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.  Lexi achieved survivorship, but lost her battle with cancer in 2023 at the age of 29.

Kidney cancer presents a unique set of challenges.  It does not present a clear genetic picture, making it difficult for one to get out in front of the disease.  This from Sallie McAdoo, the medical director of the Kidney Cancer Association on the @CancerInterviews podcast.  Because ultrasounds and CT scans often provide false positives when detecting small tumors on the kidney, she says active surveillance is often the best way to go when such tumors are detected.

Many cancer diagnoses can be the result of inherited conditions, but not so with kidney cancer.  Sallie says many kidney cancer diagnoses are tied to metabolism.  As such, the notion of eating well to prevent cancer is even more crucial because diet and metabolism can really affect the growth of the kidney and the tumors that are there. 

Another area regarding kidney cancer that is murky is that doctors cannot say there is a specific age in which one should begin getting checked for kidney cancer.  Elderly people can be diagnosed with kidney cancer, as well as those in their late teens, says Sallie. 

She says the best person to watch out for your possibility of kidney cancer is yourself.  That includes paying attention to your body.  If you experience recurring lower back pain or fatigue, seeking medical attention is a good idea.

Sallie McAdoo says because many ultrasounds or CT scans for kidney tumors yield false positives, when tumors are small, it is better to engage in active surveillance, as opposed to rushing into a treatment regimen that could do more harm than good.  By having these scans periodically, if kidney tumors grow to an extent in which they warrant treatment, the patient will then be positioned to surgically address them.  However, Sallie says that active surveillance is only an effective tool if the patient goes in for their appointments when they are supposed to go in.  A sufficient interval for such visits either once every six or twelve months.  According to Sallie, the best interval is something that should be decided by doctor and patient.

Sallie also says kidney cancer patients should be open to being involved in clinical trials.  She says patients taking part in clinical trials will get the standard of care and access to the forefront of new drugs designed to combat kidney cancer.  With more than 200 existing kidney cancer clinical trials, there are many options for patients to explore.

Additional Resources:

Support Group:

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

Michael Maalouf Description

The Rare Disease Interest Group (RareDIG) is run by medical students at McGill University in Montreal, Quebec, Canada.  Its Director is Michael Maalouf, who speaks with the @CancerInterviews podcast.  The students seek to raise awareness for rare diseases, including rare cancers, such as Lynch Syndrome.  Michael says there is oftentimes a lack of representation for those diseases, especially when it comes to diagnosis and treatment.  He says RareDIG wants to enhance awareness for those in the early stages of medical school.

Michael Maalouf is from Toronto, Ontario, Canada, and studied at the University of Toronto.  It was there that he conducted research at the city’s Hospital for Sick Children, and learned a lot about rare diseases.  His research led him to medical school at McGill and in 2017, RareDIG was formed.

While studying at the University of Toronto, he saw how in many instances, when a child was diagnosed with a rare cancer, doctors could not pinpoint what type of cancer it was, and then, once they did, they were unsure how to treat it. 

Since joining RareDIG, Michael Maalouf has spoken with medical students across North America about rare diseases.  He says in his experience, once he shares the challenges of raising rare disease awareness with medical students, they want to learn more.  Michael is optimistic about increased awareness because when he shares what he knows with other students, they want to share what they know with still more students. 

Michael says increased awareness has to come not only from medical students, but from established members of the medical community.  To maximize this message, he says groups like RareDIG have to target it in a way to get the best possible outcome.  For instance, rare disease advocates approach an established cardiologist, they need to highlight rare diseases in cardiology, such as arrthymias.

A rare form of colorectal cancer is a syndrome called Lynch Syndrome.  Perhaps one or fewer people out of 10,000 are diagnosed with Lynch Syndrome, but Michael says if you add up all the rare cancers, they account for 22 percent of all cancers diagnosed worldwide.  Bringing that statistic to light is part of RareDIG and similar groups creating awareness.

In addition to medical students and established health care professionals, Michael says the attempt to increase awareness needs to involve pharmaceutical companies.  For that involvement to materialize, the pharmaceuticals need to be motivated to research rare cancers instead of tackling a cancer that has a much higher profile.

In the meantime, RareDIG is working hard to connect with medical schools at universities across North America so that they amplify RareDIG’s work.

Additional Resources:

Rare Disease Interest Group: https://www.raredigmcgill.com

Lori Shipman thought something was wrong when a persistent cough would not go away.  A chest x-ray led to a bronchoscopy, and not long after that, she was informed by telephone that she had Stage 1A lung cancer, a form of non-small cell adenocarcinoma.  After surgery, Lori recovered quickly and resumed her active, outdoorsy lifestyle.

