Be Careful What You Wish For: Cancer Is Not a Way Out From Pain

By Cynthia Toussaint, PNN Columnist

When my oncologist recently spewed the worst word I’ve ever heard -- “recurrence” -- everything in my mind sped up and stopped at the same time. I made a brutal fight for my life in 2020 against Triple Negative Breast Cancer, but came up short.   

Now launching my second battle, a misguided myth disheartens me. Many of us with pain say things like, “I wish I’d been lucky and gotten cancer instead, because with cancer you either die or get better.”

WRONG! I now see this thinking as a cop out, a “poor me” pity party and gross disrespect for those who fight for their lives.

Let me break the suspense. If you ever get the Big C, it will not deliver you from your suffering. You won’t be jumping up and down with glee because your pain problems are over. Like the rest of us, you’ll take on the fight of your life and your pain will quickly take a back seat.  

Here’s more upending news about the “deliverance” mythology: With all of cancer’s apparent “perks” (abundant research, unending sympathy, bountiful support, etc.), it’s anything but the ticker-tape parade of arm-locked togetherness. In reality, an aggressive cancer diagnosis is a new brand of isolating, hellish suffering with death as a probable outcome.

Then there’s this: Cancer fetches a morbid world of trespasses. Many project their fears by pummeling us with religious fervor. It’s unsettling to receive pious magazines and missives about the new body I’ll soon have, the one without pain. Friends and people I don’t know remind me of how lucky I am to be nearing death’s door, because the other side will be paradise.

A head’s up! With cancer, even more than being in a wheelchair, one becomes public domain, open to an onslaught of good intentions delivered with a heaping side of judgement.

And there are the bizarre jealousies. I can’t believe I’m writing this. Have you ever noticed that many in the pain world compete? It’s all too often about who’s the sickest, who’s agonizing most. When you go to the front of the line with cancer, people can get cruel because you’re hailed as the winner of the “Can’t Get Worse Than This” award. Well, three cheers for me!

Soul-Sapping Support

Most heartbreaking, just when I thought my support system couldn’t atrophy further, people have scurried. A number of my close friends who stayed through my decades of pain have stunningly distanced themselves or pulled away altogether. Friends that I believed were strong enough to withstand anything, my rocks, crumbled.

And, ah yes, the platitudes. If I hear “You got this” one more time, I may lose whatever I still got. “Good luck” while walking away has become code for “I’m not strong enough for this scene, but I hope you can keep yourself above ground.”

Then there’s the classic, “If you just think positively, everything will be fine.” Far from it. Faking positivity is the most energy-draining, soul-sapping activity known to humankind.   

Have you ever heard the term, “scanxiety”? If not, that’s because you haven’t had cancer with its phobic-driving medical scans that endlessly loom. It may surprise you (it did me!) to learn that cancer falls into the chronic illness category, a potentially terminal co-morbidity. Even if you hit the jackpot of remission, you’re doomed to a life of fearful obsession over the possibility of recurrence. With cancer, I guarantee you’ll never, ever again be gifted a moment of real peace.        

For these reasons, and the many I don’t have room to share, I implore you to stop thinking that cancer is the way out of pain. To the contrary, if you’re ever diagnosed with a life-threatening malignancy, you’ll be praying for the good ol’ days. Just as I do.

Also, it’s an insult. There are many of us, fighting for our lives and weathering horrendous therapies just to have one more shot -- therapies that often leave us with increased life-long pain. So, please check yourself the next time you have the impulse to blithely state how people with cancer are the lucky ones.

I’m ashamed of the things I used to think and say. I was wrong and out of line. I apologize to all, past, present and future, who had, have or will have courage I didn’t honor.

Sorry for the finger-wagging. I know we’re struggling to cope with the day-to-day torture of our pain, along with the dread that our suffering will likely go on till we’re no longer. But desiring worse isn’t the answer. I guess I’ve seen too much now to put up with ignorance and lack of self-worth. Cancer does that to you, especially the second time around.

This boils down to the power of thoughts and words. I believe they have the sway to make us sick or well. Choose them wisely, and be careful what you wish for.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Finding Life in the Midst of ‘The Pain-Cancer Connection’

By Cynthia Toussaint, PNN Columnist

In 2019, when I first heard my worst diagnosis, Triple-Negative Breast Cancer – yes, the rare and aggressive kind – I instinctively knew it was tied to my 37 years of high-impact pain. Indeed, for a couple of decades, I’d commented often to my partner, John, that I didn’t understand how my body could take the toll of never-ending torture without getting terminal cancer.

