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My husband was diagnosed with Retroperitoneal Sarcoma on the 7th October at the Park private hospital, as it was not a condition they could treat he was referred to an MDT meeting which took place on 10th October which advised referral to the Retroperitoneal Sarcoma Service. That referral letter was sent 14th October and received by the Sarcoma Service on the 18th, I spoke to them today and they have made an appointment for 4th November - this just seems a long time to have to wait? and will be 4 weeks after diagnosis! Is this right? Is there anything we can do? It is our first experience with cancer so we don't know how things work although a lot of the delay was caused by the Consultant at the Park.
Hello, Sindystar. Thank you for posting your question. This must be a stressful time for you and your husband but I’m glad to see that you’re getting some support from other members of the online community
I know that 4 weeks can seem like a terribly long time when you are waiting for treatment to start. Cancers are not likely to grow much if at all between diagnosis, staging and grading. It’s very significant that the multidisciplinary team (MDT) meeting has already taken place. Based on any scans or other tests considered at the meeting the sarcoma MDT should be able to draw up a custom-made treatment plan based on an overview of your husband’s situation.
Once a treatment plan is proposed then the government’s waiting time target of 31 days to start it should apply.
The PALS department at the NHS hospital where the sarcoma service is based should be able to put you in touch with a clinical nurse specialist (CNS) who may be able to give you an idea of what to expect at the consultation on the 4th of November.
I hope that this information is of some help. If you’d like to talk to an experienced, understanding cancer information nurse then you might want to call our free Macmillan support line any day of the year between 8a.m. and 8p.m. – Best wishes, Bill (cancer Information Nurse)
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