Diagnosed with sarcoma? Let's share

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi’s sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let’s get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Liked by Dee

@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I’ve had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I’ve found much support on the sarcoma support groups on Facebook.

Jump to this post

What I've learned during the last 6 years:*The actuality of my situation is rarely as awful as my imagination.*There is always reason for hope. What you hope for may change but there is always hope.*Dont believe everything you read on the Internet about your prognosis. Often, what you read on the Internet is best case or worst-case. We are rarely best case or worst-case. *When your situation is hardest remember that you can get through the next 60 seconds. Break it down as much as you need to. *If you are working with Mayo Clinic, you have world renowned doctors who see Sarcoma daily in your corner. Make certain you are at a sarcoma center. A regular oncologist may only see one or two sarcomas in their career. *Don't ignore your mental health. Ask for help getting through treatment and the fear following treatment. There are options. 

REPLY
@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I’ve had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I’ve found much support on the sarcoma support groups on Facebook.

Jump to this post

@kathythornjohnson What a wonderful reply to my asking you for some words of encouragement/advice to others dealing with sarcoma. You have covered many of the situations that we all encounter when we deal with a chronic illness, but especially those with sarcoma. Thanks so much! Teresa

REPLY
@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I’ve had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I’ve found much support on the sarcoma support groups on Facebook.

Jump to this post

@kathythornjohnson, Good Monday Morning. Thank-you for sharing your words of encouragement and wisdom. I am visiting you from the Transplant discussion group, to say that your beautiful statement is a testimony of hope for all of us.
Blessings to you as you continue your health journey’
Rosemary

REPLY

I hope it’s ok for me to post- my husband had a sarcoma and I was his caregiver. He was diagnosed at age 39 in 2009 with a stage 3 “Ewings-like” sarcoma on his left leg near his knee & luckily with no bony involvement.
It took longer than usual for diagnosis since it wasn’t exactly Ewings. I think they explained that it had slightly different DNA.
Finally they decided to say Ewings ‘like’ and treat it as such.
We lived in Dallas at the time and saw 3 Dr’s. We decided to go to Mayo (Rochester) for another opinion. We were most comfortable with the doctors and approaches there. The most important part was surgery to get clear margins. Several doctor friends gave advice that since this is such a rare cancer, he needs to find a top surgeon who has had many, many experiences with treating sarcomas.
His team made the plan for him to do several rounds of chemo (he was considered young in cancer years so he had a rigorous pediatric regimen), 5 weeks of radiation, surgery to remove the tumor, followed with several more rounds of chemo which was 10 months total treatment.
His oncologist was fantastic. He worked closely with our oncologist in Dallas so we could stay at home for treatment. We lived in Rochester for 5 weeks with our 2 daughters during radiation, followed by the surgery.
He finished with 6 rounds of chemo at home and finished in May 2010. We have always come back for check ups so his doctors could use their equipment, radiologists, and have their eyes on him. Not super practical to go back and forth, but cancer isn’t very practical! 😉 I hope that helps!

REPLY

@suzanneb I’m so glad that you entered into this conversation! Sharing your husband’s story adds to a sense of optimism and hope that is available to us all dealing with rare types of cancer, but especially sarcoma. Finding the right hospital system and doing that which was not practical was very good for your family, congratulations on the good results! Teresa

REPLY
@juzme88

My name’s is Helen and I finally have been diagnosed with Dermatofibrosarcoma Protuberans. My turnour is very large measuring 6″x4″ and approx 1 1/2″ bubbled out. It is located at the bap of my neck with the top a fingers width from the base of my skull. For 3 1/2 yrs I’ve been misdiagonesed with a keloid and have been receiving corazone shots every three weeks. My tumour has easily tripled since the injections started. Once properly diagnosed things moved quickly. My results from two deep biopsies came back positive June 4 this year and I’m waiting a surgery date in Toronto, ON. Hoping for the best at this point. Thanks for the connection !!

Jump to this post

Good that scans have been done, but be aware that scans pick up the central tumor but often don’t show the fine infiltration lesions that extend out from the central mass. They do give your surgeon a good grasp of the size of excision and what reconstruction is required. The reason I have asked about the variant, is that there is one more aggressive variant that generally requires a more aggressive approach to surgery. Typical Margins in WLE are 2-3cms, but for fs-dfsp the recommendation is closer to 5 cms. I would certainly ask for a copy of the path report once completed. I also suggest a direct discussion about the follow up required post surgery. The type of variant will influence follow up reviews process as well.

