Has anyone outlived their prognosis?

Hi Lynne, I can’t answer your question as I’m only a month into this journey but I just wanted to let you know I’m here and I understand your fear.  There are bound to be people jumping on soon who can answer your question.  I wish you every good fortune xxxx

Hi Lynne_1961

I'm so sorry to hear that you have had such a prognosis. In my own case, although I have an incurable bone marrow cancer my haematologist can only say that different people go down at different rates. I can reassure you that I have come across many people in the 4 years I have been in this group who have outlived what we affectionately call their sell by date by as much as 5 years or more. It wouldn't be right for me to name them because of confidentiality but there are some around today who are probably busy because of the run up to Christmas. I am sure they will reveal themselves in due course.

Meanwhile Lynne, stay around because this group is full of wonderfully supportive beautiful people who will embrace you into the incorrigibles group ( another name we call ourselves )

Yes Lynne, sometimes we need to hold the family together and have a stiff upper lip when we really want to let go and you can do that here and receive lots of support. Here you won't be told not to be silly or that any of us can be knocked down by a bus. For me, and others here, that is the worst thing to hear, it lacks compassion and I feel like saying "Is that supposed to make me feel better?" You can also ring a nurse and speak to them.

As you say, every scan is terrifying, so before you go, let it be known and you will receive bucketfuls of support and well wishes Lynne so when you go, you'll hopefully feel that you are not alone and you have lots of arms around your shoulders. 

Take care Lynne and stay safe

Tvman x

Well Lynne_1961, when diagnosed with NSCLC stage IV in October 2015 they said 10 to 12 months...well i'm still here and life a happy life!! You're a fighter also. Pet

Hello Lynne 1961.

I am going to take a bit of a risk here but nearly all the people I have come across on here have beaten their forecast. A lot of that is down to new treatments being discovered or tried out. I was told 8 months to a year in 2017, here I am!

Of course you feel anxious about the future, I certainly do, probably every day and I bet we all put on that same brave face.

You have already been through a lot so you probably are a lot stronger than you think.

Bloody scans, I hate wating for one then I hate waiting for the results then I hate waiting for the next one! A bit loopy eh?

You are doing OK, try to have a nice break. Xxx

Thank you MazLC for your reply, it is a comfort to speak to people in similar situations to yourself. You too must feel anxious only one month into your journey, but my goodness what a lot you have been through. I wish you all the best too. Thanks again xxx

Thank you Tvman for your reply you fill me with hope, and I love your humor, something we all need. It is lovely to hear that you have surpassed your sell by date ( love that) . Thanks again for your support. It does help to feel you are not alone. All the very best. Hope you have a lovely Christmas xx

Wow Pet1968 that is fantastic to be here 5 years on, and living a happy life, long May it continue, it gives me such a lift to hear everyone’s experiences. Thank you xx

Norberry thank you so much for your support, your message fills me with hope. Most days I try to be strong and always in front of family and friends. They always say I am so strong. They have no idea what’s going on in my head lol. Good to know I can come here and share my fears with people who really know where I am coming from. Hope you have a lovely Christmas and thanks again xxx

Hi Lynne_1961, There are lots here who have outlived their "sell by date" as Tvman has said!

I was told May 2013 I had 5-7 months to live as I had Stage4 Malignant Melonoma with spread to the Lymph Nodes in groin, chest, abdomen and pelvis. I also had a tumour that had eaten the bone between the elbow and shoulder in my right arm and was booked in to have an op to put a pin in so I didnt loose the use of my arm. I also had MM in my right eye causing blurred vision that had been put down as inflamation. I was told apart from surgery to insert a pin, if I had a groin dissection, I  may manage to see Christmas 2013! Nothing else could be done! 

I couldn't just wait for it to happen, I had heard about Drug Trials and asked if there was ANYTHING I could try, I wasn't giving up without a fight. I did get on a Trial but it was not easy!  I have since had my 12th surgery, last year on my spine and am still here to tell the tale! I wish I had a pound for every time I was told how brave and strong I am but I am not. I don't  show it in front of family (except sometimes my husband) but every time it's time for a scan, i still get Scanxiety! It has got better over the years but it still does happen! If you think how magestic a swan looks on the surface of the water but noone can see the webbed feet under the water kicking for dear life! Thats me!

This is where to come with thoughts and worries when you dont want to make your family anxious as they suffered enough the day you gave them the news! We are all in this together and many virtual friendships here in this group, help us to survive!

Sending a virtual hug to everyone!

Hi Lynne, I am new to the community. I was diagnosed with inoperable Small Cell Lung Cancer on 2nd April 2019 (funny how that date sticks in my head! lol) I told them at the time I do NOT want to know my prognosis, I already realised my life expectancy would be reduced. I had six rounds of chemo, 10 days of radiotherapy and my scans were clear for 8 months when the cancer came back. They weren't sure the second round of chemo would help me as it only works in 2 out of 5 people. I told my oncologist to please not write  me off, I was willing to go for the second round. Well that finished this August, my first scan was clear, I have just had my 2nd one and I have a phone call with my oncologist on Wed 23rd December - and really anxious about the results. My husband and I have decided that we now do want to know "the number". However after reading the thread and seeing how many have outlived their prognosis, this definitely gives me something to hope for. Once I know the number I will aim to continue longer!!

I was 59 when I was diagnosed, had my 60th birthday 4 months after diagnosis and I am now 61 and I intend to live until I am at least 70! God willing!

God bless and a very merry Christmas to you!