Living with Sarcoma – ask an expert 

To mark Sarcoma week (3 – 7 July) we are hosting a web chat with our lead sarcoma nurse Anne McTiernan.  Anne works as a clinical nurse specialist in the sarcoma service at UCLH and has several years’ experience of providing care, support and information and advice to patients.  UCLH is home to the London Sarcoma Service, one of the largest sarcoma services in Europe, with an international reputation for providing care of the highest quality.

Joining a webchat is easy – simply come back to this page at 1.45pm on 4 July and type your question – Anne will then answer it.  You can also submit your question to uclh.webmaster@nhs.net in advance if you prefer.

Please read the transcript of the web chat below.


1:13 UCLH: 
Good afternoon. Our web chat 'Living with Sarcoma will begin at 1.45pm and lead sarcoma nurse, Anne McTiernan will be here to answer your questions.

You can submit your questions early and Anne will pick them up here when the web chat begins.
 
1:45 Anne McTiernan: 
Hi. My name is Anne and I am the Lead Clinical Nurse Specialist for Sarcoma at UCH. My role is to support people who have been diagnosed with or are receiving treatment for sarcoma, and I am here today to take your questions on living with a sarcoma.
Please feel free to join in!
 
1:47 [Comment From Sean: ] 
I had radiotherapy and surgery for a liposarcoma on my thigh removed a few months ago. My doctor has told me I will need a check-up every 3 months as there is a chance it can come back. Is there anything I should be doing to stop the cancer coming back?
 
1:51 Anne McTiernan: 
Hi Sean. Well done for getting to the end of your treatment. There is nothing specific you need to do for you cancer, but the best thing you can do after a diagnosis of cancer is to maintain a healthy lifestyle, which includes eating a well-balanced diet, including 5 portions of fruit or vegetables a day, and taking regular exercise. If you are a smoker you should also consider trying to stop, as although there is no association with sarcoma and smoking, stopping will reduce your risk of other cancers in the future.
The NHS living well website has lots of helpful tips on how to achieve a healthy lifestyle, and is worth a look. http://www.nhs.uk/livewell/...
 
1:52 [Comment From Cillian: ] 
Are there any sarcoma clinical trials can get onto?
 
1:58 Anne McTiernan: 
Hi Cillian. There are a number of clinical trials open to people with sarcoma , which vary from the type of sarcoma you have, or the stage of your disease. Your treating team will normally be able to give you an idea of the clinical trials that are available to you. Cancer Research UK normally have a list of current trials open for sarcoma patients that you can access on their website, but Sarcoma UK can also talk you though specific trials to help you work out if they are the right trial for you. Their helpline number is 0808 801 0401. Good luck
 
1:59 [Comment From gennifer A: ] 
I'm interested to know if alternative medicine can help. My friend insists on turmeric to manage her cancer but I just don't know if it's false hope or valid?
 
2:09 Anne McTiernan: 
Hi Gennifer.
There is a lot of information out there about various alternative therapies, including turmeric, in patients with cancer. However there are no robust clinical trials showing that they work, and certainly for some of these therapies the rationale and cost of them makes them slightly suspect, especially if you are stopping conventional therapies to pursue them.
This can be different to complementary therapies, which are often used alongside conventional treatment, to help with the symptoms.
In general we would always advice speaking to your clinical team about alternative and complementary therapies, and they can talk you through them. Macmillan Cancer Support also have helpful information on their website.
 
2:11 [Comment From JC: ] 
My friend has recently been diagnosed with a sarcoma and is feeling lost and afraid. What can I do to help?
 
2:22 Anne McTiernan: 
Hi JC.
I think it can be really difficult to know how to help or what to say when a friend or family member gets any diagnosis of cancer. Generally I would start by acknowledging with your friend just how difficult it is, and that you are there for them if they want to talk about it. Some people will want to talk about their diagnosis all the time, others wont want to talk about it at all. Just by acknowledging this, you are giving them the space to do what they want to do, but they know you are there for a chat if they want to.
If they continue to struggle their treating team will normally be able to point them to more formal help.
Occasionally practical things can also go a long way - helping with the school run or 'sleep overs' for people with young children, or offering to help them with the weekly shop if people are just home from surgery can allow you to help in little ways.
 
2:23 [Comment From Greg: ] 
My specialist has told me that my sarcoma is rare. Does this mean you know less about it, or that it is less curable?
 
2:25 Anne McTiernan: 
Hi Greg. Not at all!
Although sarcomas are rare, and there are lots of different sub-types of sarcoma, a lot is known about them, including where they are likely to occur, how they are likely to behave, and what is the most effective treatment for them.
There is also a lot of National and International collaboration in trying to work together to come up with better treatments.
The most important thing for you and your sarcoma is that you are being seen by a sarcoma specialist, who is very familiar with this type of cancer. All patients with sarcoma should be referred to a sarcoma specialist. If you are not under the care of a sarcoma team you can ask your GP or treating hospital to refer you. Sarcoma UK can help guide you with this process and tell you where you nearest specialist centre is. 
 
