Cancer Patients Face Treatment Delays And Uncertainty As Coronavirus Cripples Hospitals

Yves here. Several NC regulars, such as Tom Stone, have said they are in the midst of treatment for cancer and are very concerned about what happens next, both the danger of suspending it and the risk of continuing to go to hospitals and doctors’ offices when getting immuno-suppressing treatments. I know solace is only a small comfort, but I hope readers who are affected and find it beneficial to discuss their situations will speak up.

One item that leaps out in this discussion: the lack of any national guidelines on cancer and presumably other urgent treatments. Where is the CDC? Or for that matter, one of the national organizations, like the American Society for Clinical Oncologists?

Another group of patient has a mirror image problem: pregnant mothers can’t do much to change their timelines. Even though documents like this Harvard Health newsletter are reassuring, a friend’s daughter, herself an MD whose MD husband got a mild case of coronavirus, is completely freaked out, as are the other pregnant MDs in a Facebook group., likely based on the adverse impact of the Spanish flu on the unborn and concerns about pandemic infections posing similar dangers.

By Will Stone, @WStonereports. Originally published at Kaiser Health News in partnership with NPR

The federal government has encouraged health centers to delay nonessential surgeries while weighing the severity of patients’ conditions and the availability of personal protective equipment, beds and staffing at hospitals.

People with cancer are among those at high risk of complications if infected with the new coronavirus. It’s estimated 1.8 million people will be diagnosed with cancer in the U.S. this year. More than 600,000 people are receiving chemotherapy.

That means millions of Americans may be navigating unforeseen challenges to getting care.

Christine Rayburn in Olympia, Washington, was diagnosed with breast cancer in mid-February. The new coronavirus was in the news, but the 48-year-old did not imagine the outbreak would affect her. Her doctor said Rayburn needed to start treatment immediately. The cancer had already spread to her lymph nodes.

“The cancer tumor seemed to have attached itself to a nerve,” said Rayburn, who was a schoolteacher for many years. “I feel pain from it on a regular basis.”

After getting her diagnosis and the treatment plan from her medical team, Rayburn was focused on getting surgery as fast as possible.

Meanwhile, the coronavirus outbreak was getting worse, and Seattle, just an hour north of where Rayburn lives, had become a national focal point.

Rayburn’s husband, David Forsberg, began to get a little nervous about whether his wife’s procedure would go forward as planned.

“It did cross my mind,” he said. “But I did not want to bother with that possibility on top of everything else.”

Two days before Rayburn’s lumpectomy to remove the tumor, Forsberg said, the surgeon phoned, “pretty livid” with bad news. “She said, ‘Look, they’ve canceled it indefinitely,’” Forsberg remembered.

The procedure had been scheduled at Providence St. Peter Hospital in Olympia, a facility run by Providence Health & Services. Across Washington, hospitals were calling off elective surgeries, in order to conserve the limited supply of personal protective equipment, or PPE, and to prevent patients and staffers from unnecessary exposure to the new coronavirus.

“It just felt like one of those really bad movies, and I was being sacrificed,” Rayburn said.

“It was like we just got cut off from the experts we were relying on,” her husband said.

The hospital said it would review the decision in a few weeks. But Rayburn’s surgeon said that was too long to wait, and they needed to move to Plan B, which was to begin chemotherapy.

Originally, chemotherapy was supposed to happen after Rayburn’s tumor surgery. And rearranging the treatment plan wasn’t ideal because chemotherapy isn’t shown to significantly shrink tumors in Rayburn’s type of breast cancer.

Still, chemotherapy could help stop the cancer from spreading further. But as the couple figured out the new treatment plan, they ran into more obstacles.

“She needed an echocardiogram, except they had canceled all echocardiograms,” said Forsberg.

They spent days on the phone trying to get all the pieces in place so she could start chemotherapy. Rayburn also started writing to her local lawmakers about her predicament.

Hospitals Prioritize Urgent Cases

In mid-March, Washington Gov. Jay Inslee banned most elective procedures, but he did carve out exceptions for certain urgent, life-threatening situations.

