Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7174
Joined: Jul 23, 2014
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
Today is a great. Breathing well, feeling the good feeling of living today to the fullest, joyful, faithful , hopeful day. I have found one day at a time only. Yesterday was trying. Hard to breathe and my heart rate kept hitting 160-200.
Which can make getting to a porta potty a huge challenge. Still am hungry so French Toast, scramble eggs and bacon. When you feel defeated is when you have the most strength to fight. I hope this will uplift a few of you. Because yesterday a few of you made it possible to be positive today. Thanks
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@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!
Thank you so much for sharing! I was diagnosed in Dec 2018 (at age 38) with Ewings type sarcoma in my right upper leg. Did chemo, surgery (with clear margins), more chemo, and 6 weeks of radiation (in Rochester). I'm just 3 months our from my last chemo, and it's really encouraging to hear about someone who has struggled with the same things as me, and is doing ok! Thank you!
REPLY I discovered a small lump on my back around my shoulder blade last spring. I was diagnosed with small cell sarcoma and had surgeries to get clean margins and reconstruction from April-July 2018. I also had chemotherapy from Aug-Dec 2018, because scans revealed nodules in my lungs. Chemo reduced most of them, but one has enlarged since my last infusion. I am scheduled for radiation in a few weeks. My sarcoma is very rare, although may be similar to Ewing’s. Love to hear if anyone wants to share.
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kristennursepatient
@kristennursepatient
@kristennursepatient
Posts: 19
Joined: May 20, 2018
@kristennursepatient Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed against one of my ureters blocking the drainage from my kidney (causing pain similar to a kidney stone) and was very small when it was found. I've been through 7 rounds of chemo and have had surgery to remove the portion of the ureter that had the tumor. The tumor was unable to be seen on CT after just the 3rd round of chemo,, so things are going well. I'm being treated by the sarcoma group at Mayo in Rochester, MN. Each of my chemos requires a hospital stay of 3-6days which is hard on this mom of 4 (ages 11-20).
I made it through and am now getting back to work. Last week was my first full week of work, it was exhausting but good to be back.
Liked by Colleen Young, Connect Director, Dee
@kristennursepatient I made it through and am now getting back to work. Last week was my first full week of work, it was exhausting but good to be back.
It's really encouraging to hear about others out there struggling with the same things. Having a rare cancer is tough, but one of the things that bothered me is that you never get to talk to someone experiencing the same thing exact. I'm glad fo hear you guys are moving forward.
Liked by Colleen Young, Connect Director, 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?
My sarcomas were soft tissue. Dr. Attia is my treating Dr. Dr Sherman was the surgeon who removed the sarcoma. The cancer is in remission,yea. Currently I'm on a chemo maintenance program every six (6)
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Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7174
Joined: Jul 23, 2014
@saemlerpe My sarcomas were soft tissue. Dr. Attia is my treating Dr. Dr Sherman was the surgeon who removed the sarcoma. The cancer is in remission,yea. Currently I'm on a chemo maintenance program every six (6)
Welcome to Connect, @saemlerpe. I'd like to introduce you to @ventibug and @me67, who also have soft tissue sarcoma.
Saemierpe, what type of soft tissue sarcoma do (did) you have? What chemo maintenance are you on and how are the side effects?
@kristennursepatient, how are you doing back at work? Are you able to pace yourself and manage fatigue?
@viviand have you started radiation yet?
@erikahamilton did you already finish radiation?
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kristennursepatient
@kristennursepatient
@kristennursepatient
Posts: 19
Joined: May 20, 2018
@colleenyoung Welcome to Connect, @saemlerpe. I'd like to introduce you to @ventibug and @me67, who also have soft tissue sarcoma.
Saemierpe, what type of soft tissue sarcoma do (did) you have? What chemo maintenance are you on and how are the side effects?
@kristennursepatient, how are you doing back at work? Are you able to pace yourself and manage fatigue?
@viviand have you started radiation yet?
@erikahamilton did you already finish radiation?
I'm doing good. Recovery takes more time than I was okay with. My blood counts are back to normal so I am pushing myself on a daily basis to get back to normal. It seems to be paying off as my stamina seems to be returning.
