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.
Hi,
I just had a left pneumonectomy on Nov 30. Upon further examination they tell me my tumor was undifferentiated sarcomatoid carcnoma. It was also found in 5/19 lymph nodes. They took out all the cancer they could find along with the lung . No metastasis . Next step is a scan in may. Should i do anything in the mean time?
Jeff
Surgery 2021.
Then chemo and radiation.
The broken tibia,
2022, Dec radiation and chemo for spots on lungs
Now waiting fór second opinion.
No worries. I wouldn't want anyone to have what have.
Sadly no
Hello @whpsurvivor2022
Several months ago you posted about a lump that was found on your femur. I was wondering how you are doing. Did the MRI determine the cause?
Of course. And yep, I live in India. West Bengal to be precise. And thank you for sharing, we hope you are fine now. May I ask you when did you start its treatment and how are you now? Has it re-occurred?
Hello. I'm 60 years old and was diagnosed with rhadomyosarcoma two years ago. I'm still under treatment as the tumor has jumped from one place to another. Is there anyone out there has the same diagnose as mine? I was told this is a very rare disease in older age because it's mostly only children.
Hello @barman I am a five year survivor of high grade dedifferentiated liposarcoma. Needless to say this is a hell of an ordeal. May we (collectively) ask where it is that you reside currently? My diagnosis followed a biopsy and then 4 weeks of radiation followed by surgery 3 weeks later. In my case it was determined that there wasn't a chemotherapy that would be helpful but that was 5 years ago and there are some great advances that have been achieved in the interim. I agree with the group that you would greatly benefit from a high level sarcoma center at this stage and Mayo Clinic is at the top along with a few others.
Hello. I have not posted in a long time. But i started adjuvant chemotherapy yesterday. 4 days every month for 6 months.
This was after a bilateral hysterectomy including lymphnodes and ovaries at the end of October 2022.
Diagnosis: Central PNET with neuroblastoma features. Stage IIIc1
My cocktail is CISplatin / Etoposide / Cyclophosphamide.
I learnt since my last post that this is not a sarcoma but was classified as such because of the rarity of the tumor. So i am not sure i qualify anymore to participate in this group 😅.
I have looked for C-Pnet with neuroblastoma references in adults and did not find anything so maybe this is my home 😂
I am still followed by the Gynecology oncology group. But they partner with a Neuro-oncologist because of the Central System type of tumor.
So far so good as of day 2, cycle 1.
I thank everyone who helped me when i was panicking, especially our moderators. And thinking of everyone involved in this long journey, sending positive vibes.
No need to go to the fair for emotional and physical roller coaster rides 🙂
Thank you so much for your response!!
Please keep us updated with your health.. we'll be grateful.
Hoping for your soon recovery!!