Welcome to the forum Jo.

I'm sorry to hear your husband has been diagnosed with such a rare cancer that you're finding it difficult to find information but hopefully our cancer nurses will be able to help. Just give them a call next week on their freephone number 0808 800 4040, Monday - Friday between 9a.m - 5pm and they will do all they can to point you in the right direction.

Kind regards, 

Steph, Cancer Chat Moderator

Dear Jo,

my husband passed away about 18 months ago with Histiocytic Sarcoma, and the doctors here in Australia also told us at the time of diagnosis, “we are now in uncharted territory”. My darling was diagnosed when the cancer was very advanced and he also had, separately, follicular lymphoma.  His doctors were in contact with colleagues in Canada where they said there had been the most recent documented cases (at that time). I would be happy to send you the details of my husband’s name and the hospital where he was treated so that your husband’s doctors can contact them to share information. I will try to add you as a friend to send a private message, please bear with me if I mess it up!  I am sorry to tell you, though, that I don’t have any information about successful treatment or trials but if I can help by sharing what happened with us.

Louise

Hi Jo

How are you and your husband doing?

my wifes brain tumor pathology just came back with a diagnosis of Histiocytic sarcoma. Would like to get in touch if its ok because it's all new to us and theres no one with any experience with it.

regards

Karan

Hi how is your wife doing? my dad has stage 4 HS and its sadly everywhere. They are pushing back with chemo and radiation atm to try and lower my dads pain. 

I'm really sorry to hear about your Dad. I hope the chemo and radiation show positive results. How long ago was he diagnosed with HS? 

We found out on Valentines day:-( were still in shock. Mum had stage 4 ovarian cancer and shes in remission now, and now my dad. How is your wife?

She is recovering well from the brain surgery, she has weakness in her right leg but it's recovering (slowly). No one has yet given us an explanation of the diagnosis or what she is up against. (it's still with Pathology though an earlier biopsy had said the opinion favors HS). The diagnosis went from a common Meningioma to a possible infectious tumor to HS once she had the biopsy.

I think right now we need to know what to expect in terms of how aggressive it is. To me, from my reading of the path reports and online research, the prognosis is usually poor but I can't share that opinion with her as it is not a trained opinion and would do more damage than good especially if it's not what the docs think.

From what I'm reading online it's recurrence chances are very high and primary HS in the brain(her body scans were clear) is extremely rare so I'm not sure if we are better seeing a sarcoma specialist (which we are doing tomorrow) or neuro-oncologist etc.

We found out too (about the brain tumor which they thought was a meningioma) just at the beginning of February, The year so far has been quite bizarre. Is your dad being treated in the UK? 

Dad is being treated in South Africa. Dads cancer is every where, and his consultant had to give a letter stating dads outcome so that his insurance can pay out. It was a very hard letter to read:-( dads outcome is Poor but we are taking everyday as it comes. Dad is only 58. Dads Consultant did say not to find answers on Dr. GOOGLE as each individual is different. I hope and pray that they are wrong regarding your wifes diagnoses and I wish her a speedy recovery.x 

I'm really sorry about your dad, I can't imagine what it's like to have to read something like that nor to have the insurance payout like the future is decided. I don't know enough about HS yet (doesn't seem like many people do) but I don't think they are wrong about her diagnosis because the first biopsy study went to 4 pathologists in major UK hospitals before they came back with it and now that they have removed the whole lesion they are saying it's looking the same though still doing some genetic tests.

I have found many of the limited case studies on PubMed of primary intracranial Histiocytic Sarcoma and what I can deduce is that since shes had the whole thing successfully removed that is a big positive.

Did any of the doctors explain if there's a difference between histiocytic sarcoma and undifferentiated pleomorphic sarcoma (previously known as malignant fibrous histiocytoma)?

It def is a Big positive that they were able to remove it. We sadly werent told much about it. Dad was in hospital for 4wks, they ended up doing radiation. Dads sarcoma started in his soft tissue, then moved into his bones. We are hoping that with radiation and chemo, my dads pain level will reduce so that he can enjoy life, and make memories. Were in the uk but were flying over in 8days to visit my parents for 2weeks. It still very much feel unreal. My mum carries the BRCA2 gene, so we had to go through genetic testing for that. And im so thankful im negative, as I have 2 beautiful girls. Please keep me updated how you and your wife gets on.x