started the journey62
Been on here since March 2019 at first diagnosis . There is a great wealth of information and support to be had which is very encouraging. I thought it may be useful to post my journey so far. Apologies if it is a little long but someone out there may be having or has had a similar experience. Good luck to you all.
Bowel Cancer Diagnosis & Treatment
Doctors appointment following bloating and frequent toilet visits with eventual rectal bleeding symptoms for probably over 12months but regrettably didn't do anything about it as just thought it was recurrent piles. I'm sure I'm not alone in this.
Thursday 7th Feb 2019
Sigmoid Colonoscopy Wed 20th Feb suspected tumour identified
Nurse support call Thursday 21st Feb very supportive
Friday 22nd Feb Blood Test kidney Function. Urea & Electrolytes Full Colonoscopy Thursday 28th Feb CT Scan Monday 4th March MRI Scan Monday 11th March Tumour 6cm ulcerating Some Rectal vein thickening crmv + No Mets in lungs or liver Clinic Appointment with Consultant Wed 13th March Nurse pathway call 19th March Royal Marsden Clinic Appointment 28th March Defunctioning Stoma op Friday 29th March Discharged Tuesday 2nd April Stoma clinic Wed 3rd April Radiotherapy planning appointment Thursday 4th April Stoma clinic Tuesday 16th April Chemo planning appointment Wed 17th April
Enrolled on TRIGGER Trial
Chemo & Radiotherapy treatment starts Wed 24th April for 5 weeks.
Last radiotherapy treatment 30th May
Clinic 30th May
Blood Test CT Scan & Diffusion MRI Scan June 27th CEA dropped from 23 to 5 MDT Meeting & Results July 2nd Clinic Appointment July 8th 2.30pm Clinic appointment July 29th Blood test and chemo paperwork July 30th 3 months of Chemo starts Capox. Intravenous 9.30. Oxaliplatin
CEA dropped to 4
Aug 20th 2 cycle Capox 10am. CEA 3 Normal
CA-19.9 = 9 (0-37 = normal)
Sept 11th 3rd cycle Capox
CA-19.9 = 12. CEA 3
Oct 2nd 4th cycle of Capox. No RAS genes present.
Chemo tablets finished
CT & MRI scan Nov 19th
Tumour regression grade down from 3 to 2.
Tumour-Fibrotic tissue 27-28mm
Advised to defer surgery
Test in 3 months
Appointment with consultant Wed 27th Nov 2019
Sigmoid Colonoscopy booked Sat 30th Nov 8am Blood results CEA 2 MRI Scan 26th Feb 20 Sigmoid Colonoscopy booked Wed 4th March 1pm RM Clinic 9thMarch 20
CT Scan Thurs 12th March
Pre op assessment 24th March
Stoma nurse 31st March
Clinic 1st April
Operation April 3rd 2020
Resection abandoned as surgeon could not get around all of the tumour. Described as a frozen pelvis. Referred back to the Marsden for further chemo with the intention of Beyond TME surgery at RM Fulham.
2weeks post op pain subsiding 4 weeks post op plenty of walking and exercise including abdominal. No pain and wound healing nicely.
Cant say I'm looking forward to the next surgeon going in through the same scar again. The operation may be too complicated for keyhole.
Clinic RM Monday 27th April
Friday 1st May PET Scan & MRI scan
No Mets in lungs or liver
Tues 5th May. PICC line fitted
& Clinic Appointment with scan results.
Tumour grade now back to 3
Grown to 4cm in length (still better than original 6cm)
Now grown beyond Bowel wall by 12mm!
Further rectal vein invasion!
Tumour 6cm above anal verge.....hopefully I could still avoid a permanent stoma!
3 months of chemo starts Wed 6th May.
19th May CEA 7
2nd June CEA 4
16th June CEA 3
6 2week cycles. Finishes 28th July
Folfiri & Cetuximab
Everything going in the right direction I think. Will be scanned end of July. If scans show better margins for surgery could proceed to remove tumour and surrounding tissues but may need a further 3 months chemo.
Surgery complicated I believe because of blood vessels and nerves in that area.
I have been told that the aim is still to cure?? Been a long 16mths so far. Don’t know if I will end up being stoma free as yet.
Skin rash from chemo comes and goes. On cycle 4 of 6 at the moment.
Staying positive. Doctors and support nurses at the Marsden and St Helier fantastic.
It would be good to hear from anyone with similar experience. Thank you for reading.