I know of at least two or three others with dfsp treated in Toronto as well as a few more across the lakes to the south. Happy to pursue contact if you wish. Can facilitate details by private message if you want someone local to discuss with. I also know a number of dfsp’ers treated at Mayo. Dr Randall Roenigk has a short video on dfsp. An experienced surgeon with plenty of experience in dfsp from your children to adults.

REPLY
@skyrage

I was diagnosed two years ago with Dermafibroprotuberans Sarcoma (dfsp) and honestly, I can’t even spell it correctly! It’s so rare that I can’t even find a doctor who knows much about it. The best thing about it is being called a “unicorn.”

Jump to this post

Hello skyrage, and good to hear the unicorn reference! From one unicorn to another, hope your doing well and remain free of dfsp forever more. What region are you from?

REPLY
@juzme88

My name’s is Helen and I finally have been diagnosed with Dermatofibrosarcoma Protuberans. My turnour is very large measuring 6″x4″ and approx 1 1/2″ bubbled out. It is located at the bap of my neck with the top a fingers width from the base of my skull. For 3 1/2 yrs I’ve been misdiagonesed with a keloid and have been receiving corazone shots every three weeks. My tumour has easily tripled since the injections started. Once properly diagnosed things moved quickly. My results from two deep biopsies came back positive June 4 this year and I’m waiting a surgery date in Toronto, ON. Hoping for the best at this point. Thanks for the connection !!

Jump to this post

Helen, I have reached out to some friends in the area, and been told their treatment options included, Mt Sinai Sarcoma Unit, another suggested Dr Jay Wunder. Also been told the Woman’s College has 2 MOHs surgeons.

For anyone looking for inspiration heading into or post surgery, watch the Ohio edition of American Ninja 2017. Participant Annika Nieshalla is a dfsp survivor who lost a large portion of the muscles in her upper arm to dfsp surgery, A gifted performer who also has her own web presence. Search Annika Nieshalla’s dfsp sarcoma page to see some of her work around the gym and in Parkour centres.

REPLY
@me67

In October of 2016, after a 3 week vacation hiking the National Parks, I discovered that my right leg was swollen with a rash and redness. I went to my primary doctor who suggested I go and see if I had a blood clot. No blood clots. I proceeded to see a podiatrist thinking I had broken or sprain my foot. ( I have a high tolerance for pain). I had an EKG and a vein mapping done. I had CT scan that showed a tumor in my pelvic area. I even had a small surgery from a DR.James. Cooper that was unnecessary. He had told me that he could open me up and find out what this tumor was. He misled us. He told me a needle biopsy would only be a 50/50 chance of showing what this tumor was. Come to find out – he was wrong. After the minor surgery, the doctor told me he could not see the tumor and the biopsy of one lymph node was negative. I decided to have an MRI and again the tumor showed up in the pelvic area.
I finally broke down and went to a cancer doctor who recommended a needle biopsy. This is when they determined that it was a pleormorphic sarcoma. I knew NOTHING about sarcomas and started researching. After going to another surgeon and a vascular surgeon, I decided that I did not want to create my ow team of doctors and that I needed radiation when I was having the tumor taken out. The only ones to do this type of radiation is Mayo. It so happened that this second surgeon could facilitate to get me to Mayo. We decided to take this route.

I feel very fortunate that I was admitted to Mayo very quickly. It was determined that the sarcoma had started in the soft tissue and was leiomyosarcoma, I had to redo my research. Because my tumor was under 5 cm. I had a good chance of making it. I immediately felt that everything was going to turn out good and I keep my spirits up the whole time. I shared my thoughts with a lot of my friends and family on Facebook, thus the constant positive feedback.

I took 5 weeks of radiation through Mayo Clinic. (25 treatments in two different areas of my hip). I can tell you that the making of the mask for my radiation was the worse part, but otherwise things were great. I went to the gym 3 times a week and rode the bike for about 40 minutes each time. It helped with the fatigue. I only felt tired one day and after the gym, it went away. I have a slight discolor in the area of radiation. Still I kept my spirits high.

