NEWS: Michigan plans Adult Sarcoma Survivorship Program

By Suzie Siegel

The University of Michigan Comprehensive Cancer Center in Ann Arbor is fine-tuning an Adult Sarcoma Survivorship Program to deal with severe and life-threatening illnesses that arise at least two years after surgery, radiation and chemotherapy have been completed.

Dr. Larry Baker

“Survivorship care is an emerging priority in cancer care,” says Professor Laurence Baker, DO, a renowned sarcoma medical oncologist. He says the interdisciplinary program will be the first of its kind in the United States.

Sarcoma treatment can increase the risk of illnesses such as high-blood pressure, heart disease, type 2 diabetes and kidney failure later in life. It’s a hollow victory if physicians help cure the sarcoma only to have a young patient die of a heart attack a few years later, Dr. Baker said.

His program will be open to survivors between ages 18 and 50. For some, it will serve as a transition from pediatric to adult care.

At this time, it will not treat issues that are not life-threatening, such as infertility or psycho-social difficulties.

Patients will meet first with a sarcoma medical oncologist and get a comprehensive exam. The program will monitor their health, working closely with their primary care physician, other referring doctors and specialists, Dr. Baker said.

The program also will contribute to research into survivorship issues. Prospective patients can call 1-800-865-1125 for more information.

Dr. Baker spoke last month at a dinner for patient advocates organized by our executive director, Arthur Beckert. He said the Sarcoma Alliance recognizes the importance of survivorship issues and plans to expand its information on the subject next year.

The dinner kicked off the annual meeting of the Connective Tissue Oncology Society in New York.

This post is part of a series on CTOS.

To learn more about Sarcoma Alliance or donate to our mission of supporting those affected by sarcoma, please visit our website.

PATIENT STORY: Brianne Simpson

Brianne Simpson

Another addition to our series of interviews with those affected by sarcoma. You can read all of the stories here.

I remember my first introduction to Brianne. It was a picture of her leg. Nice to meet you, Brianne.  (She'd included the picture of her leg with one of her very first Facebook posts.)

That was months ago and I've since learned that my first impressions were correct - she is strong, proud, and going places. I've also learned that there is so much more to Brianne. She cares deeply for others, she is open, she is vulnerable.

This is Brianne's story . . . 

How old are you?

I’m 19 and will be 20 in January.

Where do you live?

Ottawa, Illinois. I live at home with my mom, dad, little sister, and three dogs.

Tell us a little about yourself.

I’m not married and I don’t have kids – well, unless you count my puppy. I have three dogs, two boys and one girl. I love them to death!

I’m a full-time student at the local community college. I’m majoring in Early Childhood Education with Special Education and Clinical Psychology.

What is your sarcoma diagnosis?

Synovial sarcoma in my right knee.

In what year were you first diagnosed?

I was diagnosed on December 20, 2012.

Have you had surgery, chemotherapy, radiation treatments, something else?

I had surgery to remove my cancer and then I underwent 33 radiation treatments.

What is your prognosis?

It’s good. They were able to remove all visible signs of the cancer from my knee when I had surgery. The radiation I had after was to make sure everything bad stayed away. As for right now, I’m in remission, and I’m thankful for that every day.

"You can't give up hope when you're fighting against something like this."

What is your biggest piece of advice for someone who is newly diagnosed with sarcoma?

Wow . . . that’s a loaded question. I’d have to say the best pieces of advice I have is to always have faith. You can’t give up hope when you’re fighting against something like this.

There are going to be days when you feel miserable, but if you can keep your hope and faith, and put yourself into a good mood, it will make things easier and help you get through it.

And another thing . . . don’t be afraid to ask for help. The people who love you want to be there for you.

How are you feeling today?

I’m feeling pretty good today. I finished my treatments in April, and I’ve been recovering since then.

My leg has healed. The mental part of things is what I have the most trouble with lately. I’ve had a few scares while I’ve been in remission, but things have come out clear for me so far.

