My journey with rectal cancer: What's your experience?

Posted by martin77 @martin77, Oct 28, 2022

Hello everyone. I live in the UK and was diagnosed with rectal cancer 2 weeks ago. Since then I've been fast tracked through our NHS system with an MRI scan, CT scan, and another MRI scan this coming Monday to check out a spot on my liver, followed by a meeting with a consultant.
I've been told the tumour is 6" inside from my anus. Can anyone inform me if this would be rated low, mid, or high up in the rectum? Thanks.
This is a great forum for exchanging information. Hats off to the Mayo Clinic!

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

@tomm123

im going for my fifth chemo they do make you feel bad mentally and physically

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Yes, it's not much fun. Do you have a similar pattern for each treatment of a tough start, an easier middle and an almost normal final stage before starting the next round? I found that helped both my physical and mental state. Best of luck with your future treatment - once it's all over I hope you'll feel great!

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@briancl

Congratulations. I have done my 8 chemo treatments for which I had a port inserted in my chest. I was wiped out for a few days after each session which I had every 2 weeks. Certainly not for sissys, but managable. I am now on my 7th radiation session which I have every day along with chemo tablets. At least no more needles being stuck in my chest. Making good progress, I think, as my blood test cancer indicator is down from 6 to 2 and the tumor has shrunk by 2.5cm. I am so looking forward to getting back onto my mountain bike! Staying positive and looking forward to living a normal life again in the not too distant future.

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im going for my fifth chemo they do make you feel bad mentally and physically

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@briancl

Congratulations. I have done my 8 chemo treatments for which I had a port inserted in my chest. I was wiped out for a few days after each session which I had every 2 weeks. Certainly not for sissys, but managable. I am now on my 7th radiation session which I have every day along with chemo tablets. At least no more needles being stuck in my chest. Making good progress, I think, as my blood test cancer indicator is down from 6 to 2 and the tumor has shrunk by 2.5cm. I am so looking forward to getting back onto my mountain bike! Staying positive and looking forward to living a normal life again in the not too distant future.

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Well done, Brian. Keep going and you'll soon be back on your mountain bike. I've just done 6.5 hilly miles on an e-bike loaned to me, the first ride since my op, and the thrill of getting going again is brilliant.

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@martin77

Day 126 since operation on 4 November and 84 days since the start of chemo on 16 December and it's all over- yippee! The last infusion went well, I'm feeling good and looking forward to rebuilding fitness for long bike rides / walks / gardening. Although tough at times I feel sure the chemo was worth the effort. The next stage is a follow up CT scan in a month's time and another colonoscopy in due course.
So this ends my journey for now but I will continue to contribute to this forum, which I have found so supportive during a worrying time. All the best to everyone on your respective journeys.

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Congratulations. I have done my 8 chemo treatments for which I had a port inserted in my chest. I was wiped out for a few days after each session which I had every 2 weeks. Certainly not for sissys, but managable. I am now on my 7th radiation session which I have every day along with chemo tablets. At least no more needles being stuck in my chest. Making good progress, I think, as my blood test cancer indicator is down from 6 to 2 and the tumor has shrunk by 2.5cm. I am so looking forward to getting back onto my mountain bike! Staying positive and looking forward to living a normal life again in the not too distant future.

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Day 126 since operation on 4 November and 84 days since the start of chemo on 16 December and it's all over- yippee! The last infusion went well, I'm feeling good and looking forward to rebuilding fitness for long bike rides / walks / gardening. Although tough at times I feel sure the chemo was worth the effort. The next stage is a follow up CT scan in a month's time and another colonoscopy in due course.
So this ends my journey for now but I will continue to contribute to this forum, which I have found so supportive during a worrying time. All the best to everyone on your respective journeys.

