Diagnosed with sarcoma? Let's share

Creedyfly, you have no idea how great it is to hear stories like this. Thank you for returning after 18 months to share this news with everyone. To be "easily walking 3 miles" after surgery and radiation (other?) for myxoid liposarcoma of the thigh, wow! Just wow! Congratulations.

What do you wish you had known about this journey that you'd like others with liposarcoma to know?

In Oct 2017, my husband was diagnosed with lung cancer when a very small tumor was found during a routine preventative lung scan. He attempted to have surgery, in Dec 2017, to remove the lower lobe of his lung that contained the cancer, but due to too much scar tissue in his lungs that made it impossible to do without completely opening him up. The surgeon felt with the tumor being such a small size that radiation would be a better option, and the more complicated and more major surgery would be performed later, as a last resort, if needed.

His radiation treatments began Jan 2018, went great, and the already small lung cancer tumor had shrunk to more than half it's size and was still continuing to shrink. We both thought, "Yep, he's going to beat this lung cancer, and all will be great." He just, out of the blue one night, started complaining of severe abdominal pain in late August. A catscan done in ER revealed a large mass on each of his adrenal glands. The hospital immediately suspected lung cancer metastasis, but a biopsy would be needed to confirm that. My husband was admitted to the hospital, released, and readmitted 2 days later for abdominal pain, and ended up with pneumonia, as well.

When he was released the 2nd time, we got the biopsy scheduled for Sept.2018. It took forever for them to get back with us with the results. (All the while my husband is having aterrible abdominal pain and is declining rapidly .He how also had a mass in iis mouth too

m
aking it terribly painful for him to attempt to eat).
On Oct 4th When they did finally call us they said that it's Not lung cancer metastasis as they had originially thought, but as of that time they still had no idea what it was. They said they'd now run out of tissue due to the massive amount of testing they'd done already. They said they needed an entire lymph node to try to figure it out without running out of tissue again. He had surgery on Oct 5th to provide them with an entire lymph node. October 18th he ras diagnosed with Epitheliod Angio-Sarcoma and a hospice referral. He died 6 days later. on Oct 24th

What a difficult and painful journey for you and your husband in many senses of the word. Thank you for sharing your story. Sarcomas can be very tricky to diagnose.

Your loss is very new and raw. I invite you (if you wish) to join the discussions in the Loss & Grief group here: https://connect.mayoclinic.org/group/loss-grief/

Epithelioid angiosarcoma is a highly aggressive endothelial cell malignancy and it can start anywhere in the body. Is there anything that you have learned during this journey with your husband that you'd like to tell someone who may be newly diagnosed with an angiosarcoma?

Hi, I am fighting a Sarcoma most like Ewings, though I am a woman over 65. I have stage 4 currently in treatment for lung nodules. Help me connect?

Hi Vivian, welcome. I'm tagging @kristennursepatient @suzanneb @zaruhi @cali2007 and @erikahamilton, who also have Ewing's Sarcoma.

Vivian, You mention that your sarcoma is "most like Ewings". Do you have a rarer type of sarcoma that acts similar to Ewing's sarcoma? What treatment are they doing for the lung nodules?

My husband has just been diagnosed with Chondrosarcoma. We have had two dr appointments, the second at UW Medicine was pretty frightening. We are planning to go to Mayo for another opinion. It is in the pelvis and hip socket so large removal of bone. The desicion of whether to go with replacement bone or none is a hard one to make. Any stories from others journeys would be much appreciated.

Welcome @spadafarm. I can only imagine that the new diagnosis of Chondrosarcoma is frightening for both you and your husband. Luckily, there are several members who can share their journeys with you, like @deborahe @jeffk @julie010 and others.

You can read more about their journeys and connect with them in this discussion:
- Cricoid Chondrosarcoma https://connect.mayoclinic.org/discussion/cricoid-chondrosarcoma/

Have you already requested a second opinion at Mayo Clinic?

This is a very different type of chrondrosarcoma than what I was diagnosed with, and while I can offer support, I don’t feel I can offer any relatable experiences. Having said that, I do believe in getting a second opinion if time allows.

I have Lipo sarcomas in chest/ shoulder area. I have had 8 surgeries, 3 cryoblations and radiation. The first surgery was in 1988. Since the mid 1990’s I have been a Mayo Rochester patient. Presently I have a large mass on my brachial plexus. My oncology surgeon says the only way to stop this slow growing tumor is a quarter amputation of my arm/ shoulder. This would drastically change my life style. I am 77 years of age very independent and an active bike rider. My prayer is for continued slow growth. I am currently on a trial with Ibrance and have been taking it for 2 years. The masses have not shrunk and recently showed some growth. Positive attitude and trust in my team at Mayo has allowed me to remain positive and live life to the fullest.

I was diagnosed in 2018 in Michigan with a mass on my back near my right shoulder blade. My GP expected it to be a lipoma so I went to a general surgeon. Whoops. When the biopsy was positive for cancer, I went to University of Michigan Rogel Cancer Center for two additional surgeries-- radical removal to get clean margins and flap reconstruction. The biopsy and research found small blue cell sarcoma, most like Ewings. I also had tiny nodules in my lungs, so I had 7 rounds of chemo: doxorubicin, cyclophosphamide, and vincristine. Then we moved to Phoenix, and I came to Mayo Clinic Phoenix to continue my care 2019-current. I've had four rounds of radiation to nodules as they appear, and most recently just finished 7 rounds of chemo: topotecan and cyclophosphamide. Then my CT last week shows I may have Valley Fever, awaiting blood test results, or more masses in my lungs I've been very positive throughout and during Covid isolation. But this new challenge is a shock. I rarely go out, always wear a mask, and take care of myself. Cancer sucks!