Tell us your diagnosis story.

My story started a few years before I found out about the cancer. I fell a few times between 2009-2012. I went to the doctor and they all told me I’d be fine. I used crutches and went to physical therapy like they told me, but my leg never got completely better.

So, finally, in 2012, my family and I started pushing the issue. We went to a knee specialist near our town and they told me I was fine and that things were in my head and told me to take ibuprofen. I did what they said for a while before going back and telling them it wasn’t any better.

They finally ordered an MRI and then things really took off.

I had 4-5 MRIs in a week and was then sent to an orthopedic oncologist specialist seventy-five miles away in Chicago. At that time, they still didn’t think I had cancer. I had a few appointments with the specialist and a biopsy was scheduled.  The biopsy was a failed attempt because even after they numbed my leg, I could feel everything they were doing.

The decision was made to remove the mass. I had surgery on December 20, 2012, and that was the day I found out I had cancer. My oncologist/surgeon came in and explained that it was a cancer called synovial sarcoma.

I don’t think I realized what that meant at the time. After the doctor left the room, I asked my mom, “Does that mean I have cancer?”

I remember looking around at the family that had come with me to the hospital – my mom, dad, and two of my aunts. I could tell they had all been crying, and that scared me because I’d rarely seen them cry.

I remember thinking that I didn’t want to lose my hair. And then I remember thinking that I didn’t want to die. I was too young and had too many plans.

I was scared. Terrified. But I tried not to let it show. I wanted to be strong for my family. I wanted to be strong for myself.

Brianne (R) with her younger sister
"We never talked about the worst-case thing that could happen with her around"

What about your sister?

She was 11 at the time of my diagnosis. It’s hard to tell what she really thought about it. I’m not sure she fully understood. We didn’t lie to her – my parents explained to her that I was sick and that it was serious. I think we all sheltered her from it as much as possible because it scared her. We never talked about the worst-case thing that could happen with her around.

She was always trying to help me when I couldn’t do something for myself. She’d make me laugh by doing something dorky.

I feel guilty because I was getting so much attention from everyone and she wasn’t getting as much as she used to. She’s the baby of the family.

She never once complained about the lack of attention. Not even when I had to miss her first basketball game for an appointment. She said it didn’t matter and there would be other games.

My sister is a trooper. She’s a good kid, and I love her so much. I never forget to hug and kiss her goodnight anymore.

"I had to face reality; I was a cancer patient."

Tell us about the radiation treatments.

Radiation is when things got real for me. Up until that point, I could pretend that I didn’t have cancer. After I started radiation treatments I had to face reality, I was a cancer patient.

I went to radiation five days a week for 6.5 weeks. My days got to be pretty routine: get up, head to radiation, go home, get ready and go to school, go to work, and then pass out from exhaustion. There were times that I couldn’t go to work and some days I would miss school and sleep all day.  Radiation sucked.

I met some amazing people at radiation. There was an older couple there every day at the same time I was there. They call me their adopted granddaughter now and I love them.

What side effects of treatment have you had?

I was exhausted. I hated to get out of bed most days, and I missed so much school. I was in my first year of college and I was lucky that my teachers were as understanding as they were.

My leg burned something fierce because of the radiation. The treatments split my freshly healed surgical scar open and burned the heck out of my leg. The pictures my mom took to document everything are gruesome.

"I fought for my life and won."

You have scars. Tell us your philosophy about them?

Ahh. My scars. I love my scar. It isn’t something I’m ashamed of. It’s big, and it’s ugly, yes. But it’s part of me and it tells a story.

I fought for my life and that scar is proof.

I don’t mind that people stare at it when I wear shorts. I like when people ask about it. I’d rather that they stare and then ask about it rather than stare and awkwardly look away when I catch them.

I get a lot of looks at school. I can feel when people’s eyes are on me, but I’ve gotten used to it and I’m not self-conscious of my scar like I thought I would be. It’s my battle wound.

