Posts Tagged ‘Cancer’

Mayo: My Best Hope for Treating My Rare Cancer

January 20, 2011

Mayo Clinic had already been a source of invaluable consultations for my long-time autoimmune Sjogren’s Syndrome and for genetic counseling to ascertain potential genetic predisposition for the autoimmune conditions, cardiomyopathy and cancer that populated my family tree.

But late in 2008, skilled staff at Mayo Clinic in Rochester, Minn., greatly increased the odds that I’d be alive to write this blog entry at the beginning of 2011. I’ll be forever grateful to the surgical, oncology, gynecology, digestive health and complementary/integrative medicine staff that have provided medical treatments and ongoing consultations for my metastatic appendiceal adenocarcinoma.

Dianne Rhein

Light vaginal bleeding in the setting of a prior total abdominal hysterectomy began late in September 2008 while I was at the University of California in San Francisco participating in an international genetic study of Sjogen’s Syndrome. A biopsy at Luther Midelfort – Mayo Health System in my hometown of Eau Claire, Wisc., in late October revealed adenocarcinoma consistent with a colorectal primary. While my diagnostic colonoscopy revealed no signs of colon cancer, the staging CT scans revealed an appendiceal mass and a vaginal cuff mass. Surgical consultations were set to begin November 18 at Mayo.

Pulsating lower right quadrant pain landed me in Luther Midelfort’s Emergency Room on the afternoon of November 5th. The Emergency Room doctor treated my pain, and once my condition was stabilized, sent me off to Mayo Clinic in the middle of the night with plans to see Dr. Donald Jenkins, a critical care surgeon stationed at St. Marys Hospital, to serve as the lead for my medical team.

A wide range of consulting white-coated professionals were in and out of my hospital room in the following days. Appendix cancer is very rare. I had confidence that my medical team was well-prepared for all possible scenarios. Surgery took place on November 11 and an intact appendix, 14 lymph nodes, 12 inches of my colon, the tumor embedded in my vaginal cuff and enough tissue to assure clean margins were all removed. A smiling Dr. Jenkins announced to my anxious siblings that the surgery had gone “better than textbook.”

My post-surgical consults a few weeks later included Dr. Jenkins, medical oncologist Dr. Axel Grothey and internal medicine physician Dr. Amit Sood, with Mayo’s Complementary and Integrative Medicine program that I’d read about months ago in a Mayo Clinic newsletter. Dr. Grothey has consulted closely with my Midelfort Clinic oncologist Dr. Sandeep Basu to guide my chemotherapy regime. Twelve rounds were provided at Luther Midelfort’s Cancer Center from late December 2008 to mid-June 2009, with quarterly CT scans, blood work and Dr. Grothey consults at Mayo. I have found the office visits I’ve continued with Dr. Sood particularly valuable, in addition to his paced breathing DVD (also available as an IPhone app) and his Log On book detailing his many recommendations for mind-body healing.

Unfortunately vaginal bleeding in mid-February 2010 followed by a biopsy confirming vaginal wall invasive grade 3 adenocarcinoma of the appendix had metastasized. PET/CT scans also identified multiple peritoneal nodular regions suspicious for tumor recurrence. I started back on chemotherapy the end of March 2010, this time of a palliative nature. Surgery was deemed not an option. The cancer is now considered advanced, incurable and eventually terminal. I just completed chemotherapy treatment 27 at Luther Midelfort.

While in surgery at Mayo Clinic way back in November 2008, my sisters started a Caringbridge page for me. I’ve now have over 15,000 visits. This venue serves as a vehicle for me to share my
experiences and feelings and to gather up love and support from all over the country. Good friends here in Eau Claire helped me organize a “Share the Care” Morning Glories Circle of Care network to lend practical assistance and encouragement. My many years as a social worker with older adults and disabled persons continues to be an asset for me at this juncture, particularly my years with Hospice.

