Stage 3 rectal cancer and on a rollercoaster

Hi Wenglish and a warm welcome to the board. The waiting for all the various tests and scans is very stressful but things will hopefully feel a bit better once you know exactly what you’re dealing with. 
I was diagnosed in 2016 with a 4cm tumour which was about 9cm from my rectum. I had 5 weeks chemoradiotherapy which shrank the tumour by 75% before surgery. I had the tumour removed and then chemo as 2 out of 17 lymph nodes had tested positive. My ileostomy was reversed in March 2018. Chemo radiotherapy has been known to zap the tumour into nothing - known as a complete response - but that is a bonus and not guaranteed. 
Have you been told that you’ll definitely have an ileostomy and a colostomy? There can be a lot to take in at some of these meeting so it might be worth writing down some of your concerns to discuss once the pet scan results are back?

Hope you get your pet scan appointment soon

Take care

 Karen x

Hi Karen. Thank you for taking the time to respond it’s appreciated and to hear of your journey that does sound similar. I’ll have to check whether the two bags as it was a lot to take in and he could have said either/or. I’ve hopefully got a meeting with oncologist soon as it was the bowel surgeon I spoke with this week I’ll clarify then x

I was told either ileostomy or colostomy. The ileostomy would have been temporary and if I had a colostomy it would be permanent. I ended up with the permanent colostomy. 

I also ended up with a urostomy because the tumor invaded the bladder. But your tumor is much smaller than mine so I doubt you'll need to worry about that. 

My tumor was initially inoperable. I was given radiation and chemo which shrunk it enough for surgery. So surgery may still be possible down the road even if it isn't a possibility right now. 

It's a terrifying diagnosis and I doubt anyone can take in all the information at once. I certainly didn't.  Hopefully you will get your PET scan soon and have a more definite plan. But the ileostomy vs colostomy question may come down to what the surgeon sees when he is doing the surgery.  

Thankyou Susan13 for your message. That makes more sense regarding the ileostomy and colostomy i think it just all rolled into one during the meeting in the end. So many ifs and buts and waiting is awful. I appreciate you taking your time to share with me your experience x

Hi Wenglish

First of all, I’m sorry to hear of your diagnosis. I had Stage 3 tumour about 12cms up my rectum and 5cm in size. I was told by my MDT to have intense radiotherapy and 6 courses of CapOx over 4 months and then see where I was for surgery. It turned out that treatment had completely blitzed my tumour and I had no need for any surgery (I’m still shocked to this day, think my oncologist was too). So I think I was extremely lucky

But all case are unique inmho as plans can differ with strengths of doses and how many courses etc so this is where the great work of your care team will guide you for your treatment and look after you 

All the best for your treatment and the community is here for you!

Stay positive as that really does help!

Hi CoopsBHX thank you for your message and so pleased to hear your news that you blasted it. Brilliant! I am remaining very positive I’m not saying I don’t have my days but I give my head a wobble and I’m good to go again but your message has definitely given me a boost for sure. Thank you so much 

Hi Wenglish  … this sounds like my situation in Tumour size & lymph node involvement …and CoopsBHX  I’m so happy your treatment has worked so well … that’s wonderful to read.

I was told yesterday I’m soon to start Chemoradiotherapy treatment (inc Capecitabine for 5 weeks) then see what’s what. My tumour is 3.5 x 2.2cm in a similar position.

It’s been a very long slog getting a biopsy done - and that only happened after someone told me to ask for a PET scan. I had no idea of the different qualities of scans but looking back at all the medical notes I’ve kept, in my very first MRI way back in 2020 the Radiographer recommended a PET, when I first found what was then a tiny pea-sized lump.

Since then I’ve been passed between Gynaecology and Colorectal a few times, involving numerous CTs, MRIs and Ultrasounds. It’s been a hugely stressful 4.5 years to get to this point and bizarre as it might sound, I really only started sleeping properly again a few weeks ago when I was told yes, it IS Colerectal cancer. It’s an implant from a cancerous CR polyp that was removed in 2014. That’s what I’d been frightened of all along because that first MRI mentioned that possibility too - but I was assured again in 2021, 2023 and 2024 that it was a calcified vein, a Phlebolith - and therefore inappropriate to biopsy.

We’re always told we know our bodies, and to keep going back to the GP etc when worried - but we can at times be made to feel like crazy worriers … this might sound weird but I’m feeling relieved to know the truth at last (!), but TBH also nervous about the Chemoradiotherapy’s possible side effects.

Wishing everyone well   

Sorry to hear you’ve been going around in circles in so much time too! Chemo affects everyone differently but if you have a similar experience as myself you’ll smash it!!! Stay strong you’ve got this!! Sending lots of love and hugs

 SadieW Oh bless you what a journey you have been on! I totally get the sleeping better although sounds strange but I think it’s actually having answers and something to focus on instead of the what ifs and buts although it’s still a journey of not knowing to a certain extent. I’m meeting with the oncologist tomorrow so fingers crossed I’ll have more clarification of a treatment plan. Then onwards and upwards to get rid of what we have named Mr Peahead as when they were taking a biopsy there was a solitary pea left over from bowel prep sat on the tumour. Good luck with your treatment x

Ah thank you Wenglish. Hope you have a good meeting tomorrow x