I fought for my life and won. Why be ashamed of the evidence of that fight.

And what about your emotional scars? How are you doing?

The anxiety, depression, post-traumatic stress disorder (PTSD), that’s what’s been tricky for me. The PTSD isn’t something I’ve been diagnosed with. But to be honest, after cancer, I don’t think you need a psychologist to tell you that you have it. You just know you do.

I’ve considered seeing someone, but that kind of thing is expensive and I don’t have insurance. I’m don’t get nightmares, but I get the overwhelming emotions of fear and helplessness. It can get in the way of everyday things sometimes and it can change my attitude and point of view in a second.

It’s hard to deal with. But I have to. I won’t let it rule me.

I toughed it out by myself for awhile, but around the time of my scans, I get such bad anxiety, it’s not possible to hide. They know I get scared and stressed and anxious. I take anxiety medicine at night to help me sleep when I need it.

I think this kind of thing probably gets better with time. But for me, it’s all still fresh.

More recently, my other leg has begun to bother me, which causes all kinds of panic and anxiety. It’s hard to sort my emotions. I’m not sure how much of it is psychological.

Was (or is) your life on hold while you work through your illness?

My life was definitely on hold. But at the same time, I was always trying to push forward. I didn’t want my life to stop completely so I continued working throughout most of my treatments – only taking a leave of absence when I just couldn’t do it anymore.

I continued with school, too. Even though I missed a lot of classes, I pushed through and I’m proud of myself for that.

A lot of my emotional relationships went on hold, though. I was afraid to make new friends because quite a few of my old ones had stopped talking to me. They didn’t know what to do with me, or what to say, so they said nothing and disappeared.

It’s gotten easier to make friends. Though I still get that look when they find out I was sick.

What is the funniest/strangest question you’ve been asked about your illness?

People asked me a lot why I didn’t look sick. They assumed that because I hadn’t lost my hair, and because I looked healthy, that I wasn’t sick. They didn’t understand that just because I was trying to smile and be happy and positive, and because I looked healthy enough, that I was really sick and exhausted and had no energy for anything.

What is your hidden talent?

They call me the Child Whisperer. Haha. I’m really good with kids. I love working with them, and teaching them, and being around them. They’re so sweet and just perfect.

After we'd completed the interview, Brianne had an MRI to look at the trouble with her left leg. Here's what she told me. "The MRI results came back, and it isn't cancer. I have a torn meniscus in my other knee now . . . I'm just thankful it isn't something more serious."

Keep in mind that Brianne's story is just that - her personal story. Nothing here is meant to be medical advice (see your own doctor for that) and the attorneys like me to remind you that her views are not necessarily those of Sarcoma Alliance.  (Though we do believe in being thankful for good test results.)

NEWS: Meeting Details Latest Sarcoma Research

Doctors examine studies on posters at CTOS.

By Suzie Siegel

The New York City marathon of sarcoma research ended this month, and we will have a series of reports on it.

The annual meeting of the Connective Tissue Oncology Society drew 815 people, making it the largest gathering of sarcoma physicians and scientists that the world has ever seen.

No reporters showed up, even though I sent out PR and begged everyone I know in the area. (I was a newspaper reporter and editor for 18 years before being diagnosed with leiomyosarcoma.) This illustrates the importance of patient advocacy in getting the word out about trends, ideas and research not yet published.

Michael Leahy, MD, a medical oncologist for the Greater Manchester and Oswestry Sarcoma Service at The Christie in England, tweeted the photo above. We were among a handful of people tweeting from the conference.

Dr. William Tap

This was my seventh CTOS meeting. When I lamented my inability to understand some presentations, William Tap, MD, said he didn’t understand everything either. That’s really saying something since he’s the section chief for sarcoma oncology at Memorial Sloan-Kettering Cancer Center in New York. But the inscrutability was a good sign, he said. It indicated that the meeting was more multidisciplinary, with more on biochemistry and genetics.

