Have lived with cancer for 16 yrs now. Never give up

Hello all.  I ve been living with cancer ( first bowel then later lung) for 16 years.   Many operations, 3 rounds of radiotherapy, stereotactic radiotherapy etc etc.   no chemo, which I refused 16 years ago!

I think I must have had around 38/40 scans by now, the team have been wonderful.

I just wanted to say never give up, they can keep you going for years these days.  New treatments, targeted genetic therapy is becoming the norm.

chin up everyone!

 

  • Thanks for posting this. I'm 41 and living with cancer. I'd like to hope I can live for 15 years. X 

  • As my surgeon says 'none of us get out of here alive'

    but anything is possible.  ...  I wish you hope, luck and peace. 

  • I was diagnosed with secondary metastatic breast cancer 2 weeks ago and feel so confused as no cure but can be managed so fingers crossed i get the average 3 years survival rate i am 56 and not dealing at all with my situation.  Wish mine was treatable then there would be a light at the end of the tunnel. So got to get more positive with my thoughts i was ok after my diagnosis but since the weekend i have been struggling.

     

    sending much love xx

  • So sorry to hear this - just to say I was given a very poor prognosis and not expected to live beyond 5 years - that was 16 yes ago and I'm still here.....

    stay strong

  • Thanks for your reply it has given me hope think the shock of the diagnosis has hit me and also just started taking letrozole and one of the side effects is feeling low so time to sort myself out and get positive xxx

  • You are an inspiration!

    can I just ask what stage lung cancer you have?

    Take care and keep fighting x

  • Well the bowel cancer disappeared and this was a new primary at stage 3a a couple of years ago. I had a lobectomy they took half the lung.  It then spread to the mediastinum so I had radiotherapy.  Then some short time later it spread to the supraclavicular (collarbone area) so I had Cyberknife.  Then it spread again and another tiny tumour appeared very near to the last one.  So they sent me to have targeted radiotherapy yet again. Just finished this.  Late  stage now they say.  Didn't have biopsy on the latest tumour so am guessing it's stage 4 something or other.

     

    I don't think I'll get out of this in one piece this time.... it usually goes to the brain they say but can appear anywhere in the body

    still I've had a good innings..

    xx

  • Wow, you certainly have been through a lot and your strength and courage is admirable! 
    The reason I asked about your lung cancer is because in November 2020 my Grandad (72) was diagnosed with stage 4 metastic lung cancer. It was a huge shock as he had no symptoms at all and only discovered the cancer due to a biopsy he had from a lump in his neck. In January 2021 he started chemo, which seemed to be doing well, but has since stopped the chemo and is now receiving immunotherapy every 6 weeks, which is keeping everything at bay, and thankfully he's still living a normal life. We are very fortune that he still does not have any lung cancer symptoms, has maintained his weight and overall is doing great. He was told without treatment his life expectancy would be 3-6 month and upto 2 years with (that was if he had the chemo) I'm not sure what happens now he's having the immunotherapy as usually you can only receive it funded for two years. 
    The life expectancy for lung cancer is not great, however I have read several stories of the minority of patients who have reach the 5 year mark, but your story has filled me with a lot of new fresh hope. 
     

    Take care and keep on fighting x

  • Glad Grandad is doing well- and yes he may well be around in 5 years.

    can you tell me about the side effects he had when in the chemo - and later the immunotherapy?

    I'id be happy to know......

  • Thank you!

    Im praying that is the case. Mentally he's a strong man, and we are very positive, so hopefully that also helps us!

    Ofcourse, his chemo was actually worse than his immuno. The chemo made his very very tired (some days he'd slee 12 hours) it also made him loose his appetite and it caused him to have an incredibly dry and sore mouth, some days he really struggled to even drink. Other than that the only one thing he had was dizziness. His immunotherapy has been brilliant, he gets very few side effects, and usually it takes up to 6 days, where with chemo it was usually day 3 the symptoms started and lasted nearly until his next round. He does still experience some dizziness with the immuno, but not as bad as the chemo, again he gets sleepy and sometimes he gets cold and shivery then sweating the next. The side effects from the immunotherapy are a lot friendlier and he can deal with them a lot better.

     

    I hope this helps x