Like so many of us with pain, my chronic depression kept me wondering if that scenario might be a blessing. In fact, my greatest struggle was endlessly debating whether life with pain was worth living. 

Here’s the stunner! After hearing my grim diagnosis, I ultimately deduced it was. So much so, not only did I choose to fight, I took a deep dive into discovering the best chance at surviving my cancer well with the quality of life I still had intact. In short order, I armored myself with a boatload of education and committed to using integrative care all the way. Making bold, unconventional treatment decisions upped my chances to stay on the planet.

I won’t sugar-coat it; fighting breast cancer while trying to keep 19 overlapping pain and fatigue conditions in check was the hardest thing I ever did, and the jury’s still out as to whether I’ll survive. But I’m damn happy and proud to be here today, and want to share what I’ve learned.

Enter “The Pain-Cancer Connection,” the theme of For Grace’s 2021 Women In Pain Conference on Friday, September 24.

Last year when I sat down via Zoom with my sisters in pain that make up For Grace’s event planning committee, I was in the midst of chemo, bald and very ill. After pitching the theme and telling these badass women about the connection between pain and cancer, I was deeply touched that they wanted to move ahead.

None of these women have had a serious cancer diagnosis, and executing a conference, especially in the midst of COVID, is damn-near impossible work. I love these women! They play a critical part in helping me turn suffering into meaning, my primary life force.

CYNTHIA TOUSSAINT

As some wise woman shared, “All good things come in time.” As such, this virtual conference is a year late due to my rough recovery. That’s another thing about my sisters – they unconditionally supported, even insisted on, my need to take time to ramp up to this frenetic pace.

Well, here we are, and what a first-of-its-kind day we’ve got in store.   

After a warm welcome from our Director, John Garrett, I’ll start by divulging my cautionary tale with cancer treatment. Oh boy, I’ve got a ton to say about western medicine failing miserably at every turn – and how taking control of my cancer care got me this far.

Next up, integrative oncology chaplain Michael Eselun will share a touching, personal story about loss and letting go. Michael is a gem of a storyteller who brings his audience to laughter and tears, whilst stepping into the dark side with ample tenderness.  

Sprinkling in some For Grace vibe, woman in pain and comedian Anna Polack will drop a witty take on the self-help movement. Later, she’ll host interactive “fun breaks” to bring in lightness.

Also, throughout our day, we’ll spotlight woman in pain and artist Radene Marie Cook’s exquisite pieces that depict the pain-cancer experience in endless passion and color.

Then we’ll launch into our four themed sessions: Problem, Solution, Experience and Moving On.

Dr. Wayne Jonas, Executive Director of the Samueli Foundation’s Integrative Health Programs, will present the “Problem” – how the inflammation of pain can lead to cancer and how cancer treatment can spark persistent pain. Dr. Jonas will also delve generously into the benefits of integrative care. His brilliant, positive take on healing is eye-opening, and I’m forever grateful for his steady guidance.

The “Solution” session will kick-off with one of my all-time favorite people, Christin Veasley, co-founder of the Chronic Pain Research Alliance. Simply put, Chris is the best, full of information and care. She’ll explore effective tips about how to become your own best advocate, including how to partner with your practitioner for best outcome.

Next up, one of my heroes, Dr. Keith Block, founder of the Block Center for Integrative Cancer Treatment, will go in-depth about how to keep one’s “terrain” healthy throughout active cancer treatment as well as the all-important post period to avoid a recurrence. Tragically, western medicine doesn’t acknowledge the terrain, but this is the stuff that saved me! In fact, Dr. Block’s book, Life Over Cancer, was my bible during treatment.

Dynamite wellness expert and fellow sister in pain, Dr. Susan Nyanzi, will follow with how common-sense, self-care lifestyle choices can help prevent most cancers. I say, “Amen to that, Dr. Nyanzi!” Just wish I’d heard this talk five years ago.

A dynamic panel of real-life pain and cancer patients will make up our “Experience” session. Moderated by the no-holdin’-back Rhonda Smith, breast cancer survivor and executive director at California Black Health Network, these folks will share, with us and each other, inside advice about getting best care, handling adversity, the importance of self-management, and improbable “gifts” along the way.         