I’ve arranged for my body to be donated to Mayo Clinic for medical research, continuing the family traditions of my father Jim who died of cardiomyopathy and my sister Mary who died of ovarian cancer. I continue to value my quarterly visits to Mayo, where I always stop by for a few quiet moments in the life-affirming meditation chapel. Staff at the Stephen and Barbara Slaggie Family Education Center has kept me apprised of any up-to-date research articles on appendix cancer. I was thankfully able to participate in a brown-bag session on Intensions for Healing which connected me with other cancer patients intent on living a full life.

I look forward to receiving chemotherapy in the new cancer center at Luther Midelfort. I remain thankful that the close collaborations between my Mayo Clinic and Luther Midelfort medical teams have given me many days of living, with a hope of many more. And we are all rooting that I shall be in the audience at the University of Chicago in June 2012 to see my youngest daughter graduate. My “Dianne’s Future Amazing Life Adventures List,” that I started while awaiting surgery at Mayo Clinic, has served me well since my cancer diagnosis. I’m hard at work adding new dreams for 2011.

My most important life goal right now is to create fun, lasting memories with my two delightful young adult daughters Emma and Sally O’Brien. Together, we crossed out one of my “Amazing Life Adventures” list dreams by enjoying the Wizarding World of Harry Potter in Orlando, Fla., this past September. To keep me hopeful that my continuing chemotherapy treatments will garner me many more months of quality living, we are scheming to tour southern England in late August on the trail of writer Agatha Christie, whom we all relish. Hope is a very powerful thing. It could happen!

In the video below, Dianne shares some of her story.

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A Mayo Moment with a “Woman Cut in Half”

December 20, 2010

A big part of the reason for Sharing Mayo Clinic is to give Mayo patients the opportunity to share their stories of how Mayo has changed their lives. It’s inspiring for employees to hear about the difference we make together as an organization and in teams, and how each of us individually contribute.

At this morning’s Surgical Quality Conference, a quarterly meeting of all of the departments involved in surgery at Mayo Clinic, staff heard the story of Janis Ollson, who had a first-of-its kind pelvic spine reconstruction after cancer surgery three years ago. Thanks to a surgical team led by Dr. Michael Yaszemski, she not only survived but has returned to an active lifestyle with her husband and two children.

Here is the original Mayo Clinic Medical Edge television story we produced about Janis:

Then in September of this year, the Winnipeg Free Press did a feature on Janis, which they gave a somewhat provocative headline: Miracle mom: Mayo surgeons cut her in half, cleared out her cancer. The story was then picked up throughout Canada, including The Vancouver Sun, and also in the U.S. with Fox News and others.

Janis is now 32 years old, and this morning she joined the Surgical Quality Conference via Skype videoconference, live from her home in Canada. The staff got to watch the video from her live studio appearance on NBC’s Today show. (You really need to watch that story!)

Here is a recording of the Skype conversation Dr. Yaszemski had with Janis after the Today segment was shown:

Thanks to Janis for sharing her story, and to the care team members who did such a good job with her.

Emma’s gift

November 11, 2010

When offered a choice between a trip to the doctor or a shopping day at the American Girl Store, eight-year-old Emma chose the doctor — hands down. An extraordinary choice, but then, Emma is an extraordinary girl.

Emma and Dr. Svetomir Markovic

This wasn’t to be a typical doctor’s visit. Emma came to Mayo Clinic to surprise Svetomir Markovic, M.D., Ph.D., professor of medicine, oncology, and Charles F. Mathy Professor in Melanoma. In her hand she held a check for more than $1,000. Money she’d raised for Mayo Clinic melanoma research in his honor.

Emma’s reason for the gift is simple. “It’s because he takes good care of people,” she says. She knows first hand the care of Dr. Markovic. He was her father’s oncologist. Sadly, Emma’s father, David, lost his battle to melanoma on August 28, 2009.

