Choice in Myeloma Care!?!

If there’s choice in myeloma care, I don’t see it. I’m a long-term MM survivor. I communicate with MM patients and survivors frequently through online interactions, mostly. The MMers I communicate with simply talk about what their oncologist told them to do.

MM specialists telling MM patients what to do is fine at the start of treatment. But when it comes to larger issues such as quality of life and/or quantity of life, those same MM specialists should bow to the wishes of the MM patient, not the FDA.

The essay linked below focuses on breast cancer. My thinking is that breast cancer is both more common and can include a host of issues, such as the choice of a mastectomy or not.

When I asked ChatGPT about choice in myeloma care, it spit out what choices the MM patient should have but are overridden by their oncologists.

What are the important choices in their care that myeloma patients must decide rather than their oncologists?

1. Whether to Start Treatment Immediately

Especially relevant for smoldering multiple myeloma or early-stage disease.
Patients must weigh:
- Risk of progression (e.g. high-risk SMM may benefit from early treatment)
- Potential side effects and impact on quality of life
- Desire to delay therapy

2. Type and Intensity of Treatment

Patients may choose between:
- Standard triplet vs. quadruplet regimens
- Transplant-eligible vs. ineligible pathways
- Participation in clinical trials vs. standard-of-care
Decisions are influenced by:
- Willingness to tolerate side effects
- Travel/time burden
- Long-term goals (e.g., pursuing deepest remission vs. minimizing toxicity)

3. Autologous Stem Cell Transplant (ASCT)

Patients often must decide whether to:
- Undergo ASCT early (after induction)
- Delay ASCT (collect and store stem cells for later)
- Forego transplant entirely
This is a personal choice balancing aggressiveness of treatment, age, and potential benefits vs. risks.

4. Maintenance Therapy Decisions

After initial treatment or ASCT, patients may choose:
- Whether to continue maintenance therapy (e.g., Revlimid/lenalidomide)
- How long to stay on maintenance if side effects (e.g., fatigue, cytopenias) are burdensome
- Whether to stop therapy if MRD-negative

5. Clinical Trial Participation

Patients must decide:
- Whether to enroll in experimental therapies
- Accept unknown risks or intensive monitoring
- Contribute to research vs. stick with standard-of-care

6. Complementary and Lifestyle Therapies

Oncologists may not direct:
- Nutritional strategies
- Exercise regimens
- Integrative practices (e.g., acupuncture, meditation)
Patients choose which non-conventional therapies to incorporate for symptom relief, immune support, or personal healing.

7. Advance Care Planning and End-of-Life Preferences

Includes:
- Do Not Resuscitate (DNR) orders
- Hospice vs. aggressive treatment near the end of life
- Palliative care decisions
These are highly individual choices based on personal values and quality-of-life considerations.

8. Financial, Logistical, and Social Tradeoffs

Patients weigh:
- Cost of treatment (even with insurance)
- Time away from work or family
- Travel to specialty centers
- Use of caregiver support or home health

Summary Table

Decision	Who Decides	Key Considerations
Start treatment (e.g., in SMM)	Patient	Risk tolerance, quality of life
Transplant timing or avoidance	Patient	Aggressiveness vs. recovery burden
Join clinical trial	Patient	Innovation vs. uncertainty
Continue maintenance	Patient	Side effects vs. relapse risk
End-of-life care planning	Patient/family	Values, prognosis, comfort
Complementary therapies	Patient	Symptom relief, self-empowerment
Financial/logistical tradeoffs	Patient/family	Affordability, support, feasibility

To be fair to oncology, the issues listed above have to be carefully explained to the MM patient for them to have a chance at making a sound decision for themselves. The typical appointment with your oncologist is often rushed, so there is little time for your oncologist to explain the pros and cons of an autologous stem cell transplant.

But you, the MM patient, will have the best chance at treatment decisions that are best for you, best for your future, if you understand those treatment decisions that directly affect your life as a MM patient.

Email me at David.PeopleBeatingCancer@gmail.com if you have questions about any of the issues listed above.

Good luck,

David Emerson

MM Survivor
MM Cancer Coach
Director PeopleBeatingCancer

The Power of Choice in Cancer Care: Why It Matters

CHICAGO — Erica Neubert Campbell took a deep breath and announced to her colleagues that she would be taking time off for a double mastectomy.

No drama. Nothing too emotional. Just the matter-of-fact announcement she had planned.

Then, a new coworker pulled her aside and said that she, too, had undergone a double mastectomy with reconstruction several years earlier. The coworker leaned in and whispered, “Do you want to see my breasts?”

“Now, I was desperately trying to stay professional,” Campbell recalled.

But yes, she did want to see them, she realized.

Campbell, a memoirist and patient advocate, shared her story during the American Society of Clinical Oncology Voices session at the American Society of Clinical Oncology (ASCO) 2025.

She recalled the cathartic moment when the two women found a private bathroom down the hall and locked the door.

“They looked so real. Her scars were so faint,” Campbell said. “I could hardly believe she’d had a mastectomy, and she gave me hope.

