I've just turned 36 and was diagnosed with stage 3 bowel cancer 8 weeks ago (April 2017) after going into a&e ( I thought I had gastroenteritis and looked 5 months pregnant) My gp who I saw 3 times said it was wind!! It was 4.5cm and in 1 lymph node, no spread. Stayed in hospital for 5 days, stent fitted and 3 weeks of poo fired out my bum over night after being pumped witg laxitives (I looked 7 months pregnant at this point), tummy went down and allowed home to recover for 2 weeks.
May 12th 2017 - has surgury to remove tumor, stent and 41 lymph nodes. Consultant told hubby he was confident he'd got it all out. Final stage was T4n1mo. I node confirmed cancer poorly differentiated cells, the rest were clear with clear margins. Had a full colonoscopy b4 starting chemo just to check nothing else was going on and all was clear. I'd had more bleeding 2 weeks after surgery so was convinced there was!!
Starter Folfox mop up chemo beg of July. I'm now on my 11th round and seem to be doing ok apart from the usual side effects which are manageable. Last session 8th Dec. Didn't have last session as my hands blistered and peeled.
I'm now worrying about life after chemo and all the follow ups and the worry that goes with that. I have two beautiful children I desperately want to watch grow up! I wish this had happen when they were older....its shit for them!
Dec 2017 - Clear scan - told in remission
CEA Mid Feb 18 - 0.8
CEA May 18 1.7 - felt worried about increase
May scan clear
July 18 CEA 1.5
Oct 18 CEA 1.5
NOV SCAN - CLEAR
JAN 19 CEA 1.8
March 19 CEA - Normal range (didn't ask)
May 19 Scan - clear
Colonoscopy MAY 19 - lesion found on join CT scans re-checked and still showing clear but biopsey confirmed recurrance in bowel join poss inside & outside join. Waiting PET and MRI to confirm if this is the case then surgery and hot chemo at St Mark's London
26/6/19 - PET showed two small nodules in abdomen at bowel join. Radio and HIPEC planned for cure again.
8/7/19 - Oncolgist recommended 3 months folfiri follows by 5 weeks radio followed by hipec followed by 3 further months of folfiri so about a years worth of treatment to face.
9/7/19 - started folfiri 😔
Letter from radiology department confirming my recurrance was missed twice on CT and was the fault of the two consultant radiologist for not spotting it when their peers did in retrospect. A small single met was seen to the right of my ovary at the May 18 scan (but missed) as it grew it attached to the bowel and ovary (missed again on Nov 18 scan) it grew bigger into my bowel and caused bleeding (missed again May 19) I requested another colonoscopy where it was picked up! Thank goodness I was persistent!!
15/12/19 I've managed to complete 