I had my surgery on June 6, 2017. I am 67 1/2 years old. I was in surgery 8.5 hours and recovery for 3 hours. The radiation had killed 20% of the tumor. I had 8 doctors in the operating room with me. The surgeon was able to take the small feelers from an artery and pul it from my iliac vein. The tumor scooped out nicely with ‘clean’ margins. It had grown from 3.5 cm. to 5.2 cm in that small amount of time. I am glad that I did not know that. The vascular surgeon was able to take the tumor away from the main vein and repair the vein. No one knew what they would actually find once they opened me up. They thought I would have to have the main iliac vein cut and grafted from another vein, but I was fortunate that we didn’t have to have that done.

I was in the hospital for 5 days. I was on the road to recovery when 5 days later because I was NOT given blood thinners, I was back in the hospital for blood clots. I stayed in the hospital for another 3 days. The hospital stay was not that great. The fact that I ended up with blood clots put me back quite a bit for a fast recovery. I got rid of the pain pills in 10 days (much too long to be on them, but Oxycodene is very addicting. I started taking 500 mg of Tylenol for 4 or 5 days and stopped that. The recovery is slow because of these blood clots, but I am surviving.

On the 18th of this month I will be seeing my surgeon to get his feedback on how I am doing. I will have a CT scan of the pelvic and abdomen to see how the clots are doing. I will have an MRI to keep an eye on the sarcoma coming back. In fact, for the first year, I will have to have an MRI every 3 months. I do not have to take chemotherapy although I was offered it. It could work or it wouldn’t. I decided I wanted the quality of life back I had before this surgery and chemo would not offer that, plus it is not guaranteed that it will keep the sarcoma away. I figure I will take my chances and I feel confident that it will not come back. I will be monitored for 5 years. Once the clots are going, i will ask to get off of the blood thinners.

I feel the doctors at Mayo Clinic are the best and if I had not gone to them, I would not have the outcome that I do have. I believe in a lot of personal research to understand what you do have and the research behind it. A person has to think for themselves with the doctors help. It has been a month since my surgery and my leg is still swollen, and I still have the clots, but every day I see an improvement. I feel fortunate to be alive and I am so glad that I went to Mayo for this surgery. My suggestion is to stay positive at all times. It really does help.

Jump to this post

Hi @me67,
I’m thrilled to read that you were admitted to Mayo Clinic quickly are getting the care that you are. I remember reading about your diagnosis back when you first posted here in March https://connect.mayoclinic.org/discussion/sarcoma-256d3d/. At that time your local oncologist was making referrals and you were a bit concerned about the wait. Good to hear from you again.

REPLY
@me67

In October of 2016, after a 3 week vacation hiking the National Parks, I discovered that my right leg was swollen with a rash and redness. I went to my primary doctor who suggested I go and see if I had a blood clot. No blood clots. I proceeded to see a podiatrist thinking I had broken or sprain my foot. ( I have a high tolerance for pain). I had an EKG and a vein mapping done. I had CT scan that showed a tumor in my pelvic area. I even had a small surgery from a DR.James. Cooper that was unnecessary. He had told me that he could open me up and find out what this tumor was. He misled us. He told me a needle biopsy would only be a 50/50 chance of showing what this tumor was. Come to find out – he was wrong. After the minor surgery, the doctor told me he could not see the tumor and the biopsy of one lymph node was negative. I decided to have an MRI and again the tumor showed up in the pelvic area.
I finally broke down and went to a cancer doctor who recommended a needle biopsy. This is when they determined that it was a pleormorphic sarcoma. I knew NOTHING about sarcomas and started researching. After going to another surgeon and a vascular surgeon, I decided that I did not want to create my ow team of doctors and that I needed radiation when I was having the tumor taken out. The only ones to do this type of radiation is Mayo. It so happened that this second surgeon could facilitate to get me to Mayo. We decided to take this route.

I feel very fortunate that I was admitted to Mayo very quickly. It was determined that the sarcoma had started in the soft tissue and was leiomyosarcoma, I had to redo my research. Because my tumor was under 5 cm. I had a good chance of making it. I immediately felt that everything was going to turn out good and I keep my spirits up the whole time. I shared my thoughts with a lot of my friends and family on Facebook, thus the constant positive feedback.

I took 5 weeks of radiation through Mayo Clinic. (25 treatments in two different areas of my hip). I can tell you that the making of the mask for my radiation was the worse part, but otherwise things were great. I went to the gym 3 times a week and rode the bike for about 40 minutes each time. It helped with the fatigue. I only felt tired one day and after the gym, it went away. I have a slight discolor in the area of radiation. Still I kept my spirits high.