We’ll end with the inspiration to “Move On” despite the challenges of these epic diseases. Yes, it’s all about hope and movement with Dr. Melissa Cady, DO. Also known as “The Challenge Doctor,” this force-of-nature will teach us how to reframe illness and use movement to find joy and less suffering.   

To put a bow on the day, cancer survivor and Bump In the Road podcaster, Pat Wetzel, will share how illness and misfortune drove her to transform her life into one of helping others, traveling the world and prompting folks to hit the road to find wellness and meaning. Seriously, there are no brakes on this full-speed-ahead woman, guaranteed to inspire! 

There’s no denying that cancer and pain are upending, life-altering, sometimes terminal diseases. But as this conference will illuminate, we can fight the good fight with dignity and grace.

Last year, during my darkest hours of chemo and COVID, when I actually forgot why I wanted to live, people from my circle of support bolstered me by phone, email, text and good ol’ snail mail, to keep me keepin’ on. Truly, I don’t know if I would have made it without them.

I want this conference to be that kind of support system for those who are wrangling with pain, cancer or both. I want its shared education to make it possible for one disease not to springboard into another. I want the day to remind us that there’s enough love in this world to make life worth fighting for.

Seeing so many beautiful people come together, volunteering their time to help others avoid my fate, humbles me – and makes my heart swell.    

I look forward to connecting with you on Friday, September 24 at 9am PDT (12pm EDT). You can watch the entire conference for free on our YouTube channel.      

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Scanxiety: My Fear of Cancer Recurrence

By Cynthia Toussaint, PNN Columnist

Several months back, For Grace’s conference planning committee invited our webcaster, Rich, to join the call to talk logistics about our upcoming virtual “Pain-Cancer Connection” event. Rich is a long-time cancer survivor who’s dealt with decades of chronic pain as a result of his aggressive treatment.

It soothed me to talk with him because I was in the midst of brutal chemotherapy. I could relate when Rich shared his nightmare of getting one infusion too many and lying on the floor weeping after losing much of this tongue. I also understood Rich bungie jumping off a Las Vegas building after his treatment in a quest to find something scarier than chemo.

But that ease turned to discomfort when Rich warned me, “Oh Cynthia, you don’t know yet. There’s so much anxiety that comes with cancer.”

While I’ve long been aware that if triple-negative breast cancer returns, it tends to do so more aggressively in the first year or two, Rich was my introduction to “scanxiety.” We cancer survivors live in often paralyzing fear of a recurrence, one that will likely end us. In fact, I was recently stunned to hear a breast cancer survivor speak publicly of her relief when the cancer returned. She preferred to battle the disease again rather than the anxiety.

Now after sweating bullets through my first post-remission imaging, I can’t help but wonder how much scanxiety is reinforced by our broken healthcare system’s reliance on an endless stream of patients whose wellness would pose a threat to their business model.

I’ve said it before and I’ll say it again: the cancer industry thrives on a culture of fear, intentional or not. I’m certain that’s why patients gratefully say “yes” to every treatment offered without blinking. And that’s why I was looked at like I had two heads when I questioned every proposed therapy, relied on my own research, did everything integratively and said “no” to most of my provider’s drugs, scans and (over) treatments.

Sadly, my scanxiety began the moment I attained remission. My oncology surgeon -- who’s still terrified because I didn’t go with her standard-of-care surgery, even though studies support that as a complete responder I had a better chance at surviving without it – told me to do twice weekly breast exams. She then attempted to comfort me by assuring we’d do surgery after the cancer grew back. Those hyper-vigilant exams made me so tender my coordinating nurse told me to back off.

As my initial every-three-month imaging neared, scanxiety reared its ugly head and seriously messed with my health. I stopped sleeping restoratively and was plagued by nightmares. Obsessing on the worst outcome, I started getting severe headaches while my IBS went through the roof.

My terror went into hyper-drive when I found an inflamed lymph node in my neck, the same side as my former tumor. This fright didn’t just infect the patient.  John developed body-wide hives that looked like eczema on steroids, and my close girlfriends felt like they were having nervous breakdowns.

After my breast scan was clean, I rejoiced with John about how we deliberately made all the right choices. My surgeon broke up the party when she entered the examining room voicing her concern about my neck lymph node. Due to its location being a few inches higher than my breast area and healthcare being its dysfunctional self (every department can only scan a small area of the body), I had to wait another WEEK to find out if the cancer had metastasized.

