Would you refuse cancer treatment?

At the beginning of September, I woke up at around 3am with severe abdominal pain. By the end of that day, I was in hospital with suspected colon cancer, and suddenly had to face two colonoscopies - the prospect of one was bad enough! It really isn't as terrifying a procedure as you imagine it to be, though, and it is a basic health check which you should most cetainly have.

Treatments and choices of treatment are improving all the time. Discuss your concerns with doctor/surgeon. Don't give up, especially not at your age.

I can see both sides of this issue.

If you have watched your DH die of colon cancer, it is understandable that you are afraid of the same thing happening to you. The prospect of a colonoscopy can be scary too.

Let's start by saying that it is quite likely that you haven't got cancer anyway.

Even if you did turn out to have cancer, it doesn't mean that your illness would follow the same progression as your husband's. You might be at a much earlier stage. Yes, you might need a colostomy but it's not the end of the world. I have had an ileostomy since my early 20s,due to ulcerative colitis, but I know a lot of people who have colostomies. (We can all get together on Facebook!) These are all people who have had cancer and have had successful operations. They are living normal lives with every chance of a normal life expectancy. They are happy that they have survived, for their own sake and for their families. They wouldn't be here now if they had refused tests and treatment.

As for the colonoscopy, it's nothing to worry about. I had several, back in the days before my operation, and there was nothing painful or frightening about them. (They weren't very dignified but that applies to a lot of medical procedures.) In fact, most of my family have had them! DD (irritable bowel), ex-SiL (ditto), current SiL (diverticulitis), DH (polyps). My DH was a bit freaked out by the idea but the medical staff couldn't have been kinder, and afterwards he said that he didn't know why he had worried. His polyps were benign but could have become cancerous if not removed. That's another good reason for getting a test done.

Please think very carefully before you refuse the test. If you don't get it done, then you are going to worry endlessly. If you have it done, hopefully it will reassure you and, at the very least, it will enable you to make an informed decision. And try not to imagine that your DH's case and yours are the same. That's always a mistake.

Think you should definitely have the colonoscopy before making any decisions. I had one a while ago. Turned out to be appendicitis. They were later whipped out by keyhole surgery. So yours could something that is similarly easy to treat. Wishing you all the very best.

Having said that, things turned out badly for me, and I'm facing the no treatment option which isn't an easy one. I've always said that if anything like this happened to me, I'd be off to Switzerland, but it isn't that easy, especially with Covid on the menu.

I’m sorry things turned out badly for you lovebooks?

Thank you all for your kind and thoughtful replies. I am giving the matter a lot of thought, not least because I’ve only been out of the house for 20 minutes since beginning of March! Hope everyone who is suffering too get better soon.

Bluebellewould I don't know if anyone else has mentioned it but may be a good idea to talk to one of the cancer care nurses eg Macmillan.
I found the one I talked to very supportive and will help you even if you haven't had a diagnosis yet.
Hope all goes well for you whatever you decide.

Thank you all for your kind and thought provoking replies.

I always said that I wouldn’t have treatment, but when it came to it, I did.
We all have different ideas and are so lucky that we have choice and can exercise that right.
I wish you all the very best.

A colonoscopy is fairly quick and not too painful. It would be a shame not to have it done. You might have something easily treatable like a polyp. You must’ve had issues to get the GP to refer you in the first place. You’re only 61, hopefully the results can give you reassuring answers.
Good luck!

This is a subject close to my heart ... or my bum :-) In 2016 I was diagnosed with stage 3 rectal cancer after my first NHS bowel screening check. I was 60. I did not want 16 hours of surgery and a stoma, so I opted for chemoradiation and the Papillon treatment done by Professor Myint at Clatterbridge Cancer Centre. It was the 3rd cancer I'd had - in 1999 I had a hysterectomy for ovarian cancer and uterine cancer following several years of excrutiating pain from endometriosis -and being told by male doctors it was "women's trouble". When I refused surgery in 2016 I got shouted at by the surgeon and the nurses, told I would die within the year, and had to make a formal complaint about their behaviour. Four years down the line, I have had more colonoscopies than I can count (gas and air is a wonderful thing), MRIs, CT scans and genetic counselling. I am cancer free, although I do have long term difficulties from the heavy duty treatment, and I am still standing :-) I am glad I made the decision I did about my treatment. In retrospect I realise it took a lot of courage to stand up to the shouty surgeon. I think you have to make the decision that is right for you, but if you are armed with the information and diagnosis, then that informs your decision. Say it is worse case scenario, you can then prepare your family for your demise, make decisions about hospices, and whether you want Elvis Presley singing you out of this world, or Vivaldi. On the other hand, if it's something treatable and non-cancerous, you can look into different treatments, make a choice and look forward to more years to be old, outrageous and gorgeous :-) Good luck with your decision - don't let anyone bully you into doing what they want - even though they love you - and I wish you many years of fabulous life XX

I would go for the examination. Once you know precisely what is wrong you can better decide what to do.

I could visulize refusing treatment if I were told I had an aggressive form of cancer. I might prefer to do something I had always wanted to do while I was still reasonably fit.

