Struggling with diagnosis given this week

Hi Levens,  I was on immunotherapy and I looked well felt well, but obviously had bad days, these new drugs are amazing I've just come off treatment after 5 years. There is always HOPE, I'm  N.E.D. now, so hang in there and live your best life. XX

Moi

Thankyou  I try my best.  Glad to hear your positive story

Hi RoRo & Sparkles, I don't think we have met yet. A warm welcome! I've just come back from a lovely two weeks holiday in Filey and haven't caught up yet. The hardest thing is telling your children, no matter their age, it is very difficult. The first thing I would say is don't go to Mr Google for information as their site is well behind the times regarding how long people live and their statistics are ancient. Please let your children know as this no doubt is what they will be tempted to look at, if they haven't already!

Secondly, apart from the phone number you have mentioned do you have any other contact numbers? If so I would try them and tell them you are struggling because of the lack of information. Or contact the clinic where you were seen. As you say, you want to know what the Plan of Treatment is, so you can be positive moving ahead. I didn't ask for a prognosis but was told I had 5-7 months  left and to get my affairs in order. A Power of Attorney is the most important, if you have a Maggie Centre or McMillan drop in place, I would go there if you haven't managed to find where others mentioned. We are incurable but treatable. I couldn't have Radiotherapy or Chemotherapy as my cancer doesn't respond to either. Ask about clinical trials, ask if there is anything you can try to prolong life. That's what I did and my Oncologist found a Trial for a never tried before drug. I was on it for 3 & a half years and came off it in Sept 2016 yes I was diagnosed in 2013 and I'm still here! Where there's life there's Hope. I'm sure things will get better once you speak to someone who can advise you and I would be questioning the no RT on NHS that's just ridiculous. We have to fight for our lives but in the end, it is worth it, they are coming up with new drugs and treatment all the time. The next one could suit either or both of you! Please let us know how you get on!