Fearful 26-Year-Old Colon Cancer Survivor With Genetic Condition Has Preventative Double Mastectomy Surgery Postponed Due to Covid: ‘Who Knows What Could Happen If I’m Unlucky’

Seale's story is not unheard of. In fact, SurvivorNet has found, through dozens of conversations with top oncologists across the country, that physicians are having to adapt how they treat patients while meeting the new demands the pandemic has created.

The major question presented, experts say, is: What is the risk of doing surgery now, in this environment, versus waiting until some future time?

For Seale, having her preventative surgery a double mastectomy, which is when both breasts are removed canceled "caused a huge amount of anxiety as of course it started as preventative but who knows what could happen if I'm unlucky enough to have cancer develop while waiting."

Her worry is amplified for two reasons. One is that she has a condition called Cowden syndrome.

"Cowden syndrome means I have a really increased risk of a few cancers like breast and thyroid, so lots of people with this syndrome get preventative surgeries," she says. "It's a lot easier or meant to be than waiting until something goes wrong."

The second reason is that she says no one has called her yet to reschedule. Her surgery was supposed to take place on Nov. 18. But instead, she was told that "we will try again in the spring."

Related: Scared Patient's Double Mastectomy Canceled for Third Time Due to Covid: 'Cancer Patients Are Going Through Hell'

Seale's Bowel Cancer Battle

At just 20 years old, Seale was diagnosed with bowel cancer.

Bowel cancer is a general term for cancer that begins in the large bowel; this type of cancer can also be called colon cancer, rectal cancer or colorectal cancer.

Both men and women can get colon cancer. Overall, it is the third most common cancer in people of both genders in the United States. But it is also very preventable, with the recommended screenings.

Treatments for bowel cancer can include surgery along with chemotherapy, as well as radiation therapy. If the bowel cancer is detected early, treatment can be fully effective and stop the cancer from recurring.

In 2016, Seale had a subtotal colectomy, which was followed by chemotherapy in early 2017.

The Type of Colon Surgery Depends on the Location of the Tumor

The type of surgery that is performed for this type of cancer is dependent on the location of the tumor. A subtotal colectomy is required in certain cases, which is when the majority of the colon is removed and the rectum is left behind. This may have a greater impact on bowel function after surgery. However, many patients are able to adapt to the loss of this amount of colon.

"It's a huge amount of trauma to go through as you can imagine," Seale says, "and where I have Cowden syndrome as well, I want to minimize any additional upset, operations and treatment.

Related: 'My Life is In Jeopardy': Cancer Patients Terrified As Hospitals Overrun with Covid Cases Postpone Critical Surgeries and Treatments

Covid's Impact of Preventative Surgery

Doctors caring for cancer patients during the Covid-19 pandemic have been navigating uncharted territory. Their challenges have included managing new hospital protocols, as well as balancing patient treatment with precautionary measures, like surgery.

The pandemic has made the decision of whether precautionary surgery is necessary at this time less clear cut for several reasons: the increased risk of infection for patients, and also that in some communities hard hit by the virus, hospitals are restricting scheduled surgeries even if doctors feel they are necessary.

Covid-19 Has Changed Surgery and Hospital Protocols for Cancer Patients

"I think the major things that patients may experience in terms of the changes with surgery in this time of Covid-19 is that there are limitations in visitors to the hospitals, which I think is a big deal for many patients and is a change in terms of just having that support system in the hospital," Dr. Kimberly Levinson, director of Johns Hopkins Gynecologic Oncology at Greater Baltimore Medical Center, tells SurvivorNet. (This is yet another reason the necessity of precautionary surgery seems unclear.)

But it should be noted that if your doctor decides to proceed with surgery, and elective surgeries are being scheduled at your hospital, then it is vitally important to follow healthy lifestyle practices prior to surgery to support your immune system. Though these are important at any stage of the cancer journey, they are imperative during the pandemic, to maintain, as well as possibly boost, immune system strength.

Despite the changes to cancer care the pandemic has created, coupled with the fact that many patients may have to check in with their doctors via tele-health visits at least temporarily, SurvivorNet experts assure us that cancer care is not being compromised.

In cities and hospitals that have been harder hit by the virus, some doctors are delaying up-front surgery and giving patients a few more courses of chemotherapy until it is safer for them to undergo procedures. Though most cancer surgery would be considered at least semi-urgent, there may be situations where it can be safely delayed a little bit, experts say.

Patients need to discuss their own situation with their doctor, taking into account conditions in the city where they live, to determine the wisest course of action for them.

Contributing: SurvivorNet staff

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