As scientists and physicians search for more targeted treatments, they continue to revise subtypes.

Dr. Picci

For example, Piero Picci, MD, director of the Experimental Oncology Laboratory at the Istituto Ortopedico Rizzoli in Bologna, discussed a retrospective study of spindle-cell sarcomas of the bone. Of the 400+ cases, more than 100 had to be thrown out because they would be categorized differently today.

When cases were reclassified, the study indicated that patients whose leiomyosarcoma started in the bone did worse than those in other categories. Chemotherapy given before surgery seemed to help more than chemo afterward, Dr. Picci said.

He also suggested that synovial sarcoma be reclassified because it doesn’t arise from synovial tissue.

Dr. Jon Trent

"He presented not only a reclassification of spindle-cell sarcoma of bone, but he also presented which patients benefited from chemotherapy and which types were less likely to benefit. There was a lot of data that will help us manage patients," said Jonathan Trent, MD, PhD, who directs the Sarcoma Medical Research Program and co-directs the Musculoskeletal Center at Sylvester Comprehensive Cancer Center in Miami. "To me, it was the highlight of CTOS."

Sosipatros Boikos, MD, medical director of the National Institutes of Health's Pediatric/Wildtype GIST Clinic, presented a multi-institution study of gastrointestinal stromal tumors without KIT or PDGFRA mutations.

The study found the tumors could be divided into three groups. Two resembled the traditional, adult GIST. The other one was different and SDH deficient. Dr. Boikos now refers to wildtype GIST as SDH-deficient GIST, and the audience seemed to agree with the new term.

‪A study by the Royal Marsden Hospital in London found that the spread of solitary fibrous tumors (SFT) is more predictable than thought. Angelo Paolo Dei Tos, MD, director of oncology and anatomic pathology at the General Hospital of Treviso, Italy, suggested that physicians no longer use the term “benign SFT” because it can metastasize, although at a lower rate than “malignant SFT.”

For more information, see my previous post on reclassifying sarcomas.CTOS has summaries of papers and posters at: http://ctos.org/2013%20CTOS%20AM%20FP%20Complete%20LRRev1030-Large.pdf Searching by your subtype is an easy way to plow through the information, but keep in mind that some summaries don't mention particular subtypes.

Suzie Siegel is a former journalist and longtime Sarcoma Alliance volunteer. The views represented here do not necessarily reflect those of Sarcoma Alliance and nothing here should be taken as medical advice.

PATIENT STORY: Nancy Newsom Ridgway

Nancy Newsom Ridgway

This is the second post in our series of interviews with those affected by sarcoma. You can also read about leiomyosarcoma survivor Liselle Reppert.

If you're interested in participating in this series, please contact us to get the ball rolling.

Nancy Newsom Ridgway is a Texan and she does what it takes to get the job done.  She's a gentlewoman who never has an unkind word to say, but no one would ever call her timid. Nancy is strong and passionate about  family and God.  She is a wife, niece, parent, grandparent, great-grandparent - and she's a survivor. 

This is her story.

What is your sarcoma diagnosis?

Malignant Fibrous Histiocytoma (MFH), but they have changed the name of that type to Undifferentiated Phleomorphic Sarcoma.

In what year were you first diagnosed?

April 30, 2009….unforgettable!

Have you had surgery, chemotherapy, radiation treatments, something else?

I had surgery (resection and excisional biopsy) to remove a left quadriceps mass / medial margin left quad mass in the muscle.

They did the biopsy directly before the surgery and then proceeded with the surgery, and the surgeon got clear margins around the mass. They immediately took me for a chest x-ray after surgery to see if it had metastasized to the lungs (it had not).

I followed up surgery with 6 weeks of radiation every day. I had a wonderful doctor for my radiation, and I didn’t get much of a burn until the last week. I put pure aloe (no alcohol) on and it really helped. They gave me a lotion to use as well.

