Thank you for replying so fast. Yes the doctors here are saying surgery and she will do a pet scan soon but it's very close to the old tumour and has appeared in just the last 3 months since she did a scan in Jan. 

Do you know the type of doctor it was at the clinic in America? was it hematologist oncologist or neuro-oncologist? Over here I think they are right that surgery, if possible first course. But even thereafter I want to talk to some doctor who has an idea of whether to do chemo and what protocol.

I definately feel like there is no primary doctor over-seeing her care. Since till now it's just scans the neurologist has been overseeing. now there is some activity so we will talk to a neuro -surgeon. She has a Sarcoma doctor in the UK who reviews everything but I feel he is treating this like any other sarcoma just because of the namesake, but I think this diagnosis has more in common with what a hematologist-oncologist would treat. 

Up till now it has been fine since scans were clear and nothing was to be done but frequent monitoring. now that treatment may reactiviate I want to make sure they have a plan not just applying protocols for Sarcoma because of how it's named.

I think it is horrible for patients like your father when the doctors try to get away from the scenario without refering to a better suited physician to treat. My wife and I met Glioblastoma patients with great physicians who would keep fighting for them till the end. I think this diagnosis make them very uncomfortable. 

I Think that you Are right, this type of sarcoma makes Them uncomfortable, but that is just more reason why they should get second opinions. I Think that it is fine that she has a sarcoma specialist but there is much need of a hæmatologist also, the doctors should communicate with each other. 
And yes it is the hæmatologist at the clinic you or the doctors should talk two. If your doctor reach out to Them, they Will ansvars much faster, maybe within a week.  

Yes I am waiting for them to come back with neuro surgeons suggestions as we can't travel to UK because of Covid travel restrictions so we must do it in UAE where we live.

Thank you for sharing your experiences, I can understand how difficult it may be to revisit. For me even though the treatments were almost 2 years ago I feel like it was last month and it is fresh in my mind and  impossible to forget.

Yes. It also feels very new for me. I try not Think about the lack of treatment they gave my father. I just miss him so much. I still cant understand he is gone.

I do Think though that your wife has a Big chance to get complet ely cancerfree, they just need to get her extra treatment this time  even though it very difficult proces and scary. But im sure you both Are strong people who Can through it. 
 

You just need to push the doctors.

Hi Fem

I hope I can help anyone who is dealing with Histiocytic sarcoma.  

There is a doctor at a cancer institute in Boston. He's an amazing man who was very helpful to my husband and I  highly recommend anyone with HS reaching out to him ASAP.

I hope this helps and good luck everyone. Please let me know if I can be of any further help.

regards Jo

Hi everyone,

It's great to see you all being so supportive and helpful, but I just wanted to remind you that sharing personal details, including the names of medical professionals and hospitals, is not allowed on the forum. You can find out more in our terms and conditions.

If you would like to exchange or pass on such details you can do so via our private messaging function. You can find out more just here.

Kind regards,

Steph, Cancer Chat Moderator

Hi Jo_c

could you share to doctors details with me privately since u can't post it directly here.  I've sent you a friend request. Really thank you in advance

I have replied privately as requested.

please let me know if there's anything else I can do to help. Sending you strength and courage  for the days ahead.

Hello utensil. I was thinking about and your wife. How is it going