Liked by Colleen Young, Connect Director, Dee
@saemlerpe My sarcomas were soft tissue. Dr. Attia is my treating Dr. Dr Sherman was the surgeon who removed the sarcoma. The cancer is in remission,yea. Currently I'm on a chemo maintenance program every six (6)
I am also being treated by Dr Attia at Jacksonville for UPS (undifferentiated pleomorphic sarcoma). I was diagnosed 2 years ago and have been through radiation and surgery (at another hospital) and now on my second type of chemo with Mayo. UPS first appeared in my left calf and I had to have the soleus muscle removed. It has since metastasized in the lungs, but the treatment I am receiving now seems to be keeping it small, and not spreading. I choose to remain hopeful and busy. 😁
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Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7174
Joined: Jul 23, 2014
@viviand I discovered a small lump on my back around my shoulder blade last spring. I was diagnosed with small cell sarcoma and had surgeries to get clean margins and reconstruction from April-July 2018. I also had chemotherapy from Aug-Dec 2018, because scans revealed nodules in my lungs. Chemo reduced most of them, but one has enlarged since my last infusion. I am scheduled for radiation in a few weeks. My sarcoma is very rare, although may be similar to Ewing’s. Love to hear if anyone wants to share.
Vivian, @suzanneb's husband also had a Ewing's-like sarcoma.
Vivian, Suzanne, @kristennursepatient @suzanneb @zaruhi and @erikahamilton, I'd like to suggest that one of you start a new discussion specifically about Ewing's sarcoma. What do you think?
Here's how:
1. Go to the Cancer group https://connect.mayoclinic.org/group/cancer/
2. Click START A DISCUSSION
3. Enter a title and message.
4. Click CREATE DISCUSSION.
Liked by Dee
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7174
Joined: Jul 23, 2014
@fasthealer I am also being treated by Dr Attia at Jacksonville for UPS (undifferentiated pleomorphic sarcoma). I was diagnosed 2 years ago and have been through radiation and surgery (at another hospital) and now on my second type of chemo with Mayo. UPS first appeared in my left calf and I had to have the soleus muscle removed. It has since metastasized in the lungs, but the treatment I am receiving now seems to be keeping it small, and not spreading. I choose to remain hopeful and busy. 😁
Welcome, @fasthealer. There are a few members talking about UPS here:
– Undifferentiated Pleomorphic Sarcoma https://connect.mayoclinic.org/discussion/sarcoma-256d3d/
What type of chemo are you now on and how frequently? Do you have to travel far to get chemo treatments?
Liked by Dee
I'm on cycle 41, Every six week I have a blood draw, meet with Dr. Attia review my results and have my chemo. Since the start of treatment,I have been on Doxial. The first 5 treatments were difficult. After that I had little or no side affects. I'm lucky I live about 20 minutes from Mayo Jacksonville Campus.
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Heartbroken
@amd123
@amd123
Posts: 3
Joined: Apr 07, 2019
Hello. My son was diagnosed with synovial sarcoma in 2017 just two weeks before his 21st birthday. He had proton therapy and major thoracic surgery 6 weeks later. Surgeons removed two ribs, part of his lower lobe, and the mass that was growing near near it all. He had to take a sabbatical for a semester from college, but he returned to school and graduated on schedule. He had just started working two weeks before at a job in his field, when we received the news that his cancer had metastasized. He is only 23. Mayo immediately began the process of getting his chemo started. We have now completed two cycles. He has no appetite and is very nauseous. We are devastated by this all. He is trying so hard to be strong. 5 days after his first cycle, he went back to work. I know he is hoping he will be able to do the same this time, but I’m not sure.
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christine19
@christine19
@christine19
Posts: 6
Joined: Jun 14, 2018
@amd123 Hello. My son was diagnosed with synovial sarcoma in 2017 just two weeks before his 21st birthday. He had proton therapy and major thoracic surgery 6 weeks later. Surgeons removed two ribs, part of his lower lobe, and the mass that was growing near near it all. He had to take a sabbatical for a semester from college, but he returned to school and graduated on schedule. He had just started working two weeks before at a job in his field, when we received the news that his cancer had metastasized. He is only 23. Mayo immediately began the process of getting his chemo started. We have now completed two cycles. He has no appetite and is very nauseous. We are devastated by this all. He is trying so hard to be strong. 5 days after his first cycle, he went back to work. I know he is hoping he will be able to do the same this time, but I’m not sure.
So, so sorry for your son. I will keep him & your family in my prayers. Hopefully, the chemo & treatments will be successful & he’ll be able to resume a more ‘normal’ life (…although, life with/after cancer is not normal—I guess it’s the ‘new normal’). Try to focus on positive thoughts.
Liked by Dee
@ld57feast
In reply to @ld57feast
This is Tessa after her morning visit and massage. She loves her morning and evening visits on my lap. I love them too.
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