Sarcoma Diagnosis Friday - What next?

No weve had nothing from anyone _ I rang urology and she said she "thinks" the recent ct scan is fine but then we were also told that she didnt think it was cancer, even after it was removed so we just dont know what to trust anymore. They just said that they didnt know what would happen and that they still had not heard from the Sarcoma team either - we dont even know who his care is under as it could be either swansea or Birmingham - so stressful!

We live staffordshire, referred to birmingham.  They said they treat many all over country including Wales.  Ring macmillen and pour your concerns out with them, you wont necessarily get an answer obviously but it does help to offload and they are available to physically talk to you.  Your GP won't be of much help.  It's rare and they rarely see many sarcomas in their career.  We can all offer advice here and experiences which can be helpful.  The trust thingy is a major problem we have encountered, four consultants with varying theories,, each credible but then contradictive.  Long long story but it's awful when you get to the point of what you are hearing you question is it factual?  

Hi Sierra 101

My tumour was originally diagnosed as a cyst they tried to remove it as they were doing so they discovered it was a cancer so they sowed me up after taking a biopsy of the growth. The tumour was identified as a Sarcoma. I was referred to a Sarcoma Unit for the operation to fully remove the Sarcoma.

In my case the error was recognised whilst being operated that it a was cancer.

I am sure the procedure your husband under went will be analysed as will any matter that was removed. 
Like me the procedure can be redone with a suitable margin around the tumour can be carried out.

Thank you - we are even further confused today. We have been informed by urology that it has been referred to the Birmingham MDT - Birmingham are claiming never to have heard of him :-( A nurse from Birmingham called us and basically told us not to worry as he has had surgery and that will be the end of it and he will just go under surveilance. I asked would they not need to do further CT scans etc and she said no gold standard is to fully excise and why are they even referring if it has been removed?  But she has never seen his records and has never heard of him so how would she know? We have been back in contact with our Urology team, who are so wonderfully caring and I do think that they have referred it by the conversations I have had................. I feel completely lost and do not know where to turn. 

Can they refuse the referral and leave it with urology just because its been removed? Would that be the end of it? I am so confused and have no idea whats going on 

Thank you - we are even further confused today. We have been informed by urology that it has been referred to the Birmingham MDT - Birmingham are claiming never to have heard of him :-( A nurse from Birmingham called us and basically told us not to worry as he has had surgery and that will be the end of it and he will just go under surveilance. I asked would they not need to do further CT scans etc and she said no gold standard is to fully excise and why are they even referring if it has been removed?  But she has never seen his records and has never heard of him so how would she know? We have been back in contact with our Urology team, who are so wonderfully caring and I do think that they have referred it by the conversations I have had................. I feel completely lost and do not know where to turn. 

Can they refuse the referral and leave it with urology just because its been removed? Would that be the end of it? I am so confused and have no idea whats going on

Hi Sierra 101

If Urology has identified a Sarcoma then it has to be referred to a Sarcoma Unit.

The Sarcoma Unit will then be in touch with you to discuss further treatment which is all laid out in guidelines to all Sarcoma Units with England and Wales .

If you Google Guidlines for the treatment of Sarcoma in the UK it will provide all the information about treatment that has to be followed for all Sarcoma patients .

I think I waited three weeks before I was contacted with the full breakdown of my particular Sarcoma by the Sarcoma Unit I  then had to travel to Liverpool a week later to be seen by a Surgeon to have the tumour removed.

The passing on of information from one department to another or from one hospital to another is not seamless unfortunately.

Thank you - i appreciate that - at the moment they are saying that they will make the decision when the cell type is back... but that the delay with pathology means that it could be ages. I think it could be months before we hear anything from the way they are talking. 

I agree also, regardless who removed it, regardless if your latest CT clear, you have to be under a sarcoma specialist.  We are going to have our 3 monthly scan done locally.  As soon as done we contact our sarcoma nurse in Birmingham and then they be on the ball to chase and get copy of results.  They will then report back to us either clear or if something they not happy about then  we will be back with them for further investigations/action.  It's the specialists that dictate/deliver treatment.  TBH once you have sarcoma you are under surveillance with them for life. 3 monthly for 2 years 6 monthly upto 5 years and annualy thereafter. It being rare they are as invested in keeping you under their care as you are, you are part of their research in ultimately finding a cure for this beast. 

Sierra 101

Sheba 72 reflects my treatment once my Sarcoma was identified.

My Sarcoma Specialist in Liverpool dictates my treatment I have a local specialist but he is also directed by the Sarcoma Unit in Liverpool 

I live in the Isle of Man  I have CT scans on the Island ️  it they go to Liverpool for analysis. I have to go to Liverpool every three months where I have a chest X-ray then see the specialist. I had a suspicious lump on my wrist which was scanned on the Island then assessed in Liverpool I have had a further scan in Liverpool in the last fortnight and a biopsy.

I await that result which will be in mid February 

I Agree with Sheba 72 I will be under surveillance by a Sarcoma Unit for the rest of my life 

Beautiful isle of man.  You are blessed where you live xx a few happy holidays there, hoping to return one day.