“And then she said something so profound,” Campbell continued. “She said she chose to have her mastectomy, and she was happy about her decision, and it hit me — the power of choice.

“Cancer takes so much…and the thing it threatens the most is your sense of control, and I wasn’t willing to give that up,” Campbell said. “So, in that quiet moment in the bathroom, I decided to stop my pity party and take back my power.”

The Mastectomy She Always Wanted

Perhaps her upcoming mastectomy wasn’t a punishment or something to dread. Perhaps it was a choice she could make to help save her life — not something to be done to her, but for her.

“Maybe I could choose to make this the mastectomy I always wanted,” she thought to herself at the time.

Two decades prior, her mother had made a choice, too. It wasn’t the choice Campbell wanted for her mother, who had been diagnosed with breast cancer and chose lumpectomy over mastectomy. When the cancer relapsed, her mother chose her own trusted doctor over the “world-class cancer center” Campbell said she had in mind.

“I was so mad, and I thought she was giving up,” Campbell said, recalling the resentment she felt after her mom died from the disease. “This haunted me for years.”

Things might be different if only her mother had made the “right” choice, she thought.

Then, many years later, Campbell faced her own breast cancer diagnosis.

“All I could think about was, ‘This is what I feared all along,’” she said. “But that’s how I got the opportunity to make a different choice than my mother.

“It’s how I ended up choosing to make this the mastectomy I always wanted.”

It was the mastectomy she wanted for her mother and the preventive mastectomy she considered — begged for, even — as fear and anxiety overcame her with every mammogram in the years after her mother’s death. A compassionate physician helped her decide to continue annual screening instead. And when the time came, she made her choice.

“But let me be clear: This is my choice, and not the choice,” she stressed. “Because choice looks different on everybody.

“There’s no universal right answer. There’s only your answer and your choice,” she realized.

That realization helped her find peace.

“Ironically, my biggest regret in my life is the one fight I got into with my mom over her treatment,” she explained. “But my mother’s choice wasn’t the wrong choice — it was just her choice. She loved her doctor, she trusted him, and that’s what mattered.”

There is power in choice, Campbell stressed.

“If you are a patient, ask for a choice. If you’re a doctor, offer a choice. If you’re a caregiver, honor the choice,” she said. “Cancer takes away so much, but it cannot take away your ability to choose — and that is how you reclaim your control, your peace, and your power.

A Physician’s Perspective on Patient Choice

For Naga Cheedella, MD, recognizing the value and power in patient choice was practice changing.

Cheedella, who also spoke during the ASCO Voices session, described a 43-year-old patient with stage IV colon cancer who had been doing well. She was responding to chemotherapy and experiencing few side effects.

“She was vibrant and full of life,” recalled Cheedella, a medical hematologist and oncologist, clinical researcher, and author.

Then Cheedella got word that her patient wanted to see her. She was in intensive care, having suffered massive blood loss from a surgical complication.

“My heart sank. I dropped everything and rushed to the unit,” said Cheedella, who is currently an associate professor at Texas Tech University Health Sciences Center, Lubbock, Texas. “She grabbed my hand, looked into my eyes, and said her last words: ‘Thank you.’”

“This was the moment I realized that she was not thanking me for the chemotherapy I gave her or the clinical information I explained or the discussions I had with her in the clinic, but she was thanking me for being there, for spending that moment with her, for seeing her.”

It was a moment that changed her practice forever, Cheedella said.

“It was not what I wanted. It was exactly what she needed, and from that day on, whenever I see a patient on the oncology floor, deliver a new diagnosis, or talk about treatment options, one thing always comes to my mind: ‘What do my patients really want?’” she said.

The ‘Stop. Process. Act.’ Experience

Cheedella developed a new approach for her patient interactions: “Stop. Process. Act.”

“I call it SPA,” she explained. “The most powerful part of any cancer care is simply asking — and listening.”

Stop and listen to your patient, process what they say to help you understand what really matters to them, and then act, she advised.

“Take steps and offer options that align with their values,” she added.

Patient choice based on informed consent and shared decision-making is a cornerstone of oncology care, and research has long demonstrated that patient engagement in the decision-making process regarding cancer screening and treatment is associated with improved outcomes.

But offering and respecting patient choice goes beyond following guidelines and laying out options, Cheedella said.

Taking time to ask and listen has helped her guide many patients toward the choice that is right for them. Sometimes that means accepting what the patient needs rather than what the oncologist wants, she said.

And sometimes it means helping a scared patient find her way to a life-saving clinical trial rather than the palliative care option she initially requested after learning about her diagnosis, she said, recalling a patient with stage IV pancreatic cancer.

The patient had a friend who had a terrible experience with chemotherapy complications and side effects, and she knew she didn’t want to go through that.

“I held her hand, and we talked about the differences in her diagnosis,” Cheedella said. “She had a mutation that made her eligible for a clinical trial with treatment that had less side effects. She chose the trial, and she did great — and all of this happened because we paused, and I asked her what she wanted and why.

“So I keep asking, and I keep listening, because at the end of the day, it’s not about me curing cancer but about helping patients manage cancer and live with cancer,” she continued. “And that makes all the difference.”

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