Anyone have spindle cell sarcoma?

Posted by amybr @amybr, Dec 6, 2022

Has anyone had spindle cell sarcoma on the sacrum & sciatic nerves? How was the outcome?

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I took have suspicious modules on thyroid. I have been assured by thyroid doctor and oncologist that spindle cell sarcoma does not go to thyroid. I joked with them and said well there is always a first. Not funny.

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@abartels

Now, since he has finished his last treatment, they have scheduled the removal of his thyroid. A calcified ridge on the thyroid was found in a PET scan. Testing has shown there is a 50% risk of it being cancer. He is on medication for his thyroid, so it was recommended to have it completely removed.
Does pleomorphic spindle cell sarcoma attach to thyroids?

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@abartels, as you and your husband prepare for removal of his thyroid, you may wish to follow the discussions here:
- Thyroid Cancer Support Group https://connect.mayoclinic.org/group/thyroid-cancer/

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Good morning, I'm new here.
Has anybody being treated for pseudomyogenic emangioendothelioma involving muscle, fat and skin?
It is a very rare type of sarcoma.
Thanks

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@renzorg

Good morning, I'm new here.
Has anybody being treated for pseudomyogenic emangioendothelioma involving muscle, fat and skin?
It is a very rare type of sarcoma.
Thanks

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Welcome, @renzorg.
For anyone unfamiliar with this type of sarcoma, pseudomyogenic hemangioendothelioma (PMH) is a rare vascular tumor, also known as epithelioid sarcoma-like hemangioendothelioma.

Renzorg, is this a new diagnosis for you? May I ask how old you are? What treatment is being recommended?

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My daughter in law was diagnosed with spindle cell sarcoma 1 year ago. A small cyst looking lump was removed from her upper arm. Margins were clear. She underwent 6 weeks of radiation. All went well. We are now at her 1 year follow up. She had a chest CT yesterday that said, “sclerotic focus 1.8cm in anterolateral aspect third rib” but also stated “no new osseous lesion identified”. Is this good or bad news?

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It's my son that was diagnosed with PMH. He is 25, athletic. He first noticed a lump on the his left thigh that bothered him only when he ran downhill. OF course he thought it was only a minor muscular problem due to his unning and mountain climing. A few months later some "pimples" appeared around the same area that he thought were not related with the lump. An MRI and a biopsy of the "pimples" brought the diagnosys.
MRI (after ultrasoumd)
The presence is confirmed. in correspondence with the middle third of the left vastus lateralis muscle. on the anterior side, of a solid polylobulated neoformation (max > 5cm) with multiple pseudonodular components with blurred margins, hypointense in T I and T2 and characterized by moderate restriction of diffusivity in DWI (average ADC value 1.5) and persistent/homogeneous post-contrast enhancement. The lesion does not present infiltrative-type attitudes towards the muscular structures and subcutaneous alterations of an inflammatory-edematous type.
Treatement
The recomandation by the cancer / sarcoma institude (Italian National Tumor Institude in Milan) was the following:
Multidisciplinary discussion INT: the review of the images revealed the presence of diffuse nodules at the intramuscular and subcutaneous levels. The disease was judged to be completely removable with the need for plastic reconstruction given the need to extend the cutaneous margins of the resection to include the superficial multi-nodular disease. However, in light of the diagnosis of pseudomyogenic emangioendothelioma, the multifocality and indolent progression of this histotype, the indication for a destructive surgery or one that requires a major plastic reconstruction is excluded, which may not resolve the painful symptoms. In consideration of the symptoms, the possibility of removing only the most painful sites of disease will be discussed with the patient. If superficial, the feasibility of electrochemotherapy may be evaluated as an alternative.
In other words: wait and watch, MRI after 3/4 months and decision to go for surgery if progression occurs to a point of causing severe disconfort (he still runs and climbs as before). He is due for the next follow up in July

Sorry for the long answer, but I thought details may be important.

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@colleenyoung

@abartels, as you and your husband prepare for removal of his thyroid, you may wish to follow the discussions here:
- Thyroid Cancer Support Group https://connect.mayoclinic.org/group/thyroid-cancer/

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His thyroid was removed, and he is doing well.
On June 3rd, he goes in for a biopsy on his lung.
The last CT scan without contrast found a 1.1 x 0.9 cm pleural-based lesion in the upper hemithorax. His other pulmonary nodule has decreased in size.

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@k99

My daughter in law was diagnosed with spindle cell sarcoma 1 year ago. A small cyst looking lump was removed from her upper arm. Margins were clear. She underwent 6 weeks of radiation. All went well. We are now at her 1 year follow up. She had a chest CT yesterday that said, “sclerotic focus 1.8cm in anterolateral aspect third rib” but also stated “no new osseous lesion identified”. Is this good or bad news?

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@k99, has your daughter-in-law met with her doctor to discuss the findings in the CT scan? What did she learn? How is she doing?

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We received bad news, it has moved to his lung.

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