On a vacation to Florida in September 2015, Lori Shipman started coughing and the cough persisted even after she returned to home in Wayzata, Minnesota.  Partly because of her busy schedule, it wasn’t until just before Christmas that she decided to get the cough checked out when she went to an urgent care. 

Lori underwent a chest x-ray and was diagnosed with pneumonia.  She was put on prescription medicine, then antibiotics, then a stronger dosage of medication, none of which made a difference.  Her primary care physician next called for a CT scan in March 2016, which is when they saw something in her lung.  However, the results of that scan did not reveal a clear-cut cancer diagnosis.

Lori Shipman’s PCP sent her to a pulmonologist.  He scheduled a bronchoscopy, and days later, he called Lori to tell her she had Stage 1A lung cancer, a form of non-small cell adenocarcinoma. 

Lori opted to go to the renowned Mayo Clinic in nearby Rochester, Minnesota for a second opinion.  Doctors there looked at bronchoscopy and came to the same conclusion, that she had lung cancer.  They had a very aggressive plan for surgery, to which Lori agreed.  Before the procedure, there had to be a battery of tests and a PET scan.  Eventually they were completed and a date for the surgery was set. 

The procedure was a lobectomy.  It was her right lower lobe that they went in and removed, a successful surgery. All of Lori’s margins were clear and she was staged at 1A, which is very rare in the world of lung cancer.

Although the surgery was successful, its aftermath was difficult.  She was in pain with every breath she took, but eventually her care team was able to get the pain under control.  In the meantime, Lori tried eating in a healthy way and surrounding herself with love from family and friends.

Lori is happy to report that within six weeks, she was able to go back to work, and in her leisure time, she cold swim and go on walks.  At first, once reaching survivorship, she was wary about the cancer returning, but once she reached the five-year mark, she became increasingly hopeful abut the future.

By way of advice, Lori Shipman says one should listen to their body.  Lori says if you feel like something is wrong, then something is wrong.  She adds that even if yo lack medical training, the best advocate for you, is you.

Additional Resources:

Support Group:

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

What began as severe GI issues for Nick Pifani led to a diagnosis of Stage III pancreatic cancer.  The tumor surrounded the superior mesenteric artery, ruling out surgery as an option.  Instead, doctors went with folfirinox, an aggressive form of chemotherapy.  When that didn’t help much, he went on radiation treatment.  It moved the tumor far enough away from the artery that surgery could be safely done.  A competitive runner, Nick addressed his cancer journey like a difficult race.  He eventually returned to work, resumed running and re-learned his old dietary habits.  He shares his story with the @CancerInterviews podcast.

In January 2017, Nick Pifani of Delran, New Jersey began feeling a lot of GI distress.  Things got so bad he ended up in an emergency room.  His health worsened when he began eating less, sleeping less and had extreme back pain.  That brought on a second trip to the ER.  They thought there might be something wrong with his gall bladder, but an ultrasound indicated the gall bladder was fine.  Next was a CT scan that revealed a sizeable mass on Nick’s pancreas.

To learn more, Nick’s family doctor ordered an MRI.  Several hours later, doctors called him to confirm he had Stage III pancreatic cancer.  He was next hit with the news that his cancer was inoperable be it surrounded the superior mesenteric artery and vein, making surgery impossible.  Instead, doctors opted for an aggressive form of chemotherapy called folfirinox. 

Nick Pifani experienced the symptoms one associates with chemotherapy.  They included fatigue, the metallic taste of food and cognitive issues.  Not only did the chemo take a toll, but it did little to attack the tumors on his pancreas.  So, his care team switched to a regimen of radiation treatment.  It helped, but it took one more step to position Nick for surgery.

Through a Whipple procedure, known specifically as a Pylorus Preserving Whipple procedure, to remove the tumors, they took out his gall bladder and a third of his pancreas.  They also removed the proximal jejunum, which connects the pancreas and the small intestines.

The final step was the surgery itself, which was a success, which thrilled Nick Pifani, knowing that at one point his cancer was determined to be inoperable.  He was in a great deal of pain, but went through physical therapy.  As he did that, he learned how to eat the foods he had to give up during chemotherapy.  Eventually, he could run again, and he began to approach the competitive level he maintained prior to his diagnosis. 

By way of advice, Nick Pifani says it is important to know your body, and if diagnosed, to know the symptoms.  His knowledge of the symptoms led to early detection, which in his mind, made the difference between his being diagnosed as Stage III and not Stage IV.

Additional Resources:

Support Group:

Pancreatic Cancer Action Network (PanCAN): https://www.pancan.org