“It actually said that it [the ban] excluded removing cancerous tumors,” Rayburn said.

Providence hospitals use algorithms and a team of physicians to figure out which surgeries can be delayed, said Elaine Couture, chief executive of Providence Health in the Washington-Montana region.

“There are no perfect decisions at all in any of this,” said Couture. “None.”

Couture would not talk about specific patients but said she assumes other cases were more urgent than Rayburn’s.

“Were there other patients that even had more aggressive types of cancer that were [surgically] completed?” Couture said. “As sick as you are, there can be other people that are needing something even sooner than you do.”

Couture said hospitals are burning through supplies of masks, gowns and gloves and need to make tough calls about elective procedures.

“I don’t like that, either, and it’s not the way that we want our health care system to work,” Couture said.

Across the Providence hospital system, personal protective equipment is being used much faster than it can be replenished, she said.

No Single Standard

At the American Cancer Society, Deputy Chief Medical Officer Dr. Len Lichtenfeld is hearing from patients across the country who are having their chemotherapy delayed or surgery canceled.

“There was someone who had a brain tumor who was told they would not be able to have surgery, which was, basically, and appears to be a death sentence for that patient,” said Lichtenfeld.

This is uncharted territory for cancer care, he said. Hospitals are making these “decisions on the fly” in response to how the pandemic looks in a particular community. “There is no single national standard that can be applied. I am afraid this is going to become much more common in the coming weeks.”

The cancer society recommends that people postpone their routine cancer screenings — for now.

The American College of Surgeons has published guidance on how to triage surgical care for cancer patients. But Lichtenfeld said every decision ultimately depends on the availability of resources at the hospital and the pressures of COVID-19. In Washington state, which has been hit hard, hospitals are shifting surgical space and beds away from other kinds of treatment.

“We need to forecast two to three weeks down the line when there are more patients that are ill,” said Dr. Steven Pergam, medical director of infection prevention at the Seattle Cancer Care Alliance. “We need to make sure there’s adequate bed capacity.”

Pergam said the care alliance is adjusting treatment plans and, at times, avoiding procedures that would keep cancer patients in the hospital for a prolonged period.

“It really depends on the cancer and the aggressive nature of it,” he said. “We have looked at giving chemotherapy in the outpatient department and changing the particular regimens people get to make them less toxic.”

But Pergam said they expect to keep doing urgent surgeries for cancer patients, even as the pandemic grows worse.

Christine Rayburn in Olympia was steeling herself for the months of chemotherapy to come: staying inside her home and even avoiding contact with her adult daughters, to avoid any possible exposure to the coronavirus.

Then, two weeks ago, the surgeon called again. She had persuaded the hospital to allow the surgery after all, 10 days later than initially planned.

Rayburn and her husband wonder what would have happened if they hadn’t spoken up or pushed to get her lumpectomy back on the hospital’s surgical schedule. Forsberg said it’s possible they could have ended up without the care Rayburn needed.

“If we didn’t say anything, in my mind that may be where we would be at,” he said. “But in our minds, that was not an option.”

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15 comments

  1. The Rev Kev

    There may be another bottleneck with essential & nonessential surgeries and that is the blood supply. Donation sites are closing, people are reluctant or not allowed to go out for donating blood while blood drives have had to be called off. We are experiencing the same problem in Oz but here is an article discussing the US blood supply problem-

    https://www.theguardian.com/us-news/2020/mar/21/us-blood-donations-shortage-coronavirus

    Without enough blood, the amount of surgeries will probably be both limited and prioritized.

    Reply
  2. IsabelPS

    About pregnant mothers: Portugal has had 3 births to covid-positive mothers and all went well. It is a hassle of a procedure, of course, and the baby stays in quarantine well after the mother goes home, if she is OK, but so far there is no evidence that there is transmission from the mother to the baby. From 26th march on, all mothers are tested before the birth, and I have seen something on TV about a woman who only got to know a couple of hours before the birth. Quite impressive, the technological array.

