Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

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.

william2022 | @william2022 | Oct 14, 2022

In reply to @damlady2 "Mayo oncology is the best. I did not go for. 2nd opinion because I had confidence..." + (show)

I agree with you wholeheartedly even though I have benefited from a distance. There is an interdisciplinary Sarcoma Board with membership which includes Mayo Clinic, Cleveland Clinic, Aurora Medical Center (my own healthcare center), Northwestern and others. The board meets virtually every Monday and my case was presented to the board just after I was diagnosed. I feel extremely fortunate that I was able to benefit from such extensive combined wisdom in the course of my treatment and now continued annual reviews.

Of course I also feel very fortunate that I have had very good health since my surgeries in 2017.

I hope that in some way I can be helpful to those here who are struggling with so many extraordinary challenges. My prayer today is that all may benefit from a period of deep peace.

William

Dlady | @damlady2 | Oct 14, 2022

Mayo oncology is the best. I did not go for. 2nd opinion because I had confidence in my Drs.

william2022 | @william2022 | Oct 13, 2022

I was diagnosed with de-differentiated liposarcoma in May of 2017 at Aurora Medical Center located in Milwaukee, WI. The mass was located in the upper right wall of my chest. Following 34 days of radiation therapy, I first had surgery to remove the mass and ten days later a second surgery to reconstruct the section with a latissimus dorsi flap. Cancer free for five years now but did have a suspicious small mass surgically removed last month which was benign.

I am currently a patient at Mayo in Rochester where I am seen quarterly for injections to relieve lower back pain.

rggj | @rggj | Oct 3, 2022

I was diagnosed with Pleomorphic liposarcoma in 2017. Surgery removed the tumor. Radiation and Chemo followed. It just popped up out of nowhere and grew very aggressively. To date I have not had a reoccurrence.

Dlady | @damlady2 | Oct 1, 2022

In reply to @colleenyoung "Dlady, I'm just seeing this now. So great to hear that rehab is going well. I..." + (show)

Not yer but I am looking forward to it. Most of my pain is in my nonexistent shoulder.
I find comfort in my phantom arm.

Colleen Young, Connect Director | @colleenyoung | Oct 1, 2022

In reply to @damlady2 "I can write that the surgery went well- only 10 hours. I am in rehab at..." + (show)

Dlady, I'm just seeing this now. So great to hear that rehab is going well. I agree that the rehab people on Generose 4 on Saint Marys Campus are fantastic. Did they offer any guidance on dealing with phantom pain?

Dlady | @damlady2 | Sep 25, 2022

In reply to @damlady2 "Sept 14th is my Four Quarter Amputation. Anticipated length of surgery is 16 hours. I will..." + (show)

Did the surgery in 10 hours. I am in Rehab now and am walking without a cane. In OT I filed my left nail yesterday. The plan is to return to independent living by Oct 5. My phantom arm gives comfort most of the time. Thanks for asking.

Dlady | @damlady2 | Sep 25, 2022

I can write that the surgery went well- only 10 hours. I am in rehab at Genoese 4 now and am growling stronger every day. I am walking without a cane in PT an working on balance. I feel comfort from my phantom arm but sometimes it does hurt. The therapy here is the best.

Colleen Young, Connect Director | @colleenyoung | Sep 24, 2022

In reply to @damlady2 "Sept 14th is my Four Quarter Amputation. Anticipated length of surgery is 16 hours. I will..." + (show)

@damlady2, just a quick note to let you know that I've been thinking of you. I hope the forequarter (interscapulothoracic) amputation went well and that it wasn't any longer than 16 hours. It is such a complex surgery.

It's been only 10 days since your surgery, so I doubt that you are able to write. But perhaps you have voice to text abilities on your phone or computer. I'd love to hear from you. If you're not able, just know I'm wishing you a good recovery.

luna6922 | @luna6922 | Sep 12, 2022

In reply to @colleenyoung "Welcome, Christine. You've got a lot going on with both your leiomyosarcoma and taking care of..." + (show)

Thank you @colleenyoung I have requested an appt. I have my pre-op tomorrow at the University but am hoping to get my treatment moved to Mayo! I have been going for CT scans every 3 months since my hysterectomy and was clear up until July 2022. I then had another CT scan 26 August and the spot has grown. I am meeting with the Surgeon tomorrow to see what my options are - I will update you after my appt. I appreciate all of the support and say my prayers for all of those that are in need. Enjoy the day. Christine.