Morrison. Some providers are moving toward calling it “supportive care,” she says.

MD Anderson Cancer Center in Texas conducted a study that found clinicians referred patients to palliative care sooner and were less distressed about it when it was called “supportive” rather than “palliative” care.

Most subspecialists who treat serious illnesses, Schneiderman says, operate in warrior-mode doing battle against disease; some see a referral to palliative care as a defeat.

As a result, “palliative care is brought in too late. Hospice is brought in too late,” he said. “It’s always too soon until it’s too late.”

UConn Health provides palliative care, but calls it “support care” on the “Patient Resource Center” pages of its website.

“I did some research and found cancer centers, [including MD Anderson,] were moving more towards ‘supportive care,'” says Sarah Loschiavo, a nurse practitioner who serves as the gatekeeper to supportive services offered to cancer patients. “We decided that [patients] would feel more comfortable with ‘supportive care.'”

Financial Burdens

Living with the uncertainty of breast cancer is challenging for patients and their loved ones, and the added financial burden of copayments and missed work magnifies the stress.

Van de Bogart was receiving chemotherapy in the winter, which is always a challenging time for her family financially because her husband’s business is slowest during the winter months.

One day, when she was receiving an infusion, the social worker stopped by and sat with each patient, asking if there were any issues she could help with. Although Van de Bogart had rated financial concerns as only 1 out of a possible 10 on a questionnaire about sources of stress, the social worker asked her about it. She admitted that the cancer added further strain to the family’s budget.

“She ended up getting some grants from some local cancer funds,” Van de Bogart says. The social worker filled out the application forms for her, and got the family some grocery store gift cards.

“That was really helpful,” she says. “I didn’t seek her out.”

Complete Article HERE!

I am sorry I didn’t beat cancer

By Uzma

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Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn’t beat cancer.

Every one said, “You are going to beat it”, some said, “If anyone can, you can!!”. They cheered me on as I endured one treatment after another and I kept fighting “like a girl”. I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, “beating cancer”. Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer”. Except for one open book exam, I have hardly failed at something in life. So why not this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, it felt like a failure as if I let down every one who thought I would “knock the shit out of cancer”. I was no longer the example of how stage 3 can be a success story and inspiration.  As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

Statistics indicate that 30 percent of those are diagnosed with early stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.

The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer”, the terms preferred by metastatic community since we ultimately end up not surviving the disease.

When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.

Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometime I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone  diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.

Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.

I often wondered what people think when they look at me and if and how sorry they feel for me. I imagine something to the effect of … “Oh this poor young woman with young children who has this illness that has no cure”.

Me and my metastatic cancer.

I remembered when I was newly diagnosed, the word “metastasis” used to send chills up my spine. I used to dread my facebook feed on Mondays, which are  #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.

One of my stage 4 friends has lived on with bone metastasis for 11 years, she gave me hope but I still would at times try and block her out of my mind, for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.

I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep and all the medications and treatments, I did all possible to lower the chance of cancer taking root within me again.

But as time went on, I also worked hard on accepting what having had cancer meant. It meant accepting life that you have no control over…Life which transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancers, kick each day in the butt and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis )happens I will be ok” . I celebrated every clean scan and a good oncologist visit but the fear of metastasis lingered.

And then it happened. I got another, “I am so sorry “ call from my doctor and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer.  I was not longer a “success story”.

During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.

It said,

“Until I “met” you, I could not think of stage 4.

I’d panic, hyperventilate

Start to decompensate.

Then I met you.

You are showing me, with grace, passion and humor how this can be done.

You are something of a role model to me.

Doing this stage 4 before I do, if I do.

I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.

If I ever get metastasis, I will have someone to emulate….and I will think of you the whole time.

Forgive me if this bugs you or hurts you? I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”

And then I realized I really don’t need to “beat cancer”; I have to however beat life at its game, one day at a time.

I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life and showing others how to reconcile with stage 4 breast cancer.

Complete Article HERE!

For Cancer-Detecting Canines, The Nose Knows

A new clinical trial is set to begin in the United Kingdom using the powerful noses of dogs to detect prostate cancer in humans.