2:27 [Comment From Tigana: ] 
I have just finished my chemotherapy for an osteosarcoma. I still feel really tired, and struggle to do normal things. When will this get better?
 
2:30 Anne McTiernan: 
Hi Tigana.
Well done for getting to the end!
Most people will gradually start to feel better about a month after their last course of treatment, which will slowly improve more and more over the next few months.
However the time it takes can vary, with most people feeling relatively well and able to do normal things about 3 months after the end of their treatment, but for others it can take much longer.
Trying to do a little bit every day, such as going for short walks and gradually building this up, and eating a well-balanced diet can help.
 
2:31 [Comment From Donavan: ] 
I have been seeing my GP for the last few months for a lump on my leg. After about the 4th visit when I saw a different doctor, they finally referred me for some tests and I have now been told that it is a sarcoma. I am really worried that I have lost precious months in getting to my diagnosis.
 
2:33 Anne McTiernan: 
Hi Donovan
Unfortunately your story is very familiar, and many sarcoma patients tell us the same thing. For most GPs, they will see lots of patients with lumps and bumps all the time, but may only ever see one patient with sarcoma during their whole career. Generally the advice to GPs is to consider a referral to a specialist centre if the lump is >5cm, increasing in size or painful.
Whilst we would always favour getting a diagnosis as early as possible, diagnosing your tumour later is unlikely to change the treatment you would receive or how you respond to that treatment, although we will ever know that for sure.
 
2:34 [Comment From Maisie: ] 
I have just started treatment for an synovial sarcoma, and want to do everything I can to help myself. I have seen some information about eliminating all sugar from my diet, and wondered if this might help?
 
2:36 Anne McTiernan: 
Hi Maisie.
There is no evidence that eliminating sugar from your diet or any other specific diet helps with cancer, and generally we would not recommend you remove food-groups from your diet. Therefore the general advice is that you should have a good, well balanced diet, in order to keep your body healthy, to help you get through your treatment as well as possible. If you have specific questions about diet, your clinical nurse specialist can help, or your hospital may have a specialist cancer dietician who can see you, who can advise you further.
 
2:36 [Comment From Bridgette: ] 
My doctor wants to put me on to a tablet called Imatinib for my sarcoma (GIST). I am hoping to go on holiday in the next few months will I still be able to go?
 
2:39 Anne McTiernan: 
Gastrointestinal Stromal Tumours (GISTs) are a specific type of sarcoma that can respond well to tablet treatment called imatinib. Most people on imatinib live a relatively normal life and find they can continue to do all the things they normally do. However some people do struggle a bit with side effects (such as fatigue, and diarrhoea) and the dose of the tablet may need to be adjusted to get the balance right. Once you have been on the tablet for a few weeks, you should be able to get on with things as normal, and plan your holiday. Your treating doctor will be able to advise you more on this.
The only extra thing you will need to consider is travel insurance. Patients who are on treatment for cancer do sometimes struggle to get insurance and have to pay more for it. Macmillan Cancer Support or Cancer Research UK can help advice you on getting travel insurance with a diagnosis of cancer
 
2:40 [Comment From Verity: ] 
I am just starting treatment for my sarcoma, and wanted to know if I can continue to work whilst I am having treatment?
 
2:43 Anne McTiernan: 
Hi Verity
You don’t say what sort of treatment you are about to start. Whether people can still work during their treatment will vary from person to person, and depend on the type of work you do, and the type of treatment you are having.

Most people having surgery will need some time off work, and your surgical team can give you an idea of how long you may need.

It is possible for some people having radiotherapy to continue to work, however most sarcoma patients are not able to work, as they have a long way to travel for their daily treatment (often taking a few hours to get there and back) and you will feel tired. If you are keen to work, and your employer is flexible enough to allow you to work part time for some of your treatment, many people will feel better for working as it gives them some “normality”. However this is the exception rather than the norm.

Patients on chemotherapy are the least likely to be able to work, as you may feel tired for much of the time, and at times your immune system will be low. However for those who want to work, if your employer if very flexible, allowing you to do a few hours a day for a few days a week, you may enjoy working – although most jobs can’t be this flexible. Hence most people are simply signed off for the duration of their chemotherapy

For patients on tablet treatment with imatinib for a specific type of sarcoma called a GIST (gastrointestinal tumour) most people can work as normal.

Good luck with your treatment!
 
2:44 Anne McTiernan: 
Unfortunately that is all we have time for.
Thank you for being with us today and for all those who sent questions.
Anne
 

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