Sarcoma Support in

   Wisconsin and other States

www.sarcoma-wi.com     

                                   Welcome         

Purpose

This page is for anyone that is currently going through treatment for any form of sarcoma, for survivors of sarcoma, for family members and friends or for anyone that is interested in this rare form of cancer. I started a sarcoma support group and a web page after I was diagnosed with sarcoma.  I used both as a way to meet other people that were dealing with this rare form of cancer. I launched the web page after talking to the family member of sarcoma survivor and then finding a site to host the page.

I started a Facebook group and invite you to join.  After you sign in, search for: Wisconsin Sarcoma Survivors.  It will allow us to find other survivors and offer mutual support.  For those who do not like social networks I would be happy to communicate with you by phone or email.

Let us band together to help one another with this rare form of cancer.

My story   

I found a painless superficial mass in the right lower leg in early January 2004.  It was located near the shin bone and about 6 inches up from the ankle.  The primary care provider that I saw referred me to an orthopedic surgeon who started a work up with x-rays and MRI and he referred me an orthopedic tumor specialist.  I eventually had a incisional biopsy taken from the mass in February 2004.  The biopsy was suspicious for cancer so a wide based excision of the mass was performed without disturbing the incisional biopsy site. There was a delay in learning the type of cancer that I had.  My tissues slides were sent to Boston for a second opinion.  I eventually learned that I had low to intermediate grade soft tissue malignant fibrous histiocytoma - spindle cell, not otherwise classified in late March 2004. This led to an evaluation by an oncologist and cancer surveillance with chest x-ray and CT of the chest, abdomen, and pelvis. Then I saw a radiation oncologist.and receive 6 weeks of high dose radiation therapy to the leg. It took about a year for the leg to fully heal.  Subsequent MRI's have not shown any evidence of disease.  I learned a few years ago that the title MFH sarcoma was changed to pleomorphic sarcoma not otherwise specified.

Share your story

Please contact me if you want to shares your cancer journey on this page.  

Maria Cantarelli's story

In September of 2008, on my youngest daughter's 3rd birthday, I was diagnosed with a rare soft tissue sarcoma (proximal-type epithelioid sarcoma) in my upper right thigh. I was told I was stage III already and was told that I may not be able to run or play volleyball again due to the size and location of the tumor-both of which would make surgery very difficult. After enduring grueling in-patient chemotherapy, it was found that my cancer was not responding and had actually grown larger by almost 3 cm. Not to be defeated, my doctors started radiation therapy which shrunk the tumor to a size more operable. The tumor was removed in January 2009 with almost no long-term side effects. I was able to run a 5k only 8 months after surgery! I am back to playing volleyball and running around with my kids again! Froedtert truly saved my life and for that I am forever grateful. ♥

Marianne Baer's story

I was diagnosed with a retroperitoneal liposarcoma. The tumor was in my abdomen and was the size of a volleyball. When I was diagnosed it was difficult to find any information to help me assist in the treatment decision that I was facing. The surgeons had different opinions than the radiation oncologist. At one point, I was told that I would never be able to have children because of the cancer. Since the tumor was so large, the decision was made to remove it before any biopsy was done. I am lucky the tumor was low grade sarcoma despite how large the tumor was. 18 months after removal my son Nathan was born. I am one of lucky ones the sarcoma has not come back. I am all for sarcoma awareness. I am also a breast cancer survivor for 3 years now. It saddens me to see so much attention and research dollars for breast cancer and not much for sarcomas. Sarcomas are rare cancers that do not get much funding or attention for research.

Sharon De Lozier's story

Hi, I am posting about my ES. The posting is from my 2005 surgery. I am 19 days out from, obviously, a more recent surgery at Massey Cancer Center in Richmond, Va. I will know tomorrow if the 2cm "mass" removed is a recurrence or a benign ailment and will follow-up in either event. My last two paragraphs below are important to what I am told tomorrow. Please read them. 

My story as a Survivor of Epithelioid Sarcoma, which at the time was just that, not Proximal or any other such distinction - other than the word "rare" being in my report 4 times from Harvard University, who finally put a name to this cell tissue- 3 other states had not a clue as they'd never seen such cell tissue. 

