Tens of millions worldwide are affected by close to 7,000 rare diseases, some of them cancers. Oftentimes, they have little in the way of support where diagnosis, treatment and aftercare are concerned; but they have a friend in the Rare Disease Interest Group, based at McGill University in Montreal, Quebec, Canada.

Steve Jacobsen was diagnosed with a form of head and neck cancer. Oropharyngeal cancer affected the back of his tongue to the extent he could not eat like you and I, and had no idea if he could eat again. After radiation treatment and chemotherapy, a PET scan revealed the cancer was gone. He can eat again, but says the toughest part of his journey was, after the insertion of a feeding tube, not knowing if he could ever swallow or eat again. Steve believes for everyone diagnosed with cancer, part of their care team should be a therapist who can help to keep the patient's emotions on a straight path.

In her late teens, Lexi Mestas was suffering from symptoms of ovarian cancer, but didn’t know they were related to ovarian cancer until undergoing the necessary tests.  Diagnosed with Low-grade Serous Carcinoma, Lexi via debulking surgery, she had both ovaries removed, along with her spleen, appendix, omentum and a hysterectomy.  With the support of family and the support group, Cure Our Ovarian Cancer, Lexi exercises daily and advocates for those diagnosed with ovarian cancer.

Pete Solomon, colorectal cancer survivor and former television sportscaster who also helped others by working in a library for the handicapped, was in good health until he noticed he was becoming increasingly fatigued. A trip to the doctor led to a colonoscopy and a diagnosis of Stage Four colorectal cancer, a procedure that included chemotherapy, resulting in the removal of his colon and five lymph nodes. In addition to the occasional mental lapses that are a byproduct of chemo, Pete had to wear and maintain a colostomy bag. Pete’s cancer journey eventually took a turn for the better, and physically he can do practically everything he could prior to the diagnosis. By way of advice, he suggests you listen to your body and trust your care team.

Freda Botha seemed to be in good health, until she wasn’t.  She began to feel tired all the time, then got constipated, then she couldn’t eat.  Air bubbles were discovered in her gut.  That led to the discovery of polyps on her colon and a diagnosis of colon cancer.  After a six-hour surgical procedure, Freda was hooked up to a stoma bag and told she would have to undergo a chemotherapy regimen. 

Freda Botha of Port Elizabeth, South Africa went from feeling fine to feeling tired.  She knew something was really wrong when while sitting at work, she fell asleep.  In addition to feeling fatigued all the time, she couldn’t eat.  When an egg yolk got stuck in her throat, and that cased her to seek medical attention. 

Freda saw a doctor, who recommended x-rays, which revealed air bubbles had formed in her gut, but doctors could not immediately tell what caused them.  She was going to undergo surgery and the procedure was supposed to take one hour.  However, when doctors opened her up, they saw polyps on her colon.  That resulted in the need for a biopsy, and from that came her diagnosis.

A one-hour procedure went six hours during which a stoma bag was installed.  After that Freda had to spend a week in ICU.  Next was a chemotherapy regimen from May to December 2010, an injection in her hand every other week.  Freda said she was fortunate in that her side effects were not nearly as bad as they have been for others.  She did experience a bit of hair loss, slightly decreased appetite, but the worst part was continued fatigue. 

Meantime, all the while, Freda Botha had a stoma bag attached to her.  First she had to learn how to maintain it.  Her first caregiver provided very little help, but a second caregiver was extremely helpful.  However, even when knowing how to manage the bag, there is always the possibility of it leaking, which Freda leery about going out in public.

For anyone who has to have a stoma bag, Freda advises that one not be afraid to ask questions, and make sure before leaving that they have been taught everything they need to know.

After four months, Freda was relieved to have the bag removed.  She still goes in for yearly checkups, but is upbeat when she shows up for them.

These days, Freda Botha says she can do just about everything she did before her diagnosis, but she does have to watch her diet as there some things she cannot eat because of they affect her colon.

By way of advice, she says to take your cancer journey one day at a time and that one doesn’t help themselves by overthinking or overstressing.

Additional Resources:

Support Group:

Cancer Action Network of South Africa (CANSA): https://www.cansa.org.za

In 2013, Marissa Willis noticed a pain on her left side that wouldn’t go away.  It got so bad that so that she went to an urgent care.  They took an x-ray and it revealed a large mass covering the area where her kidney should be.  She then got referred to her primary care`physician, which led to a surgical procedure, a radical left nephrectomy, to remove the tumor.  After the surgery, Marissa was told she had been diagnosed with Stage II kidney cancer.  She shares her story with the @CancerInterviews podcast.

