Useful tips and links

I'm sometimes asked by people who are newly diagnosed with cancer or who have LMS if there are any useful tips or links that I can share with them. On this page I've tried to summarise what I consider the most useful information for people in this situation.
Hints and Tips 
Seeing you oncologist:
  • Always try and take a family member or friend to the consultations with you. Whenever I have a consultation with my oncologist Katie comes along with me as between us we can recall much more accurately and completely what has been discussed. Katie gets to hear exactly what the oncologist says so there's no need for me to try and provide a summary of the consultation to her afterwards. I also believe that because the oncologist knows that Katie comes to all of my consultations he is confident that she fully understands my situation and my wishes should I ever be too ill to represent myself.
  • Make a written list of questions that you want to ask and go through this list during the consultation. I've found this really helps to avoid forgetting any important questions during the consultation. Oncology consultations can involve receiving news that is quite shocking, it is very difficult to recall a list of questions if you're struggling to get to grips with some unwelcome development in your illness. Having a written list really helps here.  
Managing treatment:
  • Be your own advocate. Ideally within the healthcare system there would be a single professional with responsibility for the whole of your care, unfortunately this is not the case. As a patient it's important to realise that you need to be your own chief advocate. Healthcare, like any activity involving large and complex organisations, sometimes runs less than smoothly, it is important that you as a patient keep a close on eye on what's going on and that you question any aspect of your treatment that seems unusual or that deviates from what you've previously experienced as normal practice. You need to be prepared to chase up on appointments if they are not made and to remind doctors and other healthcare professionals if you think they have forgotten anything that has been previously agreed with them. Nobody has a bigger stake in your treatment than you. 
  • Treat healthcare professionals with courtesy and respect. When you are not feeling well and there are administrative or other errors that leave you frustrated and disappointed in the care you are receiving it is all too easy to get angry and to be rude to the healthcare professionals you are dealing with. If you get a reputation as an angry and awkward patient healthcare workers are unlikely to want to go 'the extra mile' to help you out. This doesn't mean that you shouldn't complain when things go wrong but try to do so in a constructive, calm but firm way.
Sarcoma/Leiomyosarcoma specifics:
  • Make sure you are being treated by a sarcoma specialist at a sarcoma centre. Sarcomas are rare cancers, most general oncologists will have very little or no experience of treating a patient with the specific form of sarcoma that you may have. There is strong research based evidence that shows that patients do best when treated by specialists in sarcoma. In the UK there are a number of sarcoma centres staffed by sarcoma specialists, you can find the details on the British Sarcoma Group website.
Engage with your local hospice:
  • If you are terminally ill then engage with your local hospice at the earliest opportunity. You may feel very uncomfortable with the idea of engaging with a hospice, I know I did, however the services a hospice provides can be of tremendous benefit to both the patient and their family members. Hospices provide services and expertise that are not necessarily available from other parts of the health care system including a level of expertise in symptom, side effect and pain management that, in my experience, is of the highest quality.  If you are in the UK then your GP should be able to refer you to your local hospice.
Financial issues:
  • Get free prescriptions. If you are in the UK and you have cancer you are entitled to free prescriptions. Your GP or your oncology centre should be able to advise you on how to get the medical exemption card that you need to take advantage of this. At the time of writing I take around 140 pills a week so my prescription costs would be considerable if I had to pay for them!  
  • Get advice on finance and benefits. For many people having cancer can lead to considerable financial hardship. For advice on cancer related benefits try contacting the cancer information centre at your hospital or check out Macmillan's website here
Useful Links
General links on cancer:
  • Macmillan Cancer Support. Excellent and comprehensive advice for cancer patients and their carers. Macmillan provide very good information on the main types of cancer treatment including the side of effects of individual chemotherapy drugs. The site also contains a good, impartial overview of many of the most common complementary therapies used by cancer patients which is well worth reading if you are thinking of trying one of these.
  • Cancer Research UK. Provides a lot of good quality information on all aspects of cancer. I particularly like their blog which often contains more in-depth analysis of cancer related news stories than provided by the general media who often fail to fully represent the facts behind some of the stories. The Cancer Research UK site offers an added level of analysis that provides a more accurate view. 
Sarcoma specific links:
  • Sarcoma UK. A UK sarcoma specific charity providing useful information on the major sarcoma subtypes and on sarcoma treatment. Their support and information web page has a list of sarcoma support groups and details of how patients can submit questions to sarcoma UK via telephone and e-mail.
  • The Liddy Shriver Sarcoma Initiative. A US based site that contains a wide range of information on sarcoma. It has a very good electronic newsletter/periodical which contains the latest news on sarcoma research and trials.
  • European Sarcoma Group Clinical Practice Guidelines for Soft Tissue & Visceral Sarcomas. These guidelines outline a best practice approach to the diagnosis and treatment of soft tissue and visceral sarcomas including LMS. They are produced by a large group of expert sarcoma doctors from around Europe. Specialists from the USA have also been consulted regarding some elements of the paper. If your doctor proposes that your treatment deviates from these guidelines you should ask them why, there could be a good reason but in general research suggests patients do better if their treatment follows the guidelines.
Leiomyosarcoma specific links:
There are some useful LMS related pages on some of the larger, non-LMS specific sites:
Websites that are specific to LMS are few in number and are less comprehensive than some of the sites above, this reflects the rare nature of the disease and the extent to which these websites rely on the voluntary efforts of current or past LMS sufferers to run and maintain them. Despite these limitations they do still offer some really useful information.
I recommend that any LMS patient consider joining the ACOR online discussion group on LMS. This group consists of a community of LMS patients who exchange messages covering every aspect of the disease from new research, managing side effects, making treatment decisions, emotional issues and support etc. You can sign up to join the group here (click 'Subscribe' on the right hand side of the page), you can just read the posts of others if you like - you don't have to make posts yourself if you'd prefer not to.
Lymphoma specific links:
Li-Fraumeni Syndrome (TP53 gene mutation) specific sites:
  • The George Pantziarka TP53 Trust website. A very good site for anyone who wants to know more about Li-Fraumeni Syndrome (LFS). LFS usually results from mutations to the TP53 gene and causes those with it to have a much higher risk of developing cancer. This is an extremely rare condition and there is very little information available on the internet so this site is a key source of information. It includes a forum where those with LFS can exchange questions, experiences and messages.
Specialist sites on cancer research:
  • PubMed. This site provides access to a huge list of research papers relating to clinical trials, research reviews etc. It can be easily searched. I use it to understand the research findings related to treatments that I might be considering. A excellent resource.
  • The Institute of Cancer Research. One of the world's leading cancer research bodies, I find their news service makes for interesting reading.
  • Anticancer. Covers a wide range of cancer related topics, often looking at some of the more unconventional but still science based treatment opportunities for the disease.
Other links that may be of interest:
 Last updated September 2014.

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