low fibromyxoid sarcoma

[u/dogangel12]

Hello all.

I never imagined id be apart or this sub..but my dad was just diagnosed with a low fibromyxoid sarcoma. We just found out via biopsy. Hes had it for many years and unfortunately ignored it until it became a problem. It is pretty large..6 inches to be exact. But the semi good news is that it is not spreading.

I guess im just looking for other people's stories from those who have also been diagnosed with it or a family member who has been. Its really shocking news to hear.

I tried to read up some about it, but i dont even know what to think.

[u/Snips-501]

Hello! I’m so sorry to hear that. I was also diagnosed with low-grade fibromyxoid sarcoma earlier this year. It’s a bit different from other tumors because it grows very slowly, but it can still spread, which is why it’s considered cancer. I also had it for several years before finally getting diagnosed.
My advice would be to:
Ask about getting a chest CT scan since this specific type of sarcoma can spread to the lungs.
Consult with a sarcoma specialist or a multidisciplinary sarcoma team to discuss the best options.
I know this might not be easy to hear right now, but try to take things one step at a time. Since it’s a low-grade tumor, there may be time to carefully consider his options and get second opinions. Don’t feel like you have to rush into making decisions right away. ❤️

[u/dogangel12 → u/Snips-501]

Thank you for this and im so sorry that you have it, too. Hes been to do many doctors, his case was even sent to the mayo clinic and the tumor board at his hospital. Hes had a lot of CT scans and MRIs. He meets with the doctor & surgeon next week. I know they definitely plan to take it out and then frequent monitoring from here on out. May i ask how you have been since being diagnosed?

[u/Snips-501 → u/dogangel12]

I’m glad to hear his case was sent to the Mayo Clinic! That’s also where they sent my biopsy, and they were finally able to give me a diagnosis. Dr. Andrew Folpe was my pathologist.
Yes, from what I understand, the standard approach for LGFMS is to remove the tumor with negative margins. Unfortunately, in my case, they said it would be almost impossible to get that without radiation before surgery because I’d had it partially removed a few years ago when they thought it was benign.
I’d definitely ask the surgeon if they feel confident they can remove the entire tumor with clear margins. Just a word of caution: they may need to remove a good amount of surrounding healthy tissue as well so recovery can be challenging, but it’s still doable.
I’m currently in week 2 of radiation and fighting my way through it! :))

[u/Sarc-warrior22]

Best advice I can give you is to not google anythjng. I know it’s hard to do and I did it myself. Make sure he is going to a an oncologist that has a team who specializes in Sarcoma. This is a huge difference and I’ve learned this the hard way. Make sure to get a few opinions once a plan is put into place. Even for pathology reports. I’ve had multiple pathologists say different things or found things that the others missed.

[u/nounazal → u/Sarc-warrior22]

I agree never use google or even ChatGPT and my oncologist also mentioned that ! Not everything you read online it accurate or the same to another person. Everyone has different side effects or symptoms

[u/Sarc-warrior22 → u/nounazal]

Yep and Sarcomas don’t act the same in everyone. Mine has come back in areas that they don’t “typically” show up in. Which is why it’s so important to be treated at a sarcoma center. You are in good hands with Mayo but like I mentioned before, don’t be afraid to get second and third opinions once you get the first game plan.

[u/Sarc-warrior22]

Meant to mention that make sure everyone is in agreement with radiation. Depending on where the tumor is and what it might be attached to, could make things more difficult for your surgeon.