I had my surgery on June 6, 2017. I am 67 1/2 years old. I was in surgery 8.5 hours and recovery for 3 hours. The radiation had killed 20% of the tumor. I had 8 doctors in the operating room with me. The surgeon was able to take the small feelers from an artery and pul it from my iliac vein. The tumor scooped out nicely with ‘clean’ margins. It had grown from 3.5 cm. to 5.2 cm in that small amount of time. I am glad that I did not know that. The vascular surgeon was able to take the tumor away from the main vein and repair the vein. No one knew what they would actually find once they opened me up. They thought I would have to have the main iliac vein cut and grafted from another vein, but I was fortunate that we didn’t have to have that done.

I was in the hospital for 5 days. I was on the road to recovery when 5 days later because I was NOT given blood thinners, I was back in the hospital for blood clots. I stayed in the hospital for another 3 days. The hospital stay was not that great. The fact that I ended up with blood clots put me back quite a bit for a fast recovery. I got rid of the pain pills in 10 days (much too long to be on them, but Oxycodene is very addicting. I started taking 500 mg of Tylenol for 4 or 5 days and stopped that. The recovery is slow because of these blood clots, but I am surviving.

On the 18th of this month I will be seeing my surgeon to get his feedback on how I am doing. I will have a CT scan of the pelvic and abdomen to see how the clots are doing. I will have an MRI to keep an eye on the sarcoma coming back. In fact, for the first year, I will have to have an MRI every 3 months. I do not have to take chemotherapy although I was offered it. It could work or it wouldn’t. I decided I wanted the quality of life back I had before this surgery and chemo would not offer that, plus it is not guaranteed that it will keep the sarcoma away. I figure I will take my chances and I feel confident that it will not come back. I will be monitored for 5 years. Once the clots are going, i will ask to get off of the blood thinners.

I feel the doctors at Mayo Clinic are the best and if I had not gone to them, I would not have the outcome that I do have. I believe in a lot of personal research to understand what you do have and the research behind it. A person has to think for themselves with the doctors help. It has been a month since my surgery and my leg is still swollen, and I still have the clots, but every day I see an improvement. I feel fortunate to be alive and I am so glad that I went to Mayo for this surgery. My suggestion is to stay positive at all times. It really does help.

Jump to this post

Thank you Colleen for responding. This is what helped me through this ordeal – people that cared or were curious. I feel I was very lucky to have had the doctors that I did.

REPLY
@suzanneb

I hope it’s ok for me to post- my husband had a sarcoma and I was his caregiver. He was diagnosed at age 39 in 2009 with a stage 3 “Ewings-like” sarcoma on his left leg near his knee & luckily with no bony involvement.
It took longer than usual for diagnosis since it wasn’t exactly Ewings. I think they explained that it had slightly different DNA.
Finally they decided to say Ewings ‘like’ and treat it as such.
We lived in Dallas at the time and saw 3 Dr’s. We decided to go to Mayo (Rochester) for another opinion. We were most comfortable with the doctors and approaches there. The most important part was surgery to get clear margins. Several doctor friends gave advice that since this is such a rare cancer, he needs to find a top surgeon who has had many, many experiences with treating sarcomas.
His team made the plan for him to do several rounds of chemo (he was considered young in cancer years so he had a rigorous pediatric regimen), 5 weeks of radiation, surgery to remove the tumor, followed with several more rounds of chemo which was 10 months total treatment.
His oncologist was fantastic. He worked closely with our oncologist in Dallas so we could stay at home for treatment. We lived in Rochester for 5 weeks with our 2 daughters during radiation, followed by the surgery.
He finished with 6 rounds of chemo at home and finished in May 2010. We have always come back for check ups so his doctors could use their equipment, radiologists, and have their eyes on him. Not super practical to go back and forth, but cancer isn’t very practical! 😉 I hope that helps!

Jump to this post

Hi @suzanneb, caregivers are always welcome. By your sharing your and your husband’s experience, other people who are newly diagnosed with Ewing’s-like sarcoma will know they are not alone. It is so helpful to find fellow unicorns. How often do you return to Mayo for check-ups now that he is 7 years post treatment?