Dr. Claire Guest
Dr. Claire Guest, co-founder of Medical Detection Dogs, says one of her dogs sniffed out her own breast cancer.

While research has been done before, these are the first trials approved by Britain’s National Health Service.

The trials, at the Milton Keynes University Hospital in Buckinghamshire, will use animals from a nonprofit organization called Medical Detection Dogs, co-founded in 2008 by behavioral psychologist Claire Guest.

“What we’ve now discovered is that lots of diseases and conditions — and cancer included — that they actually have different volatile organic compounds, these smelly compounds, that are associated with them,” Guest tells NPR’s Rachel Martin. “And dogs can smell them.”

The dogs offer an inexpensive, noninvasive method to accompany the existing blood tests for prostate cancer, which detect prostate-specific antigen, or PSA, Guest says.

“It’s a low false-negative but a very high false-positive, meaning that 3 out of 4 men that have a raised PSA haven’t got cancer,” she explains. “So the physician has a very difficult decision to make: Which of the four men does he biopsy? What we want to do is provide an additional test — not a test that stands alone but an additional test that runs alongside the current testing, which a physician can use as part of that patient’s picture.”

The samples come to the dogs — the dogs never go to the patient. At the moment, our dogs would be screening about between a 0.5- to 1-ml drop of urine [or 1/5 to 1/10 teaspoon], so a very small amount. In the early days, of course, we know whether the samples have come from a patient with cancer or if the patient has another disease or condition, or is in fact healthy.

They come to the dogs at our training facility. They’re put into a carousel, and the dogs go around smelling samples. If they come across a sample that has a cancer smell, they’ll stop and stare at the sample and wait. They won’t move on.

On dogs’ sense of smell

Dogs, as we know, have got this fantastic sense of smell. They’ve got 300 million sense receptors in their nose — us humans have a sort of poor 5 million. So they are fantastic at smelling odors at very, very low levels.

On how a dog detected Guest’s own breast cancer

I had a dog who was — and still is — our most reliable prostate cancer detector dog. She was working on a project with me, but she started for a short time to be a little bit anxious around me, and one day kept jumping and staring at me and nudging into my chest. I found a lump which I hadn’t been aware of.

I sought medical advice. Actually, that particular lump was fine, but I had very, very deep-seated breast cancer. I had surgery and treatment, and I’m glad to say I’m fully recovered.

But it happened at a time when there was a huge amount of skepticism about whether dogs could in fact add anything the future of the diagnosis of cancer. It kept me focused on the fact that I knew that dogs could offer something, if we can diagnose for cancer by screening noninvasively, screening for volatiles. And of course, this could save thousands of lives in the future.

Complete Article HERE!

Holly Returns With Good News

“She stood and faced me, and her hands reached out until they came to rest on my scars. It was like her touch was both fire and ice, but I didn’t pull away. There was no turning back. I was finally doing what I should have done two years ago.”

Do you remember me introducing you to my friend, Holly? She is a 43 year old graphic artist who shares a home with her wife of ten years, Jean, and their teenage daughter Annie. She is also living through breast cancer. She had a double mastectomy three years ago and has been cancer-free since.

Holly has been dealing with some big-time body issues post surgery. The mastectomy scarred her psychologically as well as physically. This has had a tremendous impact on her intimate life with Jean.black:white

In the earlier column I mentioned above, I recounted an meeting she and I had where we tried to come up with a strategy to overcome these emotional and physical obstacles so that she could resume some semblance of intimacy with Jean.

During that meeting I asked Holly if she had ever taken the time to grieve the loss of your breasts. I suggested that she go to Jean and ask her to hold her while she mourned for what is no longer hers?

I recommend that the Holly and Jean begin to explore what is possible in their sex life together now. I suggested they avoid comparing what they are able to do now with how things were in the past. “Keep the exploration simple and open-ended. And I suggested that they avoid creating a goal to be achieved in their exploration. That’s where most people in their situation go wrong.

hollyI gave Holly two exercises: 1) spoon breathing — to rebuilding a sense of confidence about being physically together with Jean again. And 2) guided-hand touch — to help reestablish a threshold for what is possible between she and Jean as they move forward now.

