I am newly diagnosed with an aggressive liposarcoma in my arm. I can literally see it growing. Tests on whether it has spread are inconclusive. Each time I feel I could cope with it all I seem to get another bit of bad news. No treatment dates yet due to NHS waiting times for radiotherapy. Just looking for any positives (if there are any) or advice on coping with uncertainty from people who have been through this? They are now looking to possibly operate before radiotherapy . 57 year old mother of a 15 year old I would really like to be around to support for more than a few months
Hi LJI,
I'm so sorry this has hit you for six. And it can be a postcode lottery alas too, as some health authorities can finance a shorter waiting time, whilst others have longer waiting lists.
However, the one positive that I can give you is that nowadays there is treatment for every cancer. Which wasn't necessarily the case just a very few decades ago. (I vividly remember, 50 years ago as a young teen, visiting my uncle in hospital and I walked past the children's leukaemia ward on our way to him, and someone told me, "all those children are going to die" - which really hit home to me...but, look where that is now with childhood leukaemia - almost all go on to live!)
There are people on these forums who are at the extreme end, which is "terminal", but they are living not just months but years in some cases. And living a reasonable quality of life. That's just the extreme. So many cancers are caught earlier these days and even though yours appears aggressive and to be growing, it's not necessarily the case that it will have spread even at this stage - although I can feel your terror at believing it might have or indeed, that it could.
One thing I'd suggest on a practical level, is to push for this to be taken forward. "Possibly" and "waiting times" are not words you want to hear right now. Try 'nagging' them - ie, phoning, every day if you need to - explaining it is visibly growing. You could also ask if you can be seen and treated in another health authority area. (I believe this is now possible but it's not very well publicised, for obvious reasons!) - if you could travel say, 50 miles outside of your area to get to a hospital where they would treat you a lot quicker than "possibly", push for that if you can. Try and get a referral for this if it's a practical option for you.
One thing I've seen come up many times on here - and I have successfully used this method myself, for a delay - is to keep ringing them until they do come up with an appointment for you. It can work! I've tried it even at my GP, where you have to plan to be ill two weeks in advance to even get a phone consultation! - if you are "pushy" (I don't really like that word, but cannot think of a better one!) and persistent (that's a better one!), where they appear to have no slots at all, they can often find you a slot that has "just opened up unexpectedly as we were talking" (yes, I've even had a GP receptionist say that to me!!) .... so don't sit and wait, but act proactively. There's no guarantees that it will definitely get you treated asap, but you won't know until you try it, and importantly, it will also make you feel a lot better for doing something positive to move things forward.
Good luck - keep us posted please on how things are going for you? 
I am not a medic, but I have seen and read so much from people with cancer that I will stick my neck out and say that any and every cancer is treatable. "Curable" is an arbitrary concept. The medics always seem to say - at least the ones I have dealt with - that having removed my cancer, I "am cured". I deem this as saying that the primary cancer, all that can possibly be seen on any tests, and in the surgery, has been removed, there is no spread seen or tested, and the cancer has gone. However, I am open to the fact that in 5 years, or 10, or 20 if I live that long, that I may get a resurgence of a tiny invisible grain of cancer in the same spot all those years later, or indeed may get an unconnected cancer somewhere else in my body. So I personally never rely on this "you are cured" thing.
The uncertainty is indeed way worse than the treatment, and pretty much everyone I have come across says this. Once you know which direction this is taking, you have a tangible plan and you have hope, The hope is the best thing of all. Meanwhile, keeping you waiting around like this is eroding your positivity and causing you unnecessary worry.
I am glad you are pushing for resolution but please try and keep at this. You are not a number on their books. You are someone who needs treatment and who needs it sooner rather than later, because all medics do tend to agree that whether the condition is early or more advanced, the earlier treatment begins the better chance you have of a good outcome. Continuing to fight for your right to treatment, is something you are in control of, even if everything around you seems to be out of your control. And being in control feels and is good.
Sending you hugs
