My husband was diagnosed at the end of November with Histiocytic Sarcoma. His consultants haven’t really been able to give him much prognosis because of how rare it is. All we really know is it’s very rare and very aggressive. He’s currently responding well to his chemotherapy but the lack of information online is really frustrating.
Does anyone have any sort of experience with this cancer?
Hi @KMuir I am so glad that you have found us,
I do not have any experience of this cancer but I can remember feeling so isolated, being the only one in the world etc.
It is always so difficult to get a prognosis. when I was diagnosed, with another blood cancer, my prognosis was 5-10 yrs, that was 19 yrs ago.
We are also all special, individuals with unique medical and family histories.
Perhaps your husbands medical team are best placed to answer your questions, I find sometimes I have to be ‘pleasantly assertive’ sometimes.
Our forum is also here for you too, you are obviously very caring, so please look after yourself as well as you look after your husband.
I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses just in case they can add something.
I really hope someone will be able to share their experiences.
A very warm welcome to our forum. I too am also very pleased you have found us & hope you are doing okay today?
I am so very sorry to hear of your husbands diagnosis. We understand how devastating a diagnosis of any cancer type can be. However when a disease is classified as very rare, I would imagine that finding reliable information must also add another level of frustration and worry for you both.
After some research, I can also see that online resources & information is very sparse for patients & families.
I do wonder however if your husbands treatment team offers contact with a clinical nurse specialist at all?
I ask this, as often the cns team can be a great resource of information and may be able to shed some light on any national specialist or support groups.
We do understand that information available online is only reliable if there is enough cases with treatments to evaluate comprehensively and this can often be why it can be difficult to find resources through the internet.
In case this may be helpful to some degree, i have linked below to a UK charity which covers Histiocytosis as an umbrella term for a rare group of diseases. Despite not mentioning sarcoma specifically i wonder if potentially making contact with this charity may lead to further information-Histiocytosis? – Histio UK.
As @Erica has perfectly highlighted- please do know that all of us, both within the forum and on our helpline are very much here for you & your husband should you ever wish to talk anything through at anytime- Blood cancer information and support by phone and email | Blood Cancer UK
Best Wishes, Lauran