My Bowel Cancer Journey

Lovely to hear from you Marianne26 and with such fabulous news. Thankyou for sharing x

What a brilliant post, reminding us that there is a route out of the cancer nightmare to sunlit, happy uplands  delighted for you, Marianne26  !!

Hi Marianne, Hope you’re well. I had a tumour removed from my sigmoid colon in Feb 2023, it was T3 N1 M0. Twelve weeks of CAPOX chemo followed. I have regular colonoscopies, bloods and CT scans and coming up to 3 years cancer free with a final meeting with my oncologist in a couple of weeks time. Assuming I get the all clear from my latest sets of tests the NHS bids adieu. I will keep going with annual colonoscopies privately. Anyway, may I ask what your post op results were T? M?N? in 2019?

Thank you so much!

I read recently that the 5 year survival rate rose to 70% in 2021 (63 % in 1990's) which is very good to hear!

Wishing you the very best

Marianne 

Hi Dewibach

Is it just 3 years that patients are followed now? 

My Post Op. notes read TNM pt3 pNO. (Still have no idea what that really means!) However, it was Stage 2 - that was in 2019, when I had my Op. However, I was also EMVI (Extra mural veinous invasion) close to the site; but my Oncologist then, did not believe that Chemo was necessary.

Unfortunately, my yearly post scan in 2020, showed up 2 Lung nodules - so then, I had 5 cycles of chemo, with the hope of shrinking them enough to be offered Lung Ablation. I declined Capox, because I did not want the Oxyplatin drip. I decided to have Capecitabine Tabs. only, as I had read a paper online which asserted that these alone are an effective treatment. Fortunately, the nodules shrunk enough, & Ablation was carried out. The reason why I opted for oral treatment, was I was concerned about Peripheral Neuropathy in my hands, as I am an artist; & couldn't imagine a life without painting.

I have been 'followed up' for the past 6 years, with yearly bloods taken & CT Scans - which all showed that I was in remission. 

I only had one Post Op. Colonoscopy; I was recalled for another (after 3 years,) however, I declined it - simply because my scans & blood markers were fine, & I felt generally well. Yet also - they are something of an ordeal - especially so if you choose not to have sedation! (as I wanted to drive home.)

You sound like you are doing very well yourself! Wishing you all the best with your forthcoming tests!

Best

Marianne

Hi Marianne - thanks for that. The chemo oxaliplatin infusions were awful and have left me with neuropathy in the tips of my fingers 3 years later. It’s hardly noticeable most of the time, just resurfaces if I get very tired. 
I don’t have a problem with my annual colonoscopy but insist on sedation. Anyway good luck to you for the future. Adieu.

Agree that chemo drip oxaliplatin was bloody awful   I suffered lots of neuropathy in the hands during my 4 cycles but luckily feet were unaffected.

I've not long had my first 1 year CT scan, which was ok Thank God. But waiting for results was grim!  Took 5 weeks , over Xmas, to get my result. I hope other CT scans don't tale that long !

The five year survival rate of about 70 % is encouraging  i had 'mop up' chemo as one lymph node was affected when histology on my tumour was done, and was surprised when oncology consultant told me that chemo vs no chemo, raises that survival rate only by about 4%.

Aye, but 4% is 4%, you take it don’t you. I’d done 12 weeks of CAPOX and was told by my oncologist that I could keep going but it was only expected to improve my chances by 1%. The chemo Oxaliplatin infusions were so horrendous that I decided to call it a day. 

Hi Marianne,

After everything you've been through, please reconsider a repeat colonoscopy. If the procedure is the main reason for you refusing, perhaps ask your consultant for a CT colonoscopy instead.

Best wishes 

Jilly 

Hi Marianne

Great to hear you are all clear, that's wonderful!

I had a left hemicolectomy 5 months ago. It was stage II T3 N0 but only just been told about the EMVI and am very worried, I had no idea about it. It says focal next to EMVI but just trying to get my mind round it. So basically if it does spread you can have chemo and ablation? Was the chemo Capecitobine, I have had 3 cycles of that. Which part of the country are you in?