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Day 100 since operation on 4 November. After a nice dose of sea air, the third infusion on 26 January was a huge improvement on the difficult second - a good vein was used plus a pre-infusion injection of Piriton and a steroid and this seemed to make all the difference. Slight nausea towards the end but nothing significant. Since then, a similar pattern emerged - a tough first week whilst the Oxaliplatin gets flushed out at the same time as Xeloda pills are consumed (6 per day) , which caused constipation again, a much easier second week and now a reasonably pleasant third week before my final cycle starts on 16 February, so nearly there! Some constipation remains but Movacol is gentle and works well. After a couple of days of feeling tired and not wanting to do anything (too much Rugby on television perhaps) yesterday I achieved 6,800 steps, worked on my vegetable garden and today feel a lot better! So managing the diet and keeping the oxygen flowing seems to be the key to not letting chemo take charge.

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Day 78 since operation on November 4. After the unpleasant experience on January 5 when the second chemo cycle started with an infusion of Oxaliplatin, it took a week to recover enough strength to get out and about. The low point was January 10 when I had no appetite and could only manage 36 steps the whole day! Things improved steadily in the second week, 3,930 steps being recorded on Jan 16, but the left arm remained painful around the cannula site. I'm now 'on holiday' for a week with no Xeloda until the third cycle starts on January 26 and feeling much better - 5,600 steps yesterday and looking forward to three days away on the coast starting tomorrow for bracing walks in the sea air, swimming (hotel pool not the sea!) and maybe exercise biking. I've been losing a bit of weight but this is probably due to less leg muscle, having been a fit cyclist until my operation. A dietician has recommended an increased calorie intake.
My oncologist has advised some adjustments to the next Oxaliplatin infusion - longer duration, a dose of Piriton beforehand and a better looking vein - which will hopefully avoid the difficulties encountered last time.
The good news is that I'm nearly half way through my 4x3 week cycles and still alive! I'm confident the effort will all be worthwhile.
I would be interested to hear from others with experience of this combination of Oxaliplatin and Xeloda. Many thanks and good wishes to all those currently undergoing treatment.

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@marymary69

Hola Que tuvo usted cáncer de ano Porq me han diagnosticado eso a mi y no se que procedimientos será mejor lo mío estaba en un pólipo y lo sacaron pero la biopsia salió cáncer .espero su respuesta

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Hello. I had a 4.5cm tumour high up in the rectum and it was removed by surgery on 4 November. I then started a chemo course on 15 December - 4 x 3 week cycles. Please read from the start of my journey for more details. Best wishes.

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@apinzonc0627

Hola todo dependerá del resultado, y si el tumor se encuentra ubicado en un solo lugar seria lo excelente, porque así sería fácil de remover, sin mayores consecuencias que fue lo que me paso a mí y gracias a Dios todo salió bien.

Suerte que todo salga bien

Antonio

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Hola Que tuvo usted cáncer de ano Porq me han diagnosticado eso a mi y no se que procedimientos será mejor lo mío estaba en un pólipo y lo sacaron pero la biopsia salió cáncer .espero su respuesta

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Day 63. Jan 7 2023. This chemo treatment is proving to be a roller coaster ride for me - scary, spills and thrills, in that order. The first cycle ended with the thrill of being off pills for a week and enjoying a wonderful 3 days away on the coast, clocking up over 11,000 steps on one day, together with swimming and exercise biking, and feeling 100%. The second cycle started on Thursday 5 Jan and that's when the scary and spills bit set in. Scary because the infusion of Oxaliplatin caused an allergic reaction this time resulting in much pain / discomfort around the canula site and eventual need for intravenous Piriton to solve numbness around my mouth and throat making it difficult to speak and swallow. The vein system around the canula site seemed to go on strike. Discharged from hospital eventually at 19.30 after having had a very pleasant start to the day at 10.00 with reflexology treatment for an hour. Little did I know how I would be feeling 2 hours later! Now feeling much better - 1,700 steps so far today which is an improvement on yesterday's 165 when I felt rough all day. But now it's a diarrhoea / spills day to manage and hopefully not a return to the constipation experienced 3 days after the first cycle. Can't wait for this 2 week period to finish and for another week of thrills before the third cycle commences. The good news is that I've been told that the combination of an Oxaliplatin infusion at the start of each cycle followed by 14 days of Capecitabine (Xeloda) is the gold standard treatment for my condition, so the effort must be well worthwhile.

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