May 2005- I went to my GYN (of 25 yrs.) and told her to get that "cyst" out of me! That is what she believed it to be for over 2 years. 

I am going to be specific, in hopes you all will begin to be more so as well. 

I waxed my bikini line area, faithfully- I now, say Thankfully! As I ran my fingers along the inner thigh with Almond Oil, at that dip we have in the center of the groin area I felt a tiny lump one day. Some months later, while running my fingers along that same path, just as I'd always done after waxing, I felt that tiny lump was not quite as tiny. Into my doc I went, she examined me and said it was just a Sebaceous Cyst, nothing to worry about. Cool, I thought as I had enough going on. Many, many waxings later, as I continued my waxing routine, I felt a lump, it was now about the size of a large frozen pea and had it's very own kind of pain associated with it. Back to my doc. and again, she still thought it was a cyst and best to let it take it's course, it may just go away on it's own. I was not thinking 'cool' this time, but I trusted her, and by the way I still do. 

Over two years later and with pain so intense I could not sit to work at my computer long or even sit comfortably while driving, I knew it was time to get that 'cyst' out. She, my doc, agreed. She had me lie back and said "Let's get this taken care of, I'm going to aspirate it Sharon". I felt nothing, but when I saw her look up at me, I said "It's not a cyst, is it?". She had me in surgery the next morning, having not seen 'this' before she took biopsies to be sent out. THIS IS ALL THE IMPORTANT STUFF GUYS! She is an awesome GYN, she did not fail me in any way. The Pathologists in NC, SC and FL, I'm sure were very good at what they do and they did not fail me, they JUST HAD NO IDEA of what they were seeing. 

Two very LONG weeks later, the call from my doctor came at 7PM. Knowing I was going through a divorce she asked if I was alone, I wasn't. Her words were "Sharon, I have gotten pathology from Harvard University" (that alone made me fall into a chair) "Sharon, I want you to listen to me, OK? You're going to be alright, but you have an extremely rare, rare, rare, rare cancer". FOUR TIMES! she used the word rare, she was reading the report. She told me she had scheduled me with "THE BEST OF THE BEST in Gyn/Oncology" at UNC in Chapel Hill. Of course, she had to spell Epithelioid Sarcoma for me, but I wasn't about to look it up, I knew the worst of the worst is usually what is found on medical sites when looking for information and for me that was the right decision- I would have NEVER had the surgery had I read what I've read since! 

I had surgery at UNC on July 2nd 2005. My lesion was 1 cm, which was very good for me. No radiation, no chemo due to the size and in case of recurrence they want to have as much healthy tissue as possible. I have an 8" incision, front to back on my right groin area which is very deep. I had 1 'tray' of lymph nodes removed and they were clean, JP Drain was a nightmare though! My lesion was on my vulva and my surgeon was very careful, mindful in not 'maiming or disfiguring me' - he was great and I am extremely grateful to him for his care! He explained this is a slow cancer, one not to metastasize - rather to 'scatter like marbles' and he was ever so proud of his surgical skills in that my incision was barely visible, almost invisible today. He told me I was very rare, one of only 3 cases of record and the other two women had died, but they were elderly! I was NOT followed up with MRIs, which I am now finding I should have been. I am finding this is not 'slow' and does indeed metastasize. WE have to help EDUCATE all of these care givers. Right? Tell how you found your lesion (lump). 

!!** I made a comment on my post last week about finding a doctor without EGO and willingness to learn. I said that for this reason: I have the pain from my incision, I thought it HAD to be a new lesion. So, before moving from NC to VA my husband and I went to see my surgeon at UNC. My husband was appalled at the way I was talked to, but I was speechless at ONE comment this very fine surgeon made and it was this - "I read about your cancer when I first met you!". Al-be-it, his expertise is more in the GYN part of cancers, but what about reading what has changed from month to month in knowledge of ES, year to year even IF it's JUST one patient with such a cancer. 

