Very good news regarding Cancer treatment today

Roscobbc

Moderator
To demonstrate the 'opposite' side of things of inaction, perhaps when a tumour remains perhaps undetected........my wifes younger sister was buried yesterday. She was finally diagnosed with advanced cancer of the Aesophagus plus a Fistula of the Trachea (the fistula being a tear in the windpipe - presumably created by the tumour growth)
To put things in context my sister in law did have a number of other medical conditions, including diabetes. She had complained of a cough earlier this year, which seemed to clear for a while (and return). She started to suffer with reflux issues after eating and drinking which gradually got worse. She refused to go to the doctor. She was eventually persuaded to call an ambulance - they checked her out and said she was fine - no treatment needed, they said see had a bad case of Laryngitus. Her coughing got worse following this and she called the ambulance a few days later and was taken to A & E at the local hospital, subsequently being admitted to a ward. She remained in hospital for 4 weeks and finally passed away last Sunday. Her condition was advanced and untreatable........one certainly has to ask the question "would she have been 'saved' if diagnosed 6 months ago"? - would it have prevented her death? who really knows?........the reason for sharing this is that we all must do everything we can, (if only for the sake of our families) to enable early diagnosis of any potenential ailment or condition. To sit beside someone in hospital lying there literally 'drowning' as their lungs fill with body fluids just enforces the need to look after yourself.......not be put off by your local doctor trying to save the cost of an XRay or Scan.......if you have the slightest idea something might be wrong 'insist' on a referral.......it is your 'right' - whats the worst that happen to you? get a bollocking from the medics for wasting hospital time?
 
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Mr. Cricket

Committee Member
Unfortunately a common theme Ross especially in Men refusing to visit the doc especially if it's about your willy or botty

Condolences to your wife with the loss of her sister
 

Roscobbc

Moderator
Unfortunately a common theme Ross especially in Men refusing to visit the doc especially if it's about your willy or botty

Condolences to your wife with the loss of her sister
Thanks - I was lucky some 10/12 years ago with early diagnosis of a couple of tiny tumours just begining in my prostate during a 12 month follow-up for a previous injury ...........probably wouldn't have realised a problem until perhaps secondary tumour may have appeared elsewhere in the body.
Reality is that the NHS would not be able to cope with a mass screening programme for all men, say over the age of 50 (or earlier)........hence you are almost on your own.......
 

Mr. Cricket

Committee Member
Bringing this back to the top to share the story of yet another CCCUK member that has now had first hand experience with this awful disease. This is written with Alan Bradleys (CCCUK Events Coordinator) consent and as you will see, it shows how important it is to act without delay.

Alan turned 54 recently and received his Bowel Cancer test kit in the post and thankfully he did the test and sent it off without delay. Within a very short few days he was contacted and told to book himself in for a Colonoscopy which again he did without delay resulting in an appointment just a week or so later. We were at Corvettes at the Lakes and Alan seemed a bit tetchy and when I asked what was up it was then that the story unfolded and that he was to have the camera the next day on Monday. We all sent him and Sharron off with the usual it will be ok and enjoy the prep! Well, it wasn’t, Alan was found to have Bowel Cancer and he’d had no out-of-the-ordinary symptoms that had showed before. The operation resulted in Alan having one third of his bowel removed followed by a few stressful days waiting on the results of a CT scan to see if the Cancer had spread anywhere else which thankfully it had not. He is now on a five year check up and getting back to his old self. The entire process from test to operation was very short and all by the NHS which could have been a lot worse if Alan had delayed even slightly.



So the reminder is, do the test without delay and raise your odds of it being a treatable disease!
 

Roscobbc

Moderator
Thanks for publishing that information - just goes to show that early diagnosis of a possible cancer (or other ailment) gives one the very best chance of potential life saving treatment.
 

antijam

CCCUK Member
Thanks for publishing that information - just goes to show that early diagnosis of a possible cancer (or other ailment) gives one the very best chance of potential life saving treatment.
Yes indeed. My brother, who lives in Australia, is now in the terminal stages of Pancreatic cancer - he's not expected to see Christmas. Pancreatic cancer is one of the more difficult to treat successfully but even so if detected in the early stages life expectancy is considerably better than if caught later. My brother had symptoms several months ago which he dismissed as digestive problems and by the time he was persuaded to go to the doctor very little treatment, other than palliative, was possible.
A very good friend of mine died from the same cancer a few years ago under almost identical circumstances - he delayed diagnosis until it was too late.Taking note of any unusual symptoms and getting them checked out could save, or at least prolong, your life.
 

Chevrolet

CCCUK Member
Alan turned 54 recently and received his Bowel Cancer test kit in the post and thankfully he did the test and sent it off without delay.
Best Regards to Alan and glad it was identified and treated quickly. I read the above and wondered why he was getting the (NHS) test kit at the "spring chicken" age of 54? My understanding being that NHS kits are sent to 60 year olds and above (including me). See from the below that they are now "rolling out" sending test kits to under 60 year olds. Presume thats why he got it?
https://www.nhs.uk/conditions/bowel-cancer-screening/

Alan's experience shows again that you can have "the Big C" without any symptoms/problems and even worse, advanced "Big C". I have a friend in this club (60 years old/always healthy/stong as an Ox) who I will not name. 6 months ago he went to the doctor with an upset stomach. After the tests he was told he had "Stage 4" cancer of the bowel that had spread to his liver. Given 6 months to live, or maybe a couple of years with chemo.