    Reply
  3. Amfortas the hippie

    It’s a pretty heavy weight.
    I’m glad that wife’s big surgeries got done when they did(Giant Tumor Removal was Feb 2019).
    The every two weeks chemo…wherein we go to san antonio, get a blood panel, and sit in the Chair Room for 4 hours plus…is contingent upon whether anyone has wandered into the clinic showing symptoms of covid.
    if that happens…test or not(!)…the place shuts down for deep cleaning, and all the doctors and nurses are to be quarantined for 2 weeks.
    This has already happened to the clinics all around Houston.
    The options, if “our” clinic goes down, are limited.
    There’s 2 Texas Onc. clinics out our way…Kerrville and Fredericksburg…but they’re small…and just as exposed as any other.
    I put a bug in the ear of our Oncologist that if that happened…or if things just got too dangerous for wife to venture out…we could go back on the Folfox Pill. we only moved to Folfury(sp-2) because the company that did a scan this feb. only had a year old scan to compare it to, and wife had a sinus infection at the time(prophylactic hospital stay, included) that threw off all her numbers. IOW, it was because of shaky data…not because the folfox had ceased to do what it was supposed to do.
    I posited that going back on that pill, under pandemic circumstances, was prolly a good risk.
    we’ll learn this thursday if that bug in the ear took root.
    what her cancer means to the rest of us during this crisis…is more stringent quarantine procedures. no takeout, no contact at all…only cousin and i leave the farm…and then only with the most insane precautions.
    like spraying everything we bring in with lysol, inside and out, stripping naked in the yard when we get home and going straight to outdoor shower, and so on.
    we’re fortunate to live way out here where we can do that,lol.
    no neighbors to complain.
    it’s been pretty crazy…the fear of an invisible enemy that could be on anything.
    and it ain’t lost on us that it could be much worse: if this had happened a year ago…or especially a year and a half ago…we’d be in a bad place.
    to the rest of the cancer people on NC…and anyone who is immunocompromised…good luck and stay safe.
    we’re right there with you.

    Reply
  4. Tom Stone

    Even when the peak of new infections passes those of us who must have some or all of our chemo treatments done in a hospital setting will be at increased risk.
    Here in Sonoma County the curve has begun to flatten and the peak is predicted to be mid June, the earliest time that the balance of risk/reward will tilt in favor of in hospital treatment for me is sometime in August.
    That time frame will vary by location and by individual circumstance.
    In some ways I am fortunate, I was halfway through a brutal ( Brutal because I am allergic to both drugs specific to my treatment) six month treatment regimen when the Corona virus showed up and had already laid in an ample supply of gloves and begun isolating in early January.
    I addition, I will also be able to get outpatient treatment at my local cancer center, the doctor’s there purchased a large supply of PPE in early February, the risk is acceptable.

    No green salads allowed until I have an Immune system again, I’m dreaming of green salads…I never expected a salad to be more dangerous than a blonde.

    Reply
    1. Amfortas the hippie

      “I’m dreaming of green salads”

      I feel ya, man.
      Wife says things like that, sometimes.
      That part of it is underappreciated.

      Good Luck, and hang in there, Tom.

      Reply
    2. Synoia

      After peak infections and deaths, there remains those (probably a significant percentage) susceptible to CV…

      What metric drives lifting the restrictions, and what are the chanes that infections (and deaths) rebound?

      Flatting the curve appears to require an acknowledgement of “Herd Immunity” and keeping distancing in place until that limit is attained, or the population at risk is immunized with a vaccine (paid for by whom?)

      Wich assumes either the Herd Immunity milestone is reached under the current “shelter in place” regime, or an effective vaccine is created.

      What happens if Herd Immunity is not attained? Or the vaccine is only party effective?