Be wise and ASK questions of your doctors, please. I wish you each well. I wish you peace and most of all I wish you the strength to be positive in the dark. I am here to draw knowledge and strength from each of you, as there is always the 'wonder' in the back of my mind. If I can help someone, in any way, I am here for you!! ES Survivor

Received an email received on 1/13/2012 with a brief story from Sharon: She mentioned that she had surgery 1/12/2012 at MCV in Richmond, VA for a possible recurrence of ES of the vulva.  Had my first surgery in July 2005 at UNC in Chapel Hill, NC.  THANK YOU for what you are doing. You are doing what I had started to do, but we ended up moving to VA while I was in the info gathering process. I am thrilled to see you as "Survivor" (~.~).   I would love to share my story. I have that in my notes on Facebook. I need a few days to be able to think and write my story with clarity. You can find me on Facebook. The ONLY way to help educate all the doctors involved from the family doc, radiologist, and so on is for us to share information.  I'm going to try and round more people with stories for your web page. Best regards, Sharon De Lozier.

Noah Elmhorst's story -- submitted by his mother Jill

In July of 2009, when he was 20 years old, he had a little spot on his left knee that was bothering him. He went into the doc, had it x-rayed and they didn't find anything.(now I know the doc dropped the ball, i got his x-ray report this summer and it says there is a soft tissue fullness and some other stuff and an MRI should be done, this never happened) In Jan or Feb of 2010 it started to ulcerate. Noah tried to take care of it himself until April 13, he went into the ER in Madison where he was a junior in college. Then he called and told us. They again x-rayed it and told him it was fine, nothing wrong. I saw it 10 days later when we went for a visit for his birthday. I knew it was infected. It was about a 4 inch open wound, down to the fat layer and the ER said it was ok??!! We took him to an urgent care and he got treated for the infection. Multiple doctor visits in Madison and then Marshfield when he got home from school. All his blood tests were normal,except his glucose being low. I had mentioned cancer to everyone because he was also losing weight and every one just blew me off, his blood work did not show that. We were then sent to Dermatology and they tried to heal it all summer with steroid injections. He also had 3 punch biopsies that came back normal and I believe that doc did not go out far enough into the so called "normal" skin. At the end of July, it was decided he would have surgery to cut out the ulceration and skin graft it. He would be leaving for his senior year of college at the end of August. He had surgery on August 11. On August 19, 2010, at his first post-op visit, he got the results he had an extremely rare form of soft tissue sarcoma. Epithelioid Sarcoma. The cancer was found on this "outside normal" skin they cut out beyond the ulceration. Need less to say we were shocked and heart broken. The next day we saw an oncologist and he had a CT of his chest, abdomen and pelvis. Then the next Monday he had a PET scan and MRI. The results we got were that the CT was all clear, no organ or brain involvement. Thank God for that. Pet and MRI showed a couple of suspicious lymph nodes, but came back as normal after biopsy. We were immediately referred to Mayo, because of its rarity and location on the side of his left knee. Noah had 4 rounds of chemo, the first two in Marshfield in the hospital were AIM, with the Neulesta shot after(extremely painful for a week) and the next 2 at Mayo as an outpatient, which were doxorubicin, cisplatin and mitomycin. (all of this and we had a 19 year old also in college,an 11 year at home, a cat and dog, it was chaos just trying to figure out who would be where, who would be with our youngest, getting him to and from school and who could help out with pets. not to mention our jobs, luckily my job was very understanding and let me have off all the time I needed, but without pay, that was fine I just needed to go to Mayo for his appts and hospital stays from Sept- July) During the rounds at Mayo he also had 25 radiation treatments. All the while he was still in college. We did everything we could to keep him in school, because that is what he wanted. My husband took 5 weeks off from his teaching job to drive him back and forth every other day to Mayo and Madison. On January 12,2011 he had a very long surgery to remove 1/2 of his kneecap, much tendon, tissue, blood vessels and skin. They did get clear margins thank God. Things were going good, I spent some time in Madison getting him to and from school and then at his 6 week check, he had an infection in his leg. He then had 4 more surgeries to clean it out, remove everything they had replaced and then to replace everything except the tendon. He was in the hospital for 17 days. He still needs that surgery, but has chose not to do it yet. He can't pull his leg up, ride a bike or run. His left leg has a scar now from the back of his knee, down to his ankle, the upper part does not look like a normal leg at all. His right leg has skin graft sites at the upper portion and also has a scar from the side of his knee up to his hip where they took out skin, muscle, tissue, and blood vessels. The first time they used the lower left leg I just described above. Need less to say, he had to drop out his final semester of college. He was taking the last 2 credits for his physics major and the UW would not grant him those. We petitioned for 4 months. Noah did decide then to graduate in May with a Math major and Physics minor. As of July, his scans showed no cancer and his team of doctors ok'd him to go to China and teach. I was shocked. He left Sept 1. He is very happy there as far as we can tell. I believe he is just running away from all that has happened. He is choosing not to be scanned and that scares the life out of me. He won't tell me his reasons. I think he saw the stats of this disease and is thinking he just wants to live his life how he wants and be damned this cancer. I just want him to be happy, but want him to be responsible too. At 22, I am not sure he truly gets it. So, that is most of Noah's story and our journey. It took Noah 13 months to get the correct diagnosis. This is the norm as many of you know. I am in the process of starting a WI chapter of the Sarcoma Foundation of America. I need to do something to help my son and all of us.