So worth getting yourself tested even without symptoms. That includes the PSA test for Prostate. NHS still not doing those on a routine basis I think. Had one earlier in the year when I got a "flyer" from a local charity who does them, although my NHS doctor will be happy to give me another when I spoke to him. There's also those "Icle tests" that Dr Hilary Jones promotes (detects blood in the urine). Bought/tried one of those, but found the results a bit inconclusive. Anyone tried one of those?
 
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Brads

Committee Member
I’m Alan who Mr Cricket relates too…
I have to post my story which is still a horror story to me…
I was 54 at the end of July and subsequently received a letter saying “Congratulations you are now 54 and eligible for bowel screening”
I received the screening kit but put it on one side for a couple of weeks. Eventually I did it and posted it off.
I received a letter saying blood had been found and that I needed further investigation, but not to worry as less than 1% turn out to be cancer and the usual diagnosis is polyps.
On Monday September 4th I had the Colonoscopy which gave me the unbelievable bombshell that they found a 6cm cancerous tumour!!!
I was fast tracked through to a surgeon who did a CT scan to determine if it had spread which luckily it hadn’t.
Roll on to October 6th were I had major surgery to remove the tumour and all the corresponding lymph nodes.
Two weeks later I received the results to say the lymph nodes were clear! And no need for chemotherapy.
I’m now in remission for 5 years but I couldn’t have wished for a better outcome.
If there’s ONE LESSON TO LEARN IS TO DO THE SCREENING TEST!!
I almost didn’t do it, which would have resulted in seriously different outcome in 12 months time!!
 

Mr. Cricket

Committee Member
I’m Alan who Mr Cricket relates too…
I have to post my story which is still a horror story to me…
I was 54 at the end of July and subsequently received a letter saying “Congratulations you are now 54 and eligible for bowel screening”
I received the screening kit but put it on one side for a couple of weeks. Eventually I did it and posted it off.
I received a letter saying blood had been found and that I needed further investigation, but not to worry as less than 1% turn out to be cancer and the usual diagnosis is polyps.
On Monday September 4th I had the Colonoscopy which gave me the unbelievable bombshell that they found a 6cm cancerous tumour!!!
I was fast tracked through to a surgeon who did a CT scan to determine if it had spread which luckily it hadn’t.
Roll on to October 6th were I had major surgery to remove the tumour and all the corresponding lymph nodes.
Two weeks later I received the results to say the lymph nodes were clear! And no need for chemotherapy.
I’m now in remission for 5 years but I couldn’t have wished for a better outcome.
If there’s ONE LESSON TO LEARN IS TO DO THE SCREENING TEST!!
I almost didn’t do it, which would have resulted in seriously different outcome in 12 months time!!
Thanks Alan. Didn't realise you delayed sending the test back and I did the same but thankfully just by a couple of weeks and that makes all the difference. I wonder if a test can be requested even if you fall below the age range if you have adverse family history?
 

Roscobbc

Moderator
Thanks Alan. Didn't realise you delayed sending the test back and I did the same but thankfully just by a couple of weeks and that makes all the difference. I wonder if a test can be requested even if you fall below the age range if you have adverse family history?
A conversation with your GP should sort that out for you - don't let him (or her) prevaricate - if you have 'family history' it shouldn't be an issue.
 

CaptainK

CCCUK Member
I work for the NHS Bowel Cancer Screening Programme, as one of the software developers that looks after the software that organises the appointments and sends out the kits and so forth. Its complex, I won't bore you with it.

But its so lovely to hear stories of successful outcomes and people being so glad that they did the test kit they are sent. You wouldn't believe the amount of people that just ignore the kits - the stats are quite shocking. So I try to tell people to do the kits as the newer kits now being used are so easy to use. Thank you Alan for doing the kit !

Also glad that the rollout to 54 year olds for you (Alan) was successful. Its one of the projects we have going on at the moment. Original screening age was 60 - 74 years old. Then we've been lowering the start age for screening by two years as soon as we are told by the cancer screening programme, with the aim to get it down to 50 year olds. I think in April 2024 we're hoping to push it down to 52 year olds - but don't quote me on it. It's all down to the capacity of the screening centres and when they are ready to take on more work.

After you have passed 74 years old (so 75 upwards), you'll be automatically ended from the test kit sent to your home. BUT you can self-refer yourself back in to keep getting the kit if you wish. Talk to your GP.

We've also just rolled out a new project to help those suffering from Lynch Syndrome, and that affects people at a much younger age. They'll be screened as early as 25 years old in some cases.

Thank you again Alan (and everyone else) for doing the kits!

