Profile

charleyb

Regular user
Female 42 y.o.
ABOUT ME

My husband (39yrs old) was diagnosed 21st July 2017.
He had on and off bowel issues for about 6 months prior, but nothing that you couldn`t put down to a dodgy meal or tummy bug. Then 6 weeks before diagnosis the toilet trips stepped up, at worst 15x a day, it changed consistency and size. Went to GP as fed up with it, GP requested colonoscopy, which seemed excessive for a bit of IBS but hey lets check it all out. Colonoscopy found a mass, we both sat stunned, what sort of mass are you talking about i said, well i am thinking a cancer. And that was it our world stopped. I will never get over that day, and the pain in my heart i felt and still feel. We have been married 3 years, have two little boys, and are in the process of buying a new house. We predict a fight, and whatever happens we are ready for this fight!!

Update the exact diagnosis is Stage 4 with 1 large lung met - T3c, NO, M1,
PET CT scan confirms rectal tumour is contained and lung met is isolated. No other signs of disease anywhere.

July 31st 2017 - Temp Ileostomy

Aug 15th 2017 - Started Folfox and 5fu, no major side effects. Appoint with Onc and wants to add cetuximab in, so that will start on cycle 2!

Aug 25th 2017 Meeting with Dr Chau at The Royal Marsden, amazing man!! Would recommend a second opinion to everyone. He agrees with chemo regime, but recommends radio/chemo for only 1week, and lung surgery a week after that, then bowel surgery 4 weeks later.

Sept 6th 2017 Appoint rectal surgeon Mr Rasheed The Royal Marsden
He believes rectal tumour is actually a T4, and coming thru front wall onto peri cuff/bladder. Surgery will remove part of peri to make sure to get clear margins.

Sept 26th 2017 Cycle 4 completed, and CEA dropped from 68 to 20, fingers crossed for some good shrinkage!

Oct 11th 2017 Cycle 5 completed and CEA is now 12!!! Amazing!!

Oct 25th Cycle 6 complete and CEA now 7!!! Even better!!! wow

Oct 30th Scan results show awesome shrinkage bowel 1.4cm and lung met 2.4cm.
Tumour in bowel now a T3a and high risk factors gone.

Nov 13th One week intensive radiotherapy, no major side effects

Nov 26th Lung segmentectomy at Harley St, London, good margins achieved, rest of lungs look good.

Dec 8th/12th CT and MRI scans - Great News!!! a small section of vein shows a signal, but bowel tumour obliterated. Re-staged as T1 N0 Mx

Jan 4th 2018 Bowel resection The Royal Marsden, went to plan, no suprises. Resected bowel, fat and lymph, and the peri cuff (as original scan showed tumour touching it)

Jan 23rd Biopsy results reveal tumour was T2 N1 M1/:x: present in 3 out of 25 nodes.
Good clear margins achieved.

Feb 7th Mop up Chemo Folfox and 5FU. CEA 1

Feb 19th Clear baseline CT scan

Feb 27th Cycle 8 Folfox and CEA still 1

March 13th Cycle 9 CEA still 1

March 27th Cycle 10 CEA still 1, but platelets plummet so may have to have a delay.

April 10th Cycle 11 CEA still 1, platelets ok due to a week of eating papaya :)

April 24th Cycle 12 CEA 2 - Mop Up now complete, move to watch and wait

April 27th Turns 40 what a great end to treatment! party for both!!!!

May 14th CLEAR Scan!! and CEA 1

August 6th CLEAR Scan!! and CEA 1
(cyst noted in liver)

August 28th Ileostomy Reversal London Clinic, Harley St.

November 5th CLEAR Scan!!! and CEA 2
(cyst vanished!!)

February 4th 2019 CLEAR Scan!! CEA 2

March 12th Colonoscopy Harley St all looked good except one rectal polyp removed and sent for biopsy. Surgeon feels confident its benign

March 26th 2019 Polyp is inflammation only, so no chance of ever being cancer. Scope not clear (due to naughty husband eating banned foods) Another scope 6 months time

May 20th CT/MRI clear but cea now 3, re-running bloods to check, may need urgent pet scan

May 21st and CEA is now 5.............. :(

June 6th Met on liver confirmed by pet scan....urgent MRI and referral to liver surgeon.....the fight continues :(

June 17th Meeting with Onc, met is 1.1cm and frustratingly has been there since last year :/ grrrrrrrr. cea still 5 strangely, its stopped rising

July 1st Open liver resection Harley St, liver met 1.3cm, centre is necrotic (from chemo) so met most likely there before. Clear margins, no signs of any other disease.

July 19th Meeting with Dr Slevin at London Clinic, he believes liver met was there at diagnosis, he feels that in 2 years nothing "new" has appeared so hopefully that is all the disease there is. He suggests no more treatment and just intensive scans/screening for the next two years..................what a rollercoaster this journey is!!!!!

August 8th CT scan clear and CEA back to 1
Intensive screening every 2 months from now on.

October 8th Colonoscopy at London Clinic - clear woo hoo - next one in a years time.

Oct 16th - CLEAR ultrasound and Xray. CEA 1

Dec 10th - CLEAR CT/MRI. CEA 1.8

Feb 12th 2020 - CLEAR ultrasound/Xray. CEA 1.1

June 01st 2020 - CLEAR CT/MRI. CEA 1.5

Aug 14 2020 - CLEAR ultrasound / Xray. CEA 1.5 and meeting with new Onc Dr Sibtain

Oct 20 2020 - CLEAR CT/MRI. CEA 1.5

Dec 18 2020 - CLEAR ultrasound/:x:-ray CEA 1.5

Due to new job and new health insurance provider oncology care moved to Dr Chau at The Royal Marsden.

March 5 2021 CLEAR CT/MRI. CEA 2

July 8 CLEAR CT/MRI. CEA 2 ( 6monthly checks from now, next one Januray 2022)

Dec 2021 CLEAR CT and ultrasound. CEA 2

Jan 2022 CLEAR CT and MRI. CEA 2