When Marissa Willis of Blue Springs, Missouri felt a “weird sensation” in her left side, she thought perhaps she had pulled a muscle from working out too much, that or a hernia.  It was on a Sunday afternoon that she decided to go an urgent care, where x-rays were taken.  They showed a large mass, which looked like a cloud covering where her kidney should be on the left side of her intestine.  Nobody viewing the image could identify the problem. 

Marissa next went to her primary care physician, who ordered an ultrasound.  That began a ten-day process of referrals and tests, and she was optimistic they would determine what was wrong with her.  At this time, she didn’t have any of the symptoms of kidney cancer, such as fatigue, unexplained weight loss or flank pain, which one can feel on either side of their back. 

At the University of Kansas Medical Center in the Kansas City area, Marissa was told doctors wouldn’t know what was wrong with her until the tumor was removed.  They performed a radical left nephrectomy, which removed the tumor, her left kidney and the adrenal gland that was sitting on the kidney.  Five days after the surgery, Marissa was tld she had Stage II kidney cancer.  Her medical team said that the cancer was slow-growing and estimated it had been in her kidney for close to five years. 

About nine months later, the cancer resurfaced, but the nodules were so small, less than a centimeter, that doctors decided to opt for active surveillance.  That said, Marissa is grateful for the proactive work for her care team, which led to early detection of cancer in Stage II.

Marissa Willis is happy to say she is able to return to the active lifestyle she enjoyed before her diagnosis.  The one change she has to live with is that of watching her diet.  She is working with a dietician to monitor her sodium and protein consumption. 

Her advice to anyone diagnosed with cancer is to rely on those closest to them, family, friends, co-workers and their care team, because all of them will be needed. 

Additional Resources:

Kidney Cancer Association: https://www.kidneycancer.org

Dusty Baker’s prostate specific antigen (PSA) had been slowly rising when he was in his early fifties.  That got the attention of his doctor, who called for a biopsy.  When Dusty returned from a hunting trip, he learned that there were cancerous cells in four of the biopsy’s eight zones.  Dusty’s Gleason score, a measure of the cancer’s aggressiveness, was too high to allow for the less-invasive known as brachytherapy, or, ‘the seeds,’ meaning his best option was a prostatectomy, the removal of his prostate.

Dusty Baker of Sacramento, California, enjoyed terrific health as a major league baseball player and manager.  But because many of the older men in his family had died of prostate cancer, in his forties he started charting the PSA revealed by his annual checkups.  One year his PSA was 1.8, then the next year it was 2.3.  About six years later, it got up to 4.0. 

That ‘s when he underwent a biopsy and in 2001, he learned he had prostate cancer at the age of 52.  His Gleason score ruled out brachytherapy as an option.  Radiation treatment was a possibility, but he had known too many who made that choice and had bad outcomes.  That left a prostatechtomy.

In 2001, the procedure consisted of cutting from one’s navel down to one’s penis.  For the next week, Dusty was told he couldn’t lift his toddler son because doctors did not want Dusty ripping his tender stomach muscles.  Then for the next six months he noticed a change in his urinary function forcing him to wear pads because when the need to urinate materialized, he was unable to ‘hold it.’  This also resulted in his having to often get out of bed and urinate in the middle of the night.  These days, Dusty’s urinary function is almost back to normal.

Following his diagnosis, Dusty made some changes in what he ate and drank.  Although he didn’t eliminate his consumption of scotch, he sharply reduced it.  He began to cook for himself more frequently, including tofu, green beans and collard greens in his diet.

He didn’t enjoy it, but he had to go in for checkups every three months.  The checkups included tests, which meant waiting approximately ten days for the results.  The three-month intervals became six-month intervals, which became annual intervals.  Now, more than 20 years cancer free, the checkups are extremely infrequent.

By way of advice, Dusty Baker often hears from men he knows wanting to learn about his cancer journey.  He tells them to be assertive about getting the PSA test and if it leads to bad news, and aggressively address their diagnosis because early detection is so important.  Dusty also says it doesn’t hurt to acknowledge the power of prayer and positive thinking.

Additional Resource:

Fans for the Cure: https://www.fansforthecure.org

In 2010, Gary Brausen started coughing quite a bit, which he thought was no big deal until it continued to get worse.  He got a chest x-ray, then a bronchoscopy, in which tissue samples are obtained.  Then his pulomonologist called Gary and told him he had lung cancer, an extremely aggressive form of adenocarcinoma.  Further biopsies and scans and brain MRIs resulted in a diagnosis of Stage 3B lung cancer.  Despite this horrific news, Gary vowed to not let it be a death sentence.

Gary’s left lung was saturated with cancer cells, and doctors said it would have to be removed.  First up was a procedure called a mediastinoscopy, which searches for cancer in places other than his left lung.  If the procedure comes back negative, the care team could go ahead with the removal of the lung. 