So this year, as Emma’s family of Langdon, North Dakota was preparing to participate in their local American Cancer Society’s 2010 Relay for Life, it was Emma’s job to design t-shirts for their team — Team Scrappy. Emma’s mother explains that her husband, David earned the nickname “Scrappy” in high school when he wrestled.

“He was a fighter,” she says, “And I watched how hard he fought melanoma, so it was an appropriate nickname for him and the perfect name for our team.”

Although Emma says that she never quite “got” the Scrappy team name, it really didn’t matter because it didn’t interfere with the t-shirt design: a red star for Dad, and #1, “because Dad was #1,” she smiles, and the word BELIEVE across the front.

As she designed the t-shirt, Emma got the idea of selling them to raise money for melanoma research at Mayo Clinic, “to help find some answers for people with melanoma,” she says.

Emma wrote a thank you letter that accompanied each t-shirt explaining the project and where she was donating the money. “I miss my daddy very much and think about him all the time,” she wrote. “All the money I raise is going to be given to the Mayo Clinic in honor of my daddy’s doctor, Dr. Markovic.”

Her initial goal was to raise $500, and she more than doubled it.

“This entire story brought tears to my eyes,” says Dr. Markovic. “This is a wonderful family who has had to deal with so much. Some months it seemed they spent more time in Rochester than at home. I’ve known them for a long time.”

“Our favorite topic, once we ‘dealt with cancer,’ was to talk about our children,” says Dr. Markovic. “Our children are of similar age and they always had good parenting tips for me, and so I was overwhelmed when I heard that little Emma had done such a wonderful thing and raised money to help me fix cancer. With help like that, how could we ever lose?”

Even at this young age Emma seems to grasp the importance of caring even if cure is not always possible. She’s honored the caring at Mayo through her gift. More importantly, she’s taken up the torch to support the care of people with the disease and its study. She never misses an opportunity to inform others about melanoma and the dangers of the sun. “Learn to wear a hat,” is one of her mantras.

Her enthusiasm is contagious and her salesmanship . . . well, let me put it this way, she dropped off a check for Dr. Markovic and picked up a t-shirt order from him with sleight of hand a magician would envy.

Having accomplished that, Emma and her cousin, Grace set off to summer camp. With a skip in her step and a smile on her face, she left Dr. Markovic saying she’d be back next year with double the proceedings of this year.

Emma’s story was written by Dianne M. Axen, communications consultant in the Department of Develoment, Mayo Clinic in Minnesota

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MaryEllen’s Journey – A 5-part breast cancer video series (Episode 1)

October 1, 2010

MaryEllen Sheppard knew something was wrong as soon as she felt a thickened patch of skin on her right breast.  She didn’t feel a lump, but knew the change was different enough to get it checked out.  A mammogram and subsequent biopsy caught her by surprise.

She had breast cancer.

Looking  to share her experience with other women coping with this disease, the 53-year-old mom (and new grandmother) from Tempe, Arizona, allowed a video crew from Mayo Clinic in Arizona to follow her on her journey.

MaryEllen  let the cameras roll during her medical appointments at Mayo Clinic.  Along the way she openly chronicles what it feels like to undergo chemotherapy and describes  how the medical treatments and medications affected her daily life.  She also lets viewers inside her genetic counseling session where she sought to find out if her triple negative breast cancer was inherited and the likelihood if she could ever genetically pass the risk of cancer on to her daughter and new granddaughter.

As this five-part series unfolds, MaryEllen also reveals her views on having to make herself a priority in her family, how she dealt  with losing her hair, how she overcame her fear of  a recurrence and how she takes care of herself now.

In this first episode, you’ll meet MaryEllen at her home as she recalls her reaction to her diagnosis and the fears that came with it.  

We hope you’ll follow MaryEllen’s videos  throughout October and early November on the Sharing Mayo Clinic blog and we encourage you to post your comments on the series or post a message to MaryEllen after each new episode airs.

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Mayo Clinic Pathologists Go Bald for Breast Cancer

October 1, 2010

Would you go bald for breast cancer? That was a question that Carol Reynolds, M.D., and Dan Visscher, M.D., Mayo Clinic pathologists, were happy to answer. And answering affirmatively allowed them to send a message of empathy to patients, colleagues, friends and family members who “bear the consequences” of a battle with cancer and encourage their colleagues to contribute to the cause. 

By going bald for breast cancer on Monday, Sept. 14, Drs. Reynolds and Visscher joined a movement among pathologists across the nation determined to raise awareness and research funds for breast cancer awareness month in October. 

The Mayo duo jumped on the bandwagon a month early because they were part of a team who participated in the Join the Journey walk for breast cancer awareness in Rochester, Minn., Sunday, Sept. 19. 

The fundraising clipper fest really took off when Gary Keeney, M.D., chair of Mayo Clinic’s Division of Anatomic Pathology, issued the following challenge: Top the $10,000 mark, and he’d go under the razor, too.

More than 60 colleagues piled into the conference room to see the news-making clips and show their friends some of their finer forms of empathy, which included shout outs, shared laughter and, considering Dr. Keeney’s temporary Mohawk as a result of raising $12,390, some very generous compliments.

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Irma Poznecki – Far from an “ordinary” mom

August 24, 2010

Inspiration comes in many forms – for Irma Poznecki, a 45-year-old mother of three from Anthem, Ariz., it was brownies and cupcakes.

In late 2009, Irma was diagnosed with breast cancer. The news came as an obvious shock to Irma who says she has always been active and healthy. And while she may describe herself as an “ordinary mom,” what she discovered over the next several months was something extraordinary.

The Brownies
Irma is a high energy, busy mom. She works as a substitute teacher and spends a good deal of her time shuttling her own kids from sporting and school events. She is also active in school activities and is president of a group which raises funds to buy school library books. If that isn’t enough, Irma is a leader of her daughter’s Brownie troop. In fact, it was during a Brownie meeting last fall when Irma received some unsettling news.

Following a mammogram and other tests, Irma was anxious to have her pathology results as soon as possible, and asked her doctor to call her with the results as soon as they came in. Her primary care doctor called her from home late that night to make sure she received her results.

“I happened to take my doctor’s call during our Brownie’s Christmas meeting and party,” Irma said. “I walked out of the room, was told I had cancer, and then had to return to the meeting with nine jolly eight-year old girls and most of their moms. I made it through without breaking down.”

After the meeting, Irma talked again at length on the phone with her doctor who thoroughly explained the diagnosis. The news was that she had a slow-growing form of breast cancer called infiltrating ductal carcinoma – the most common type of breast cancer which forms in the lining of a milk duct within the breast.

The doctors at Mayo scheduled a lumpectomy a short time later. Irma said she wasn’t worried because of the trust she had in her doctors, the support of her family and the fact that she is almost constantly in the company of kids.

“It’s amazing how kids feed the positive spirit,” Irma said. “I have to be there for my kids, the Brownies, my students … and it’s reciprocal with kids, they really kept me going and kept me from negative thoughts. I never had those kinds of emotions.”

The Cupcakes
Even though her life is extremely hectic and her dedication to her family is obvious, Irma has been able to do something she feels has helped ease her recovery – create some time for herself. She has always enjoyed athletics and early in 2009 she became involved in a local running club called The Cupcake Runners. The group – recognized on the streets of Anthem by their signature pink T-shirts – was formed by other moms who wanted the camaraderie of exercise. Irma certainly found that with the other “Cupcakes” and much more.

“Saturday morning, the time we run, is my time – just me – I don’t worry about anything else,” she said. “I don’t think I’d be as positive as I am if I didn’t have the Cupcakes.”

Irma says her time with the Cupcakes and having the balance has helped ease her recovery. At the time she was diagnosed, Irma had been training with several other Cupcakes to run an upcoming half marathon. While her surgery was scheduled just a few short weeks before the race, she was determined to run if she could.

Irma’s surgeon at Mayo Clinic, Richard Gray, M.D., says that with this type of procedure, most women can return to normal activities within a few days.
“Although I wouldn’t call training for a half marathon a normal activity,” he said

But Dr. Gray told Irma that if she felt up to it she could do it because exercise has an extremely positive effect on recovery. “…and it was remarkable how quickly she jumped back into it,” he added. “I didn’t think of this as something that would stop me,” Irma said, “it wasn’t even a thought.”

Discovery
Two weeks after her surgery, Irma crossed the finish line at the P.F. Chang Half Marathon in Phoenix. With her fellow Cupcakes cheering her on during the race, and her kids, students and Brownies inspiring her run, she discovered something extraordinary. “I never knew I had this in me,” Irma said. “And it’s good to know it’s there when I need it.”

Not bad for an “ordinary” mom.

A note about mammograms
Doctors discovered Irma’s cancer during a routine mammogram – one she almost didn’t have.

“During an appointment with Dr. Anne-Marie Warner, she noticed I didn’t have a mammogram on file,” Irma said. “She asked me to have a mammogram but stubborn me told her I’d do it when I turned 46 since I know that statistically my chance of getting breast cancer was minuscule. Plus, I thought about what an inconvenience it would be and how disruptive it would to my busy schedule.

“Thank God, she gently persisted and eventually convinced me to go for the mammogram last year. I will forever be grateful to her!”

Irma’s story was submitted by Jim McVeigh, a communications consultant in Public Affairs at Mayo Clinic in Arizona.

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Teen back in action after neurosurgery for spinal cord tumor

August 20, 2010

In early 2009, Josh Johnson’s parents thought their 14-year-old’s back was likely sore from a few falls he’d taken while snowboarding competitively. They live in Afton, Minn. and Josh spends his winters snowboarding and his summers wakeboarding. However, after a couple months of complaining, they knew it must be something more. Josh couldn’t even bend over to tie his own shoes! Physical therapy didn’t do the trick and his x-rays looked normal.

Josh’s family doctor wanted him to see a specialist, so they scheduled an appointment in the Twin Cities for three months later. Josh’s parents, concerned about waiting three more months, requested an MRI be done in advance so they could bring that along to his appointment.

The Johnson’s family doctor checked his MRI and immediately discovered a spinal cord tumor. Josh’s mom, Brenda, says they were overwhelmed and scared . . . not knowing what the outcome might be for Josh. Here’s the timeline of the next two weeks:

  • Monday, June 1st, 6 p.m. – The Johnson’s learned about the tumor from their family doctor.
  • Tuesday, June 2nd – Josh was seen at Mayo Clinic, told that his tumor was an uncommon spinal cord tumor (myxopapillary ependymoma), and that it had to be removed. Surgery could be scheduled for the following Wednesday.
  • Tuesday, June 9th – Josh had a full body MRI at Mayo Clinic, revealing one large tumor and another further down his spine.
  • Wednesday, June 10th – Josh had surgery at Mayo Clinic. Pediatric neurosurgeon, Nicholas Wetjen, M.D., and his team successfully removed both tumors.
  • Saturday, June 13th – Josh was discharged from Mayo Clinic, Saint Mary’s Hospital.

 This all took place in less than two weeks! Josh’s last two MRIs have looked great. Dr. Wetjen says that the recurrence rate is quite low, but ependymomas require long term surveillance imaging because they can recur late.

This past winter Josh was back on the slopes at Afton Alps, and he’s spent the summer wakeboarding and longboarding. Josh and his parents claim that his life was saved by Mayo Clinic . . . and it was done in record time!

Josh’s story was submitted by Elizabeth Rice, communications consultant in Public Affairs at Mayo Clinic in Minnesota.

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