I suggested that she and Jean keep these exercises playful and that she honor her limits. I asked her to get back to me in a few weeks and let me know how things are going.

Two weeks later an ebullient Holly returned to see me.

“I’ve had a great two weeks. No kidding. Jean and I are on cloud nine. It all started when I got home from our last session. No sooner did I get in the door than Jean was at me with her usual twenty questions. ‘How did it go? What did you talk about with Richard? Did you talk about me?’ And so on and so on. She was following me around the house like a puppy.

I was afraid that was gonna happen. On my way home from your office I was trying to work things out in my head — what should I tell Jean? I couldn’t just blurt it all out, all the stuff you and I talked about. Besides, I was afraid that Jean would pitch a fit about me airing our dirty laundry in public. I thought maybe if I told her I have a headache she’d leave me alone and I won’t have to mix it up with her right then and there.

As a matter of fact, I did have a headache, a big one, but it was mostly from all the anticipation. I had so much bottled up inside of me for so long, all that fear and shame, I didn’t know how it was gonna come out or even if it would come out at all. I was so afraid that I would say the wrong thing and make matters worse. I’ve done that more than once in our relationship.

When I got in the house, I headed straight for the bedroom but she cut me off at the kitchen. ‘What’s wrong, babe? Don’t you want to talk about it?’ I was shaking all over. My legs felt like rubber. I began to cry. I kind of fell in a swoon right into Jean’s arms, just like in the movies, except I’m lots bigger than she is so she couldn’t really catch me. I wound up slumped on the floor where my crying became a wail.

‘Jesus, Holly, what is it? Talk to me. Are you sick? Say something, damnit. You’re freakin’ me out.’blanco:negro

It was only then that I realized I hadn’t yet said a word to Jean since I got home. I tried to speak, but nothing came out. I was like a madwoman curled up on the floor rocking back and forth sobbing like a motherless child.

Jean was indeed getting pretty freaked out by this time. She had never seen me like this. She helped me to my feet and we stumbled to the bedroom where we both collapsed on the bed. Mind you, I was still carrying on this whole time.

I started to undress. This generally is a signal for Jean to leave the room, because I haven’t let her see me naked since the surgery. She was afraid to leave me alone in my hysterical condition, but she also didn’t want to embarrass me any further. She got up to go. I could feel her anguish. By now, tears were streaming down her face too. I reached for her hand and pulled her back down to the bed next to me. Still no words.

I began to undo the buttons of my top. My hands were shaking and I was moaning deep inside. I turned away from Jean and undid my bra and let it slip from my shoulders. I had gone this far, now all I had to do is turn and face her. But I couldn’t raise my head. I was frozen in place.

I was never so scared in all my life. Jean stroked my back with her fingers. Her caress was so gentle that it could hardly even be called a touch at all. But for some reason her touch calmed me. I took a couple of deep breaths and stood. Then I slowly turned toward Jean. I brought my hands to my face in shame and began to sob more intensity.

black_and_white_hands_holding_sjpg70She stood and faced me, and her hands reached out until they came to rest on my scars. It was like her hands were both fire and ice, but I didn’t pull away. There was no turning back. I was finally doing what I should have done two years ago.

When I was finally able to speak, the first words out of my mouth were, ‘they’re gone.’ I took Jean in my arms and pulled her close and we kissed like lovers do for the first time in three years.

I was stunned by Holly’s story. Tears welled in my eyes as she recalled her joyous reconnection with her lover. I thought to myself, what a courageous woman!

After my breakthrough with Jean, I noticed that I have a renewed interest in living. I don’t mean just going through the motions. I’ve done too much of that already. I want to live. I want to be present for whatever life holds for me and for as long as it is available to me. It also means being aware of my limits. When I’m tired or in pain I need to acknowledge that and rest. I’m not real good at taking care of myself in this way, but that’s going to improve, so help me.

What a role model Holly is for anyone facing a similar situation, indeed anyone of us. Too bad there isn’t a place out there where people, like Holly, could tell their intimate stories, successes as well as disappointments, and inspire others.