Given the green light to do the surgery, it was extensive and tricky and painful because it cut through nerve endings in his back where nerve endings attach to the spinal cord.  But the procedure was a success and Gary’s left lung was removed. 

Gary Brausen was allowed a four-to-six-week break before going on an aggressive chemotherapy regimen.  It included the time-tested medications, cisplatin and alimta, with four treatments over three months.  Next up came another four-to-six-week break, then seven weeks of radiation treatment.  When that was over in October 2011, Gary said, “There wasn’t left of me.”  He had lost all of his muscle mass and 25-30 pounds. 

Then Gary had three more chemotherapy treatments.  After that, he went in for his first scan and the oncologist was stunned to look at the results and say he didn’t see any cancer and that Gary’s lymph nodes and organs looked good.  These tests were repeated every six months for five years after which Gary’s doctor said, “I don’t see any cancer.”  After two more years of clean scans, the doctor said, “I think you might have beat this.”

In 2017, Gary had a scare when he was diagnosed with a plural effusion, an infection of the lung.  He underwent a great deal of treatment, but the threat of a return of his cancer looming, test results revealed an infection but no cancer and the infection eventually went away.

Gary Brausen has achieved survivorship, defying the odds and getting the best of Stage 3B lung cancer; but his cancer journey continues with his serving as a mentor to lung cancer patients.  He tells them about what one can expect with a diagnosis, how to deal with chemotherapy and radiation treatment and how to deal with the stigma attached to lung cancer, as many people incorrectly think at every turn lung cancer is tied to smoking tobacco.

Additional Resources:

A Breath of Hope Lung Foundation: https://www.abreathofhope.org

What began as severe lower back pain for Teona Ducre led to a diagnosis of Stage III pancreatic cancer at age 41.  She underwent surgery to remove a tumor, but that was preceded by an aggressive chemotherapy regimen, first six months with folfirinox, supplemented by xeloda and gemzar abraxane.  Teona went through the terrible side effects associated with chemotherapy, but doctors determined she was in remission and fully cancer-free.

In March 2016, Teona Ducre of Atlanta, Georgia began to experience lower back pain.  In addition, there was nausea.  When she sought medical attention, she probably had acid reflux, perhaps irritable bowel syndrome.  When she became sick and had the chills, she went back to a doctor, who ordered a CT scan.  It revealed a large mass on her pancreas and on April Fool’s Day, she was told she could have cancer.

Teona went before another group of doctors who looked at the same scan and immediately said that she has Stage III pancreatic cancer, inoperable adenocarcinoma.  The decision was made to have a chance to remove the tumor, she would need to go on chemotherapy in an attempt to shrink the tumor.  If that was successful, then they would try surgery in about six months.  Ultimately this plan worked, but in 2016, the prospect of chemo before surgery was not the standard of care.  However, the care team had data that suggested it was better to first shrink the tumor and then operate.

Teona’s chemotherapy experience included getting a port in her chest, hair loss, her losing weight when eating became unpleasant as food tasted like metal.  All this was a result of her going on six months of folfirinox, a platinum-based chemotherapy.  She did 12 rounds and her white blood cells had dropped so low she had to take a break before resuming.  The chemotherapy regimen did what it was supposed to do, it shrunk the tumor and doctors were able to successfully remove what was left of the tumor. 

Ironically, after once being diagnosed with inoperable adenocarcinoma, she went in for her first post-treatment checkup, and her oncologist didn’t know what to do.  That was because so few people diagnosed with Stage III pancreatic cancer don’t make it as far as she did. 

The oncologist wanted to be safe and put Teona on a regimen of an oral chemotherapy, gemzar abraxane and xeloda.  Once that regimen was complete, the oncologist said Teona Ducre was in remission and cancer-free.  She still was not 100 percent, but had to go back to work because if she didn’t, her employer would have to discontinue her health benefits.  She split the difference and returned to work part-time as she was still feeling some fatigue. 

Teona Ducre has been cancer-free since November 2016.  With part of her pancreas gone, she still goes in for periodic checkups to check her blood sugar levels to make sure no tumors have developed and that she doesn’t develop diabetes.

Additional Resources:

Support Group:

Pancreatic Cancer Action Network

https://www.pancan.org

Purple Pansies

https://purplepansies.org

Piedmont Oncology Andrew Page Pancreas Cancer Foundation

https://piedmont.org/cancer/pancreatic-and-liver/andrew-page-pancreas-cancer-fund

Teona Ducre survived first a misdiagnosis, then a correct diagnosis of Stage III pancreatic cancer. Even while going through treatment, which included chemotherapy, she was a vigorous advocate for those going through a pancreatic cancer journey. In remission since 2016, Teona is a blogger, a public speaker in the fight against cancer, and she is a tireless volunteer for the Pancreatic Cancer Action Network (PanCAN.org).