PLEASE SPREAD THE WORD TO DO THE KITS! :)
 

plastic orange

CCCUK Member
I got a letter today saying my 5 year colonscopy has been delayed due to catching up after the pandemic, so I've received the poo test to do, and if this shows anything up I'll be fast tracked, but if not i'll still be on the waiting list. I'm not particularly concerned as I did a poo test recently due to another issue and it was clear. I'll still do it to continue the process. As I said some time ago, in Scotland the test starts at 50, and I was diagnosed 13 years ago aged 56 (second or third test) and a good end result. My consultant - Professor Bob Steele was the instigator of the screening programme, so I felt in good hands. If this thread gets anyone to do the test, it's served it's purpose.

Pete
 

mickn

CCCUK Member
I would absolutely recommend anyone and everyone do the test. I am 64 now and had the test sent when I was 60. At the time I had a strange niggly bowel problem, basically if I had a decent meal and went for a walk too soon afterwards I would end up literally running to the nearest loo, dog walking became very interesting because I used to come in from work, eat my tea and walk the dog, mind you me and the dog did get fitter! I was also seeing a bit of blood from time to time but dismissed it as something probably everyone suffers with. When I sent the test off I knew that they would call me in and sure enough I had to have a colonoscopy and they found 3 polyps, annoyingly one was 35mm and according to the surgeon was nearly a hospital record, so close! Anyway, have been back for a check and no issues, back on the screening program now. The good thing is the eating/walking issue is much improved.

Do the test, it costs nothing, doesn't hurt and could save so much heartache.
 

Andy J

CCCUK Member
I was diagnosed with Multiple Myeloma 2 years ago aged 53. I hurt my back at work and was off for a couple of months. Eventually I got an MRI as they couldnt work out why my back hurt or why it wasn't responding to treatment. Got a call less than 48hrs later and was told "we suspected you have Multiple Myeloma. " I had never even heard of it so i asked "whats that?" Bone marrow cancer was the reply! Wasnt expecting that.
Anyway, from Dec 21 to March 22 i had many rounds of high dose chemotherapy. (Only much later i found out from my consultant that they were very close to taking me off it for my own safety as my blood results were very close to being dangerous to my health but i insisted we carried on every time they asked if i was feeling ok) Then after a break to allow my body to recover i went in to Addenbrooks for a stem cell transplant in May 22. Hell that made me ill. Ive never felt so bad and what with the chemo and transplant i lost almost 3 stone.
Fast forward to Oct 22 and i returned to work. Just a few hours at first but back full time in Feb this year. I fuel planes for a living and its a heavy old job. Its a hell of a struggle some days but im doing it.
My cancer although incurable is very treatable. Im on medication now indefinitely and hopefully that will keep me in remission for a good while. One day no doubt i will relapse but until then i just keep on keeping on. Some days are very hard and knowing you have cancer in there somewhere just waiting to come to life again is difficult mentally some days. But... im not letting it stop me. I still have my Corvette, my daily is a V6 Jaguar XF and i recently bought a brand new KTM 1290. Im off to see my daughter in Dallas on monday. I wont let Cancer win. Yes its changed my life massively but it wont beat me.
 

mickn

CCCUK Member
Andy J, this sounds so similar to my brother in law. He's 67 now and about 7 or 8 years ago we were playing golf one summer's evening, he took a swing and suddenly yelled in pain, tried again and was in agony, he couldn't continue. We all assumed he had pulled a muscle or something but weeks later after various tests it was his own GP who realised he possibly had bone marrow cancer, he had actually snapped a vertebrae in his back. He's had all the treatments, 2 stem cell transplants I think and is currently very well. It was a major shock at the time as he was generally very healthy although he has previously and does suffer badly with depression. Stay positive and good luck (y)
 

Andy J

CCCUK Member
Andy J, this sounds so similar to my brother in law. He's 67 now and about 7 or 8 years ago we were playing golf one summer's evening, he took a swing and suddenly yelled in pain, tried again and was in agony, he couldn't continue. We all assumed he had pulled a muscle or something but weeks later after various tests it was his own GP who realised he possibly had bone marrow cancer, he had actually snapped a vertebrae in his back. He's had all the treatments, 2 stem cell transplants I think and is currently very well. It was a major shock at the time as he was generally very healthy although he has previously and does suffer badly with depression. Stay positive and good luck (y)
I know that pain! Thats similar to what happened with me. I was at work and got a sudden pain in my back. Im now up to 10 broken or partially collapsed vertebrae in my back. Ive lost an inch in height due to the collapse and now find it hard to stand upright. But.... as bad as that all sounds im still here and im still living a mostly normal life. Admittedly im still having monthly treatment at the Macmillan day unit for bone strengthening and i need to be very mindful of how and what i lift but I just view this as the ongoing cost of being alive. I was initially told that if i had no chemo etc i had 12-18 months so its a reasonable price to pay really.
 

mickn

CCCUK Member
Andy, something else occurred to me last night whilst driving home from work. When my brother in law was diagnosed I'm sure he was told it could have been due to his contact with petro chemicals. We have our own building business and for years we worked on site as decorators, all sorts of paints, thinners etc and obviously you work with fuels, is this a coincidence or is there a link? Interesting that you mention losing height as that's what's happened to him also.
 
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