REPLY
@suzanneb

I hope it’s ok for me to post- my husband had a sarcoma and I was his caregiver. He was diagnosed at age 39 in 2009 with a stage 3 “Ewings-like” sarcoma on his left leg near his knee & luckily with no bony involvement.
It took longer than usual for diagnosis since it wasn’t exactly Ewings. I think they explained that it had slightly different DNA.
Finally they decided to say Ewings ‘like’ and treat it as such.
We lived in Dallas at the time and saw 3 Dr’s. We decided to go to Mayo (Rochester) for another opinion. We were most comfortable with the doctors and approaches there. The most important part was surgery to get clear margins. Several doctor friends gave advice that since this is such a rare cancer, he needs to find a top surgeon who has had many, many experiences with treating sarcomas.
His team made the plan for him to do several rounds of chemo (he was considered young in cancer years so he had a rigorous pediatric regimen), 5 weeks of radiation, surgery to remove the tumor, followed with several more rounds of chemo which was 10 months total treatment.
His oncologist was fantastic. He worked closely with our oncologist in Dallas so we could stay at home for treatment. We lived in Rochester for 5 weeks with our 2 daughters during radiation, followed by the surgery.
He finished with 6 rounds of chemo at home and finished in May 2010. We have always come back for check ups so his doctors could use their equipment, radiologists, and have their eyes on him. Not super practical to go back and forth, but cancer isn’t very practical! 😉 I hope that helps!

Jump to this post

Thanks!
We were up in April for a round of scans and the next time they will see him is in two years. His dr said that at this point my husband, Travis, would be more likely to find something to check out before they would. He said soon he won’t be scheduled for regular scans and they will see him as needed if we call.
Makes me happy and gives me anxiety all at once. He’s never been worried about a scan, but I’ve gotten so used to them for reassurance!

REPLY
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I’d like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

Jump to this post

Hi everyone. I likely have osteosarcoma but due to confusing pathology results, the jury is still out as to whether it is a primary sarcoma of bone or a secondary carcinoma metastasis from another location. I am being treated at UVA in Charlottesville, VA where there is no sarcoma clinic. I’m happy with my oncologist, but I’m scared that I should be somewhere else that specializes in sarcoma. I am a 40yo mother of 2 girls who are 8 and 5 so I also can’t even fathom how I could relocate for treatments anyway. My story goes like this… In February ’17, I noticed mild unexplained hip flexor pain. I gave it time, tried PT, and chiropractic care but it only got worse. I put myself on crutches for pain by April/May. I had an MRI on 5/15/17 that showed a lesion in my right femoral neck and that was the day that my world came crashing down. I was told to be non weight bearing because I was at risk of fracture and I had to wait to get in to see an ortho oncology specialist that was only at UVA one day per week. On 5/24/17, while waking up, I stretched and my femoral neck broke, aka, I broke my hip, just lying in bed. I was transported by ambulance to hospital and lay in bed for 7 days with a broken femur, waiting for the specialist to operate. I had a hip replacement on 5/31/17. I have been working on PT rehab and have started radiation treatments. I am all set to start chemo on 7/26 which will involve 2 cycles of 6-day inpatient infusions on Ifosfamide and Etoposide while having radiation and then will switch to 4 cycles of 3-day inpatient infusions of Cisplatin and Doxorubicin once radiation is complete. I’m scared that I am not at a sarcoma clinic and that I don’t know if I need this hard core course of chemo but I’m willing to do anything to save my girls’ mother! I’m still waiting for results from a breast biopsy to rule out breast cancer as primary site of origin. All other MRIs and PET scan are clear. My main concern is my beautiful children and their wellbeing. Thank you for starting this group @colleenyoung

REPLY
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I’d like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

Jump to this post

You need to get into Mayo Clinic, in my opinion. They have non-ivasive radiation (proton beam therapy) and all of my doctors were sarcoma doctors. They saved my life. There is a good Mayo in New York – Rochester. Get in there ASAP before you do that other radiation that is invasive. Good luck, Wendy.

REPLY
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I’d like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

Jump to this post

Hi @wendy76, welcome to Connect.
How frightening this must all be. We’re here and we’re listening. You may consider getting a second opinion at Mayo Clinic at one of our 3 campuses in MN, FL or AZ http://mayocl.in/1mtmR63 Our sarcoma experts may also be able to consult with your cancer care team locally. It’s worth a call to find out your options.

Wendy, do you have friends and family close by to help you and your girls while you’re in treatment?

REPLY
Please login or register to post a reply.