During that soul-rattling scan the imaging technician said the node was abnormal and that I’d hear from my doctor soon. While John wheeled me to the car, I lost my shit and began screaming in the parking garage. I knew “abnormal” meant I was going to die and that six grueling months of chemotherapy hadn’t helped me in the least. How could I have been so wrong?!

I continued screaming in the car until my screamer gave out, while my stomach knotted and head throbbed. Mercifully, my doctor’s call late the next day told me all was clear. That both relieved and angered me; relief because I was assured another three months on the planet, but deeply pissed off because this healthcare-induced trauma was majorly messing with my cancer-fighting terrain. I make it my priority to practice healthy life-style choices to keep my body and mind well and in harmony.

Toxic Medicine

But the body keeps the score. After that last scan, I got a chemo-induced bladder infection from hell, one that’s still knocking me out despite a week on Cipro. With this infection that appears to be moving into my kidneys, multiple chemo side effects have re-roosted; fatigue, heavy heart throbbing, tinnitus and labored breathing. I find myself in the midst of my most recent outcome of fear-based medicine, and I remain snared in their illness-inducing, money making system.    

Deeper reflection leads me to believe that even my “innocuous” port flushes are part of this web of toxic medicine. Every seven weeks (though they push for four), I visit the infusion center where the nurses honestly seem put off, even hostile, that I’m doing well, smiling and in good spirits.

Apparently my role is to be fearful, inferior and vulnerable, and my upbeat, empowered demeanor rattles them. Rather than celebrating winning my life back or chiming in about simple pleasures like fashion and hair color, they drill me about how my post-treatment is going (what post-treatment?!) and what horrors my next scan might bring. My medical oncologist there is so buried in the fear culture, I schedule my appointments to avoid him.

Breathe.

Thankfully, I saw my saint of an integrative doctor last week who set me straight. Dr. Taw was visibly disturbed when I shared my run-ins with these healthcare providers, and was concerned that their behavior might stir things up and create cancer sparking “stagnation” in my body. Several times, he gave me his full support to stay away from these toxic people as much as possible to hold wellness. I couldn’t agree more.

Still, I am wary of my next scan. Despite every logical indicator telling me I’ll likely be A-ok, these people and their diet of fear embed me with dread. I see more than ever that this doesn’t just apply to my last year plus of cancer care; it also applies to my 38-year wrangling with high-impact pain. These western medicine devotees, while they claim to be healers, are the polar opposite for me. And their negative energy creates illness, rather than mitigating it.

Let’s not have to take a bungie jump off a building to overcome our latest medically-induced trauma. I implore you to stay away from these healthcare providers and their dysfunctional, money-based system as much as possible. To be fair, they do some good – but by a long measure, they hurt us beyond repair, again and again.  And again.

Please seek out integrative healing that is non-invasive and wellness (rather than fear) based. Your body and mind will thank you.  

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Patient Advocate Who Drew Attention to Pharmacy Discrimination Dies

By Pat Anson, PNN Editor

A patient advocate in California who fought breast cancer and helped draw attention to the discrimination often faced by pain patients at pharmacies has died. April Doyle passed away last month after a 12-year battle with metastatic breast cancer. She was only 42-years old.    

In April 2019, Doyle posted a tearful video on Facebook and Twitter after a Rite Aid pharmacist refused to fill her prescription for Norco, an opioid medication she took for cancer pain. At the time, her Stage 4 breast cancer had metastasized into her lungs, spine and hip. 

“I have to take 20 pills a day just to stay alive,” Doyle said in the video, which soon went viral. “Every time I take my pain pill prescription there, they give me the runaround. They don’t have enough in stock or they need me to come back tomorrow because they can’t fill it today. Or something stupid. It’s always something and it’s always some stupid excuse.”

Doyle’s video struck a chord with pain patients around the country, who often have trouble getting their opioid prescriptions filled. The publicity also led to apologies from a Rite Aid vice-president, the store manager and the pharmacist who refused to fill her prescription.

Doyle said the pharmacist told her he was worried about being fined or even losing his job if he filled her prescription, even though cancer pain is exempt from opioid prescribing guidelines. 

“It’s astonishing the reaction it has gotten. I had no idea this was so common. It’s actually kind of sad how common it is,” Doyle told PNN at the time. “It really struck a nerve with what’s apparently a big problem.”

Doyle wrote several articles about breast cancer that were posted online and her own blog. In her final post on AdvancedBreastCancer.net, Doyle shared her feelings and worries about her young son while she was sick at home from chemotherapy.