Graham's story -- submitted by his wife

Her husband is currently being treated at Froedtert Hospital for clear cell sarcoma metastasis. The original tumor was in his left thigh and was removed in October 2011.  In December 2010 I noticed that his left inner thigh muscle right next to his groin was larger than the other one. He swore up and down it wasn't and I asked if it was his skateboarding leg (as a joke). He thought nothing of it. In April 2011 we went for our annual physicals and our Dr. recommended an MRI. Three days later (April 15), while working he thought he hurt his hip and was limping. My husband is the cheapest man on earth and didn't want to pay the $100 ER co pay, but after about 2hrs he said the pain was too much. We went to St. Joseph’s in West Bend. I told the ER that our Dr. suggested an MRI so they did one. The ER Doctor came in and said he had a sarcoma and needed to schedule a biopsy and sent him home with crutches. We were later told that Dr. was amazing because most ER Drs wouldn't have a clue what a sarcoma was. We went to a Dr. in Hartford (Dr. Lau) and she said we needed a team and she didn't even want to do the biopsy, and called Dr. Hackbarth at Froedtert. After the biopsy and some scans at Froedtert we were told it had already gone to his lungs. May 9th he started 3 rounds of ifos/doxy. His oncologist is Charleson. It was pure hell. The lungs were stable but the leg was getting bigger. He then went through 5 weeks of radiation to the leg. October 6, 2011 they removed the tumor in the leg. The surgeon said he removed about the size of a football. (tumors apparently are related as sports equipment They removed muscle and bone as well. The tumor was also touching part of his pelvis and had cracked off a piece. He had a skin graft and spent a total of 11 days at Froedtert. Since there is a 6 round lifetime max on ifos/doxy we knew we needed to find another treatment. We were given 2 options and chose the trial Yondelis. He was scanned after the 2nd round and it showed the lung nodes to have SHRUNK! He will take round 4 on Monday. The largest lung node is approx 45cm by 65cm. He has somewhere between 10-20 but that is the largest by far. We are hoping for removal of that one at the very least, but not sure as to when that would be a good time, and really don't want to stop the Yondelis if it is in fact working. He was 28 when diagnosed with Stage 4 poorly differentiated clear cell sarcoma. He turned 29 on January 12.

Get involved with sarcoma research

Sign up to help with a sarcoma research project.

I did and I encourage you to do the same.

https://www.23andme.com/sarcoma/

Get involved with Sarcoma Foundation of America

Congratulations to Jill Elmhorst as he is the new Wisconsin Sarcoma Foundation of America Chapter Leader.

Check out the SFA Facebook page for more information and select 'like' on the articles of the page  

Jill encourages everyone to call their state representative on Feb 29, 2012 regarding the ULTRA Act

"Unlocking Lifesaving Treatments for Rare-Diseases Act"

We encourages sarcoma survivors to be part of the SFA Tumor Registry.

They are looking for data on sarcoma patients to compile.

You will be asked to release your medical records to the.

Special Event for Sarcoma Survivor in Milwaukee, WI

Froedtert Hospital, Medical College of Wisconsin Bone and Connective Tissue Cancer Program and Children's Hospital of Wisconsin Sarcoma Program on 2/29/2012. sarcomaeventflyer