Advice for newly diagnosed bowel cancer please
Posted , 5 users are following.
Hi. I live in Canada, I am 49, and I was told I have a tumor in my right intestine after a colonoscopy I had last Wednesday (3rd August). I appreciate this is a UK forum (I am British, not that it matters) but I am hoping that users here can give me information about what to expect and accept regarding timelines, what delays and timelines are normal, and if a week or two's delay will make any difference. I am new to this 
To cut a long story short, I will not undergo a CAT scan for another two weeks (19 August). So obviously I cannot have surgery until after that date. Should I be concerned at the delay?
I began having digestive problems (constipation) about 9 months ago, and I thought I had resolved the problem by cutting out gluten. I continued with the medical tests just in case. Oh my, what a surprise.
I can feel the tumor inside. I have for a long time, but didn't know what it was. So maybe it's big? Yesterday I began to have lancing pains. Perhaps I ate too much. I did help lift some heavy stuff. I won't do that again. The lancing pain has stopped, so I'm not too concerned, but I am being careful what I eat.
How urgent is this? I've read of other people with bowel cancer having lancing pains for months. From what I read this process can take years. Do I need to be patient and wait for the CAT scan in two weeks, or should I try to get a private scan (I'm not sure if that would speed anything up anyway).
I'm a little anxious and want to have an understanding if this timeline is normal and safe (relatively) or should I be screaming at people to hurry up because every day could make a difference? I'll probably think of something else to ask later Thanks.
0 likes, 10 replies
TorontoSteve zowie45501
Posted
zowie, your situation sounds very much like the one I went through last year. I am also 49 years old and in Canada, although I'm not British. I was quite surprised to find out I had secum cancer (right side of the colon) after a colonoscopy last November 6. I had my CT scan about 2 weeks later and surgery December 21. I had been constipated for years before that and could also feel hardness on my right side, which I just thought was caused by the constipation. My cancer was slow moving and had likely been several years in the making. The extra couple of weeks that I had to wait for my surgery likely did not make a difference. The biopsy afterward revealed that it was in Stage III (and it was likely already at that stage before my colonoscopy), meaning it had spread outside the outer wall of the colon and into the lymph glands. But my CT scan came back clean, meaning there were no visible growths elsewhere (liver and lungs are the likeliest places it would spread first).
I remember those first couple of weeks and understand that this is a very scary time you`re going through. But don`t worry about the wait. I doubt you will be able to get the scan date moved up anyway, although it is possible. Of note, I could have gotten my surgery earlier if I was willing to go with a different surgeon, but the one I had was highly recommended, so I chose to wait. The most important thing you can do while you wait is take care of your health. Being healthy will help you recover from the surgery and any other treatment you may have to go through, as well as improve your outcome.
Feel free to ask me any question now and at any time throughout the process. I have spoken to many people over the past few months who also have other cancers and it helps, but it makes a big difference talking with someone who has experienced the same cancer as you.
zowie45501 TorontoSteve
Posted
Thanks Steve. You've put my mind at rest. Can you give me any advice on how to get a "good" surgeon? From what I've read, the quality of the surgery makes all the difference. I'm in Quebec.
TorontoSteve zowie45501
Posted
In my case, the nurse at the clinic where I had my colonoscopy done recommended the surgeon. When I mentioned his name to my family doctor, she had also heard good things about him. My wife then found a positive review on one of those online doctor review websites.
Are you in, or close to Montreal? I would think that the best hospitals in Quebec would be found there. I'm in Toronto. I went to St. Michael's Hospital here. It is usually mentioned after a couple of other hospitals here for cancer care. But it is regarded as the top hospital in the city for colorectal care.
My advice would be to ask around. Doctors know other doctors, especially the ones with good reputations. And, I would choose a hospital that ranks high in colorectal care over one that ranks high in cancer care.
zowie45501 TorontoSteve
Posted
Thanks for the suggestions. I'm in Quebec City. I'll have to start digging. I'm not sure where to start looking in French, but I'll probably start with my doctor, and then start finding surgeon names and googling them. I find it hard to find things out here. Thanks again for all your help and going to the trouble of responding. It's helped me.
lindsyw123 TorontoSteve
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TorontoSteve lindsyw123
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Hi lindsyw123. I did not work while I was in treatment. I was off for 8 months, but everything went smoothly for rme. I returned to work 3 weeks ago and the return to work has gone well. It took me about a month to recover from the surgery sufficiently to be able to work, but then I started chemo. The chemo lasted 24 weeks and then I took the rest of the summer off to recover. It took about three weeks to get over most of the issues relatted to my gut and about two months to get my energy level back near normal I suffered no complications and did not experience anything that I was not supposed to. The chemo was quite unpleasant. I know some people work through it, but I am glad I didn't have to. I'm not sure, but I think they reduce the dosage if you are working.
lindsyw123 TorontoSteve
Posted
Hello Steve soooo glad everything has worked out for you 😊 I am working from home most days so its ok really...my treatment is the same as yours 24 weeks. Can I ask does it get worse the longer it goes on as in symptoms as this being my first it seems to have been very smooth! Thank you in advance of any response😊
TheToad zowie45501
Posted
Hello Zowie. If it is urgent, i.e. a blockage etc, I'm sure you will be treated immediately. In my case, there was a complete blockage and I was having surgery about two hours after a CT scan showed the problem. I don't think it matters where you live to get advice on this site - I'm in New Zealand and have had many informative replies to my various posts. Best wishes and keep posting!
shazsilverwolf zowie45501
Posted
Hi there, starting off, a wait of up to 6 weeks is normal over here for a CT or MRI scan, so two weeeks is no time at all. So I'd say that over there, things are going faster than they would over here. The CT will help them plan the next move. In my case it was radiochemotherapy to try to shrink what was a very large tumour. It will also give them info on exactly where, and how it's located. all in all, from my first reason to visit Gp ( End of June 2014, to my surgery Sept 2nd, 2015) it was 15 months in total, and my tumour was totally removed, granted it got complicated as mine had attached itself to my tailbone, but what I'm saying is a few days or even weeks is no big deal in the scheme of things. Personally, I never had any pain at all, nor any other 'typical' cancer signs, other than the loss of blood which sent me to my GP. Do bear in mind that any answers you get from Brits will have little or no bearing on how things happen in Canada.
zowie45501
Posted