“He’s such an amazing boy and it isn’t fair that he has to grow up with a sick mother. If I’m even around for much more of his growing up. In my heart, I know this is what I’m really mourning,” she wrote.

“Cancer is slowly taking things away from me. I hate, hate, that I can’t do something myself. The stubbornness in me is resisting yet it comes out a waterfall of tears. Something so mediocre or dumb to someone else, but it’s an example of what my life has become and how I no longer can dictate what I can or cannot do.”

“April was a dedicated advocate in the metastatic breast cancer community. She told her story with authenticity and inspired so many young women and men living with the disease. She had a way of bringing people together and supporting people in all stages of breast cancer,” Doyle’s obituary in the Visalia Times said.

“She never let her disease define her. She never backed down from adversity and always stood forefront. April fought the stigma and stood up for patient rights. She leaves a legacy in the breast cancer community that will inspire people forever.”

Doyle leaves behind her 9-year old son, Colin. Her family asks that donations in her honor be made to METAvivor, a non-profit that supports breast cancer research.

Playing With Fire: Should I Have Cancer Surgery?

By Cynthia Toussaint, PNN Columnist

As a woman with high impact pain for 38 years, I was stunned last July to receive a triple-negative breast cancer diagnosis. Seriously, God, how much more can I endure? I felt the tumor for a year before being checked because, with Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities, I didn’t think cancer treatment was an option.

It took me half a year before plunging into the impossible – and I started chemotherapy in January. With triple-negative cancer (the worst prognosis), the only prospect of living includes chemo. If I was responsive to the drugs, I believed I had a shot -- if pain didn’t destroy me first.

I’d done my shopping and found an oncologist willing to follow my integrative doctor’s advice for the best outcome with fewest side-effects. That meant lower and slower dosing, no Neulasta (a wicked drug that keeps your immune cells robust at the cost of intense bone pain), infusion breaks, supplements to ward off neuropathy, and acupuncture before each infusion.

I was also diligent about my healthy, cancer-fighting life style choices – a plant-based diet, daily intensive exercise, regular mindfulness meditation, removal of toxic people and excellent sleep hygiene.   

It worked! My oncologist’s dream goal of 18 infusions is one away from being in the books (most people stop at twelve) and I can’t stop smiling as my follow-up imaging is crystal clear.

Despite every western oncologist chiding me along the way for doing my chemo “less effectively” with complementary integrative therapies, I’ve had a clinical complete response. This is the hope of everyone with triple-negative.

Conversely, the only person I’ve met with this rare sub-set of breast cancer relied solely on western medicine – and her cancer has already metastasized to her brain. 

Hardest Decision

CYNTHIA TOUSSAINT

Now my oncologists insist on doing a “minor” surgery to sample tissue from the “tumor bed” and previously effected lymph nodes. If the tissue confirms a pathological complete response, as everyone expects, I’ll have a 90% plus chance of survival for the next 5-10 years. If they find any leftover cancer cells that will embed and begin to grow, we’ll continue treatment.

I can feel those of you with CRPS grimacing. Yes, of course, I want to avoid surgery at all cost, but this is my life, and the hardest decision I’ve ever had to make.

My track record with CRPS and surgery stinks to high hell. As a young woman, I was given an unnecessary LEEP procedure for cervical dysplasia, which I’ve since learned usually fixes itself. As a result of that minor surgery and cauterization, my CRPS spread, and subsequently I was unable to have a baby – which is one of the great tragedies of my life.

When I was 40, I was diagnosed for the first time with breast cancer and told that without surgery, chemotherapy and radiation, I had just a few months to live. I was terrified, but didn’t trust western medicine anymore.

After researching my diagnosis, ductal carcinoma in situ (DCIS), and learning that these calcifications in the milk duct almost never become invasive, I chose to “watch and wait.” Even when my mom broke down, crying and begging, “Please, Cynthia, I just want them to take the cancer out of you!” -- I didn’t budge for fear of a CRPS blow up. The calcifications never grew and to this day I warn women about the over care of DCIS.

About a decade ago, a physical therapist wanted to try to straighten my CRPS-contracted right arm. The therapy seemed far too risky, and I only relented when she promised to work exclusively on my head, neck and back. But she cheated and yanked, breaking my right arm. I was at a level ten pain again. It took a year to get an x-ray and correct diagnosis because I was labeled a “catastrophizing” patient.

