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

@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?

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@colleenyoung Yes, I feel a great deal of support from family that is not local and friends that are local. My family members have been taking shifts staying with us and helping with the kids. My mom is on her way back this week to stay indefinitely until this is all over. And local friends have been bringing meals, helping with housework, and offering to take the kids often. It doesn’t take my worries away completely, but it helps and I feel very lucky. I’ve been wondering what the process would be like if I were to call another place like Mayo. Would it be a long process of medical record exchange and reviews and wait time until someone could actually look over all of my medical history? I worry that it would delay my treatment that is scheduled to start 5 days from now. And how would sarcoma experts from Mayo be able to consult with my local team of docs?
@me67, thank you for your helpful personal advice… I’m going to look into what can be done on a consultation basis since it isn’t realistic or feasible for me to leave my kids and travel back and forth to a far away place.

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@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?

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If you decide to go the Mayo route, you should ask one of your local doctors to call and make the arrangements. My husband was under the care of a local Mohs surgeon for Squamous Cell Carcinoma – Spindle Cell. When the local dr decided that it was beyond the scope of local medicine he called Mayo. We live 6 hours away. When we arrived, we had an appt with a Dermatologist, Radiation Oncologist, Chemo Oncolgist, General Surgeon and Plastic Surgeon – all at once – in the same room. While Mayo is certainly accommodating, without the local doctor’s liaison, I don’t think we could have done that on our own.

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@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?

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Get your doctor to recommend you to Mayo and you will get in faster. Plan on spending the day there because you will see all the doctors in the same day. They are all so advanced. Good luck. Let us all know what you do and decide.

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@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?

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Hi @wendy76,
You’re asking good questions. Each person and situation is different. If you call Mayo Clinic http://mayocl.in/1mtmR63, they can answer your questions specifically tailored to your situation. Gaybinator and Me67 are quite right that it can help to have your doctor call, but it is not mandatory that a referral be made by a doctor. You can call to ask your initial questions.

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@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?

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Thinking of you today, Wendy. I know today you started chemo. I’m sure it was a long day. Just wanted to let you know that we’re thinking of you.

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@deborahe

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

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Hello Deb, I had my six month visit with Dr. Moore a couple a weeks ago and I am happy to report I am cancer free and well on my way to recovery. I have been working out and now built up to a 4 mile run which has been challenging to do because of the paralyzed vocal cord which still blocks about half of my airway. The good news is that I really do feel very good. Please let me know how your recovery is progressing. All the best Jeff.

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@deborahe

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

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That is awesome news! I am so happy to hear of your fantastic medical results and your continued recovery!
I am due back mid-October for a CT scan and hope to hear the same. I am back walking and was encouraged to get back to my 3 miles at nearly the pace I was pre-surgery. I still have some breathing and voice issues, but hopeful those will continue to improve.
Stay in touch!
Deb

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My wife has been diagnosed with osteosarcoma bone cancer on her birthday of this year then had major surgery done on her right leg on February 14th. The pain my wife is going through is un describable. All she does is cry in excruciating pay. We were told after the surgery the pain should go away. Now it has gotten worse than before surgery. They also found 3 small masses in her right lung and now where they have already done the surgery a place was missed next to her pelvic. This is where all the excruciating pain is coming from. I feel so helpless since really nothing I can do to help her accept be their for her. People make me angry making comments like is she really in that much pain? I placed a site up for her go fund me to try and get help for us. I am a service connect disabled veteran, and she is on SSD. So its really tuff since we have to travel to Indianapolis Indiana 2-3 times a month from Michigan City Indiana. 3-4 hour drive. Anyone know where I can get help with information, grants charities? I am hold up as well as expected but at times I do break down and start to cry. However I never try to do this in from of her of course. Why don’t they just removed the tumor by her right leg which is causing the pain?

Liked by Dee

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@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?

