How to get access to treatments

Dear fellow members I have a few questions which I hope someone could help me with. How can you go about getting a second opinion? Does anyone here receive private cancer treatments and if so is it better then going through the nhs or is it pretty much the same? The term palliative care does this mean that the doctors have given up and no further cancer treatment will be given and will just make you more comfortable as we have a care meeting to discuss care at home and I’m not quite sure what this exactly means and finally I have read so many inspiring stories on the Internet where people have not had luck with treatments here in the uk and have taken trials abroad which have worked quite well, does anyone on here have any information of how I can find information on such trials and the latest treatments. Sorry for the bombarded questions I’m just very confused with the whole procedures. Thank you xx

Hi, here’s my responses to some of your questions but I’m just writing from my own experience. I guess not everyone will be happy with the service they receive. To my knowledge anyone can get a second opinion, usually your GP or Onc can advise and you can also get a referral to say The Royal Marsden or Christies. I’m happy with my palliative care, I accept that being a stage 4 patient I cannot be cured but I have had very proactive treatments, hormonal and chemo.
I’m an NHS patient and know others who have private treatment. From speaking to them and comparing I feel I have been looked after and monitored more frequently than (some) of them.
In case you haven’t already seen it here’s a link to the latest trials on the CRUK website.
Best Wishes.

Hi bm

I’m stage 4 with bone mets and have had most of my treatment privately, although I have recently moved onto hormone therapy which is prescribed through my GP on the NHS - although I have not seen my GP since I was dx’d in 2009!

I can only speak for myself, but yes, I have had treatments that are much harder to access on the NHS. This ranges from fairly minor things (more expensive drugs to control se’s of chemo) to much more substantial benefits - I had a year on Avastin that has just come to an end, and I am in the middle of Cyberknife treatment to eliminate my bone mets. My onc has made it clear that if at any time I am not happy I should ask for a second opinion - she suggested the Marsden. But I have done a lot of my own research and believe I have had gold standard treatment.

I would say, though, that I have early mets and my team has taken the approach that they are potentially “curable” (meaning long term survival) with aggressive treatment - I’m not sure what treatment different from the NHS I would have been offered if my mets were more advanced, maybe none.

I think palliative treatment can mean several things - bone mets are generally only treated palliatively - ie rads when the pain makes it necessary, and hormonals and bone drugs to keep it under control for as long as possible.

I would certainly think it is worth investigating trials - your onc should be able to tell you how to go about this, and find out for you if there are any for which you meet the criteria.

finty xx

Bm, I should add for anyone else reading this that is in the same position as me - I wasn’t offered Cyberknife or Avastin, or the high dose “curative” rads I had last year. I got them by doing my own research, deciding they would benefit me, and making a case for them to my onc. In the case of the rads and Cyberknife, my radiologist took quite a lot of convincing, over several consultations, but is now totally supportive. I do think we have to advocate for ourselves and be proactive in getting the treatment we need.

finty xx

Glad to have you raise these questions of access since finding my way into medical processes does not feel easy - and this forum is definitely giving me confidence with my own initiatives based on info shared. My hospital does not seem too keen on me raising issues or asking for consideration of other treatments so it’s vital that I work out my own ideas - NHS hospitals are very tied to proven cost-effective treatments so it’s not always easy to get access - I hate it when I’ve been quoted “cost-effective” by a doctor and have said, “effective can be defined in many different ways depending on your perspective and a few more good months is “effective” in my terms …”. I have secondary mets that were diagnosed late but am being very active in researching and pushing for treatments along with accepting the non-curative issue.
Advice from people like Flinty and Belinda are so supportive of us - thanks for sharing

I echo the need to keep up to date with treatments and ask lots of questions, also finding an oncologist who will work with you. I have been very lucky- my oncologist at Clatterbridge has always fought to access the best treatment for me, including applying for PCT funding for Avastin last year, and just getting approval from the new cancer drugs fund for Lapatanib. She has also suggested a referral to Christies so I know what stage 1 and 2 trials are going on. You are completely entitled to ask for a second opinion, and most doctors will not have a problem with this.

Also, palliative care can be given along active treatment- it’s emphasis is different in that it focuses on controlling symptoms and maximising quality of life rather than controlling the secondaries directly.
best wishes, Nicky

How can you get a second opinion ? = Decide where you would like to get the opinion from, by doing your research, and either tell your Oncologist or your GP that you wish to have a second opinion with …
Is private treatment better than private ? = It’s debatable. I’m and NHS patient, but my Oncologist also works in Harley Street, so on that count there is no difference. However, like Finty, I have had Cyberknife, but mine was funded by charity, as funding is very restricted in the NHS. (so on that count private insurance is beneficial).
Does palliative treatment mean that doctors have given up, and no further treatment will be given? When someone is treated palliatively, it means that a cure is no longer the objective. However, treatment is still given, to try and prolong survival, and control discomfort. Note though that not all stage 4 is treated palliatively these days. Google the term oligometastatic, to learn more.
How to find links to trials and latest treatments? = See Belinda’s link below. But word of caution, trials can be a double edged sword. On the one hand they can provide access to revolutionary treatments that can potentially save lives, but on the other once someone enters a trial it can mean excluding the possibility of other treatments. For example if you were involved in research involving a particular drug, you might not be able to take another drug, in case it interferes with the results of the trial.