The orthopedic surgeon told me that without elbow surgery I’d never use my right arm again. In the end, I didn’t trust the medical professionals who broke my arm to “fix” it. Instead, I got into my beloved YMCA swimming pool, did mirror therapy and strengthening exercises in the surrounding area – and my arm slowly regained near-full function.

Fortunately, I’ve forever had the gut instinct to pass on multiple recommendations for spinal cord stimulators and intra-thecal pumps, knowing the surgeries would do far more harm than good.

So here I am again, having to decide on surgery or not. But this time the stakes are much higher.

With the exception of one surgeon I know who understands CRPS because he’s triggered it with breast surgeries, every western doctor is consistent. They’re horrified by the prospect of me not doing the standard of care surgery to confirm or rule out a complete response. When the surgeon heard my plight, he responded with, “Cynthia, this surgery could very well destroy your life.” Damn right.

In my research to glean wisdom for this impossible decision, I’ve come upon two recent, small studies. They support the protocol of post-chemo, minimally-invasive biopsy or “watch and wait” as an effective substitute for surgery to confirm a complete response. This may be the future for treating triple-negative cancer. But in 2020, taking this unproven route would leave me with the terrible anxiety of not knowing. Worse yet, I could suffer a quick recurrence.

What fire do I play with this go around? Do I potentially reignite my CRPS or my cancer embers? All I can do is go with my gut and heart, and call in the good karma chips from the universe I’m certainly owed.

Can anyone thread the CRPS-cancer needle? I guess I’m going to find out.                              

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has had Complex Regional Pain Syndrome (CRPS) and 15 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Experts Warn Rx Opioids Being Denied to Breast Cancer Patients

By Pat Anson, PNN Editor

Patients with advanced breast cancer are being denied opioid pain medication due to lack of supply in poor countries and a backlash against opioid addiction in the United States, according to experts at an international conference on breast cancer recently held in Lisbon.

In a session agreeing to new guidelines for treating breast cancer, oncology experts at the Advanced Breast Cancer Fifth International Consensus Conference also called for better access to a group of anti-cancer drugs called CDK4/6 inhibitors. The drugs help breast cancer patients live longer and improve their quality of life, but are often not available.  

The guidelines also warn that cancer patients should not have limits placed on their access to adequate pain control.

“Patients with advanced breast cancer can suffer pain and other symptoms, particularly towards the end of their lives. We need to ensure that appropriate pain medications and other symptom interventions are available to them,” said conference co-chair Eric Winer, MD, Director of Breast Cancer Program at Dana-Farber/Harvard Cancer Center in Boston.

“We acknowledge that the misuse of opioids is a big problem, particularly in the United States, but we need to make sure that in trying to deal with this problem we do not interfere with pain management in cancer patients. In addition, in some low- and middle-income countries, such as some in Africa, there are problems with patients being able to access any form of pain relief, and this needs to be addressed urgently.”

The panel of experts also called for more research into the use of cannabis for managing pain and other symptoms in patients with advanced breast cancer. But they cautioned that cannabis should not replace pain relievers that have been proven to work.

“The panel encourages research on the potential role of cannabis to assist in pain and symptom control but strongly stresses that it cannot replace proven medicines, such as morphine, for adequate pain control,” the guideline state.

Over two million new cases of breast cancer are diagnosed worldwide ever year, and there are about 600,000 deaths annually from the disease.

Confusion Over CDC Guideline

Although the CDC’s 2016 opioid guideline is only intended for primary care physicians treating non-cancer pain, the recommendations include patients “who have completed cancer treatment, are in clinical remission, and are under cancer surveillance only.”  

Experts say the CDC’s inclusion of cancer survivors is a mistake because it is not uncommon for cancer pain to persist long after the cancer is treated.  The CDC’s recommendations also conflict with cancer treatment guidelines that suggest doctors use both short and long-acting opioids when treating flares from cancer pain. The CDC recommends against long-acting opioids because of the potential risk of addiction.

The conflicting recommendations have caused confusion for oncologists and pharmacists, and agony for cancer patients not getting proper pain relief.

Earlier this year, a Rite Aid pharmacist refused to fill an opioid prescription for a California woman with Stage 4 terminal breast cancer.  April Doyle posted a tearful video online about her experience at the pharmacy that went viral. The pharmacist and a Rite Aid manager later apologized to Doyle for the incident.