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Hello my name is Cyndi,

My husband 51 has just been diagnosed with osteosarcoma. He had rectal cancer seven years ago and has been cancer free for six years. They are saying that the rare sarcoma is due to the radiation he received for the rectal cancer. Very rare side effect apparently but we always seem to fall into Murphy’s law, 🙁 It is on his left hip iliac and moving downward to the sacrum. He’s very active in excellent health and a small place in his hip started to have pain around the May time frame stopping him from playing tennis. He thought it was a disk issue and consulted several ortho and did two rounds of physical therapy with no real improvement. The ortho brushed it off and said he just has an 60 year old back in a 50 year old person but I’m glad my husband pushed him for more and finally got an MRI. Anyhow, we are just started on this journey (once again) and it sounds much worse as it’s so rare and my philosophy is get to the best medical team possible and is dealing and seeing the type of cancer frequently. That said we are fortunate somewhat to live in the Chicago suburbs but even in several highly respected research hospitals here these specialists are rare. It seems University of Chicago is the best and we are working on getting a consult there quickly. From my research, of course the big 3 Mayo, Anderson, and Ketterling sound like they have the most experience in seeing the rare “hip” bone cancer but because it’s so rare I was wondering if anyone had experience with this type of cancer and your experiences or thoughts on the three hospitals. We need to get this analysis and consults done quickly obviously to start treatment. My husband has the most positive attitude which is amazing . With the rectal cancer he endured the chemo, radiation, and two operations and kept on with his normal life and even improved his tennis game (he’s a high level player) including the 3 months he had an ostomey bag. I think he only missed 4 days of work which was when he was in the hospital. He treats it like a injury and knows he’s just got to do what the Dr. say and things will get better. He’s a fighter for sure. We have a 13 year old and 11 year old who we told yesterday and handled it well as we will let family know this weekend. Any advice or experience with this type cancer (good or bad) is appreciated. Thanks so much.

@wendy76 I hope you are doing well. Sounds like you should be 2 months in now. I know how you feel with the two young children. Sending positive thoughts and prayers.

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@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?

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I think Mayo Clinic is your best choice. They saved my life with their proton beam therapy and I did not have to have chemotherapy. My surgery was 8.5 hours with 3 hours of recovery. This was in June 2017. I will be 68 this December. I am going to the gym 3 days a week and hiking already. They were wonderful sarcoma doctors.

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@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

@me67

Your Mayo experience sounds wonderful! I appreciate your sharing your story with our Connect Members.

Teresa

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@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?

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@c945105

Your husband sounds like a person with remarkable resiliency! We all wish him well.

Will you please keep us updated on how he is doing?

Teresa

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Heather is a loving caring person, and has one biological child Nicole age 12, and three other step children, Joe, Dillon and Brittany. Over the years she complained about her right leg bothering her. Many times she lay in bed crying because the pain was so unbearable. After 7 visits to the ER for the same leg pain. On January 2nd just a few days from her birthday she was diagnosed with cancer. She was transferred to IU cancer center the following days from Porter Manorial. There we would learn the type of cancer she had. A biopsy was done but no result could be given because of the rarity of the type of cancer. We later learned she had Osteosarcoma a rare bone cancer. To make things even worse she had to undergo 10 hours of surgery on February 14th 2017. No much of a Valentines present huh? They had to remove 15 centimeters of her femur bone and also replaced the hip ball.

Recommended treatment is chemo therapy to shrink the tumors. About two months into therapy we learned that they had found 3 more masses in the right lung, Then again another mass in her pelvic area. I feel so helpless for her because of the pain she has to endure on a daily basis, all she does is lay and cry in excruciating pain from the bone cancer. I even asked the doctors why is she in so much pain? They all say “The Bone Cancer”. Therefore it constant trips to the ER to try and get her Acute pain under control. Pain specialist are now trying to get her comfortable until the pain “pump” can be put in on the 21st. of September.

Liked by Dee

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@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

My wife has Osteosarcoma and is only 32. It really hurts to see her in so much pain. Dr. Rushing at IU Indianapolis is an expert in this type of rare cancer. This Dr. is amazing how he explains the type what it does and what to expect. According to statistics and research IU is the #1 hospital for Cancer in Indiana. IU is also connected to several hospitals Riley, St. Jude, and others. Never seen a hospital so huge. All I know from my experience in UI they are great people who care for my wife. They have compassion and empathy towards there patients. All you can do is be there for them and stay strong. I try as much as possible but at times I break down and cry to see my wife suffer this why. It even hurts more for her to ask WHY ME? The pain is so excruciating for her she asked them to just cut her leg off. I am optimistic the pain pump will work and they can continue with chemo to beat this.

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@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

Thanks so much for info and also so glad you are doing great:) It’s always encouraging to hear the success stories. We asked the one oncologist we’ve seen about proton therapy and he said it might be possible but most success is with tumors that are very defined in shape. Curious if your cancer was on the iliac or hip bone or somewhere else? Thanks

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