If there is no chance of a cure, which there is not with some forms of cancer, putting oneself through chemo etc. just to live three months longer doesn't seem worth it to me.

Why not have the colonoscopy and see what they say? It might be that you don't have to have really extensive treatment.

61 is a bit young to think the way you're thinking.

Good luck.

My mother had a hospital phobia and when she developed breast cancer at 70, told no one. I do feel she would have had even longer with regular mammograms and treatment even though she lived to 78. Problem was, she booked herself into my house to die seeing no one and I wouldn’t consider myself a cancer nurse! I have had two lumpectomies 2008 and 2016 plus radiotherapy and regular mammos as I want to keep abreast ? of it and enjoy life.
Seriously there is very good advice on this thread.

You are far too young to even consider not having an investigation. A colonoscopy will show up any issues which can be dealt with. Maybe you are dwelling too much on what your husband went through and you are frightened. Some medical advice and counselling to help you cope. Your children will be there for you. I went through cancer with both of my parents, they were much older than you but we coped. Please do the right thing, you have a lot to look forward to.

i went for a colonoscopy and was surprised when i was told i had bowel cancer, i asked the doctor how long would i have without the operation, he gave me six months, he was very clear with me that i would spend my time in a lot of pain and would loose the use of my bowels, the op was nothing like i expected, they cut the tumor out and i did not need chemo, i still have bad days with the toilet as i have only half my bowel left but it is worth it as my grandson was born the day after the op and have been lucky to see him smile and laugh and start to toddle around xx

Everyone should be allowed to make their own decisions and their wishes should always be respected.

A colonoscopy is no big deal and merely an investigation. It could put your mind at rest by ruling out conditions that you're worrying about. I would have that test.

Treatment for conditions can either be lifesaving and helpful - or sometimes worse than the condition itself. I would carefully weigh up the 'costs and benefits' - and likely outcome.

I certainly wouldn't have painful, debilitating treatment just to survive a few more months, still with illness!

I watched my own mother fight multiple myeloma for 17 years and although she was her oncologist star patient by pulling through all sorts of infections again and again I swore l could never take all of the chemotherapy that she did. I remember the first course that she had and the sickness that came with it l know l would never be able to suffer like she did.
She was tough and never asked questions about her illness just took numerous courses of Chemotherapy pills, surviving pneumonia at least 7 times in hospital and one of those times she developed Cdiff and recovering after a feacal transplant. She lost a vertebra from each section of her spine and was always in pain. She eventually died of sepsis last year and although in those last years we still had fun and shared some lovely times l feel the same as you. I wouldn’t take treatment and I wouldn’t want my children to see me go that way either slowly suffering over many years.

I agree. It is a personal choice and without a doubt I would also refuse treatment. I don't believe that it is not down to others to try and bully you (or me) into having treatment that they certainly do not wish to have. People should be more understanding of someone who knows their own mind.

My heart goes out to you Bluebellwould and it is understandable why you would choose not to have invasive treatments. In your case it does seem that having the test to find out for sure is a good idea. But I can understand just not wanting to do so, especially with other ongoing health issues and that should be your prerogative. Take into consideration that the physical and emotional toll of the pandemic is surely a part of your current mindset.

After watching my 5 siblings pass to cancer at relatively young ages ("dodgy gene" as someone up-thread called it), I know that I wouldn't want to put my dh or dc through that either. Your post is timely as I'm presently in a similar quandary. I'm a few years older than you but had a bilateral mastectomy 8 years ago for early stage breast cancer. Since then I've been followed up with a tumour marker blood test annually. The most recent test, which was actually delayed by 6 mo due to covid, has showed a marked increase. I find myself completely paralyzed by fear and uncertainty about how to proceed. I can't even discuss it with my dh as I've recently had several back-to-back health issues and he is quite weary. I don't think I have it in me to go through what my siblings did but more than that, I don't want to put my husband through what I watched their spouses endure. Though I don't know what the alternative would be as I don't live in Switzerland.

You have received so many thoughtful and wise replies here along with the shared personal experiences, it is a reminder of what a great community gransnet is. You will be on my mind.

A colonoscopy is not painful -I've had one and seen lots being done ( ex nurse). It is purely investigative to see what's going on in the colon and offer possible treatment. Diverticulitis is painful and troublesome and sometimes surgery is appropriate improving quality of life. Bowel cancer, if caught early, has a much more successful recovery rate nowadays. A ex colleague recently had a bowel cancer diagnosis, had a resection of bowel, a temporary colostomy and is now extremely well and back to normal. I know I don't want aggressive treatment if I ever have a terrible stroke or serious neurological condition but would be very willing to have surgery for diverticulitis if required. I know someone who has a permanent colostomy because of Crohn's disease and he said that life's been great since. He was able to go back to teaching full time.

I would have treatment. Everyone is different and they react to treatment differently. You still have a lot of living to do, the treatments are there to give everyone the chance to be survivors. My uncle had a bowel cancer operation some years ago, he was fine and went on to enjoy life independently until he was 93 years young. Grid luck

Good not grid!