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?

Interested in more discussions like this? Go to the Sarcoma Support Group.

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?

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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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@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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@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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@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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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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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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@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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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?

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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

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.

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