      Reply
  5. Tom Stone

    To clarify a bit, the treatment I will be able to get on an outpatient basis is not ideal, it is both less brutal ( Only two or three days unable to sleep due to nausea) and a good deal less effective.
    Half a loaf…

    Reply
  6. ambrit

    Luckily, Phyllis has shown no signs of renewed cancer since the leg came off. That is neither here nor there. She was going full bore after a prosthetic leg. (The cost issues with that are another matter.) That is on indefinite hold now. Physical therapy is also not on for now, so, even if the prosthetic was available now, learning to use it, which requires literal hands on therapy and mechanical adjustments would be questionable.
    This pandemic has shown how much of ‘modern’ medicine requires close proximity between ‘provider’ and ‘patient.’ As an example, Phyl’s last Doctors appointment, (with a General Practitioner,) was done over the telephone.
    I’ll observe that the limits of Telemedicine will be exposed by this sudden real world trial of the concept. A lot of “real” medicine is reliant on learned skills on the part of the provider. I’m wondering just how much of the “art” of medicine can be automated.
    Good luck to all who are having to adjust to the “new normal” of life under the Dreaded Pathogen.

    Reply
  7. JEHR

    I was diagnosed with lymphoma of the spleen in December 2019 (Canada) and had my treatments in early January 2020. I am going to have a telephone appointment with my oncologist this week when I hope to find out whether further treatments can be delayed, or if not, how I can manage to protect myself when getting infusions in the hospital. I sometimes feel as though I have been given the choice of dying from cancer or dying from covie-19. I do feel, though, that I have had a good long life and did the best I could with what I had and do not regret much.

    I hope all the cancer patients are able to get the treatment they need in a timely fashion.

    Reply
  8. Adam1

    My oldest son’s piano teacher is in this boat. She literally started a pre-surgery regiment of chemo the week we locked down. She originally told us she was going to continue to come for lessons but we told her no. If she wanted to continue fine, but virtual. She’s increasingly immuno-compromised at the moment and we worry a lot about her. but her cancer is very advanced so shrinking the tumor and removing it is her only hope. She just needs to survive to get to surgery.

    Reply
  9. Ana

    Here in Sacramento Calif, there are a number of high end medical resources with the largest and best (a teaching hospital) run by the University of California.

    I can speak to my experience and four others involving the teaching hospital in March. I have a very rare genetic condition which requires a team with expertise in genetics, bone density, metabolism, mobility and pulmonary issues.

    My ex is a long time ortho/trauma nurse with melanoma, my good friend’s son was attacked with a tire iron and required extensive brain surgery and the use of a ventilator in ICU, and finally two friends were each a week away from knee replacement surgery.

    All of my regular and exotic tests and appointments have been pushed into the fall. My ex was half way through his chemo and was told the remainder of his chemo was cancelled and would not be resumed.

    My friends son died after surgery to insert a trachiotomy that was done in order to free up the ventilator he was using. Two different friends each of whom are hardly able to walk were sent home with leg braces when their “elective” surgeries were cancelled.

    These examples are not a scientific study. However people are going to die or have dreadful lives because of non appealable medical treatment decisions based on the virus.

    These are not triage decisions made at intake in the ER. Rather they are decisions impacting people who are using the medical system in normal ordinary ways. Those who die will not show up in the official virus death count.

    Ana in Sacramento

    Reply
  10. anon in so cal

    This is a huge problem, not only for cancer patients but for those with other conditions that require prompt and/or ongoing treatment. I have no medical background or expertise to assess the message from Lombardy, Italy, but the message sounded very wise: it appeared to urge authorities to avoid bringing covid19 patients to all hospitals in a region and to instead implement some kind of division of labor such that some hospitals within a region could continue to treat non-covid patients and remain relatively sterile, while others would exclusively convert to covid treatment centers. Because the US apparently did no pandemic planning and ignored clear early warnings, the pandemic caught everyone off guard and decisions are now seemingly made on the fly.

    Reply
  11. Synoia

    My sister in law recently died after a 4 years of Cancer treatment.

    My personal response, on my medical directive, is “pull the plug.”

    Reply
  12. Lil’D

    Not in the same league, but a good friend has lupus for which she takes hydrochlorquine
    Trying to get a refill… CVS is out

    Reply

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