Had you heard of sarcoma before you were diagnosed?

When I was going in for the MRI with the lump on my thigh, I started researching and knew right away that sarcoma might be a possibility. Until then, I had never heard of it.

After having the first MRI and then getting the results to take to my oncologist, I looked up that photo on my MRI and compared it to one online of a sarcoma – they looked the same. I was sorry I looked it up!

What is your prognosis?

I am now 4.5 years out from my sarcoma, and so far all tests have been NED (no evidence of disease). They don’t really say remission now…it is NED.

I feel good about it, and at the same time I don’t take it for granted…and I know that it could come back. I have a really strong faith and if it does come back, God will be right there with me. I am thinking positively and if I make it past the five year mark, I understand that will be really good…not a guarantee, but really good.

I am very hopeful…and I pray a lot.

How old are you?

I am 63 years young!

Tell us a little about you.

My husband and I have lived in Texas most of our lives. We went to the same high school and have been married for 46 years. He has been my biggest support through cancer, although my family and friends have certainly all been there for me too.

We have two daughters, one is a nurse and the other teaches medical coding and works for a bunch of doctors. I have four grandchildren and two GREAT grandchildren. They are all very precious and special. My family and friends are my biggest blessings!

I also have two poodles who rule the roost here. I spend a lot of days letting dogs in and letting dogs out. I have a cat we adopted named “Bubba” (who has an identity crisis and thinks he‘s a poodle).

I was a florist in Fort Worth for many years at one of the largest florists in the USA at that time. Many holidays we would work into the night or all night long so Mothers and sweethearts all over the world could get their flowers on time. I chose to quit that job to take care of both of our Moms who needed help as they got older.

What is your biggest piece of advice for someone who is newly diagnosed with sarcoma?

Get a second opinion and go to a sarcoma specialist…maybe a third opinion if you aren‘t satisfied. I don’t regret getting all the opinions I could get because it helped me make a more informed decision. You have to be your own advocate.

Keep track of every test and everything in a notebook!

It's probably best not to believe everything you read on the internet about sarcomas! 

Always keep a sense of humor…you will feel better all around for it and you can always find something humorous.

"The surgeon herself even said it was probably a lipoma..."

Everyone has a diagnosis story. What is yours?

 I had this place in my thigh for months before it was diagnosed. It hurt. My rheumatologist looked at it before it was growing so large and he told me to put heat on it, and then my primary care physician thought it was probably a lipoma…I mean that was the obvious thing to think I suppose, and I don’t hold it against either of them for not knowing what it was!

The surgeon herself even said it was probably a lipoma and possibly a sarcoma. The sarcoma was most unlikely of the two…I get that. After several months of this, I had an MRI, then I saw the orthopedic oncologist and had surgery which showed it definitely was sarcoma.

Following the first MRI/surgery on my thigh, my oncologist thought I should have chemo and then radiation, and referred me to MD Anderson for a second opinion.

My surgeon, who was an orthopedic oncologist, said she would do radiation only, because of my already low white cells, which was (and still is) an ongoing problem. When I went to MD Anderson the first orthopedic oncologist I talked with told me he agreed with the radiation only, but when he talked with other doctors, they decided chemotherapy followed by radiation would be the better choice.

I asked them about the radiation-only option and they said that was my decision, but that without chemo the sarcoma would probably come back with a vengeance within 5 years. This was a very tough decision for me, and I didn’t want to do the wrong thing of course, or go against anyone’s best plan for me. I knew I was taking a chance, but I did have two oncologists and a radiologist all of whom thought 6 weeks of radiation would be enough for my treatment, so that is what I chose to have. 

My decision was right for me. I mean the final decision is ultimately up to us, and I had so many varying opinions, it was extremely confusing to me at that time. These are our bodies, and our choice…and heck yes, I wanted it not to come back….and my gut instinct was to go with the radiation only and a large part of the reason was because of my already low white count...and with chemo it would have plummeted.

My radiologist agreed with my choice, and said he thought I made a wise decision.

My husband and I had moved from the city to the country to retire. Six months after we got to the Texas countryside, I was diagnosed. I drove myself into town for radiation every day -an hour there and another hour home for those 6 long weeks.

How long did you wait to tell family/friends about your diagnosis?

I had part of my family in the waiting room when I had my surgery, so I didn’t have to tell them, the surgeon told my husband and some others, as I was waking up from anesthesia…and as in any family word spread pretty quickly I suppose.

How are you feeling today?

Today I am feeling great and I am 4.5 years out this month! I am very thankful to be alive and every morning when I wake up I am grateful.

My thigh still hurts a little bit to the touch. I still have tests regularly…having them this week and next as well. I hopefully will be able to tell MD Anderson things are still going well when I send back their questionnaire. They keep track of all of their Sarcoma patients.

I do have “survivors remorse” and I feel great remorse for friends who haven’t had it so good, it really grieves me that some of my fellow sarcoma patients keep having to fight it every single day. I really do care about all my sarcoma family and I keep them in my heart and my prayers.

　

"I have met so many wonderful, courageous, and caring people..."

Sarcoma diagnosis is a terrible thing, of course, but have there been any hidden blessings?

I have met so many wonderful, courageous, and caring people through having this cancer…and it is strange that blessings can come from being ill, but they clearly have.

I don’t know what I would do without my friends at Sarcoma Alliance.  They are funny and insightful and inspiring, not to mention courageous.

We all share this common bond…not the kind of bond we would have asked for, for sure, but there it is…and we all make the very best we can of it.

What keeps you inspired / motivated?

I love people and I like to do things for other people. Sometimes I go on overload…but I have always found I get back way more than I put in.

I totally love my volunteer job at Sarcoma Alliance and everyone involved is so sweet and kind. I have seen members go to the ends of the earth to get information when a friend needs it, and in helping someone new learn more about the things they need to know.

Music always inspires me as well…my family is musical and many of us play instruments. I love, love, love, to all get together to have music time. My brother used to play the keyboard professionally. My Aunt was a strings/orchestra teacher and she plays the violin beautifully, and even I dabble on the keyboard...and we all sing, some much better than others.

Nature truly inspires me too…always changing and always something new each day. I love animals and birds! I enjoy photography and all kinds of arts and crafts and painting. I love to travel… and have been to many foreign countries and I love bed and breakfasts because you can really get to know something about the people/cultures that way.

What is your favorite (clean) joke?

This teacher asked some children in a classroom to draw something really special to them…anything they wanted to. The teacher was going around the room and checking each one out and when she asked this little girl what she drew, the little girl said, “God”. The teacher said, “No one knows what God looks like“, and the little girl replied, “Well, they do now!”

If we came to your house for dinner, what would we have?

No telling…depends if I am in a hurry or I have a lot of time, if I am on my diet or if I am slacking!

I love to cook…and it would probably be Mexican food. My family loves my chicken enchiladas with sour cream sauce on them, or fajitas, beans, Mexican rice, and homemade guacamole with fresh cilantro in it. 

Nancy had her most recent MRI and CT scans after we'd completed the interview you just read. She told me the news was, "good and bad."  The lung CT showed some changes and her oncologist suggested another look in January. Nancy will be sending the results off to MD Anderson for another opinion.  Here's what she had to say about it, "...that's sarcoma for you...you have to stay on your toes with it and I am hopeful this is not sarcoma...but that being said, as a sarcoma patient, we have to be vigilant."

 Keep in mind that Nancy's story is just that - Nancy's story and experiences in her own words. The viewpoints expressed here do not necessarily represent those of Sarcoma Alliance and should not be taken as medical advice, though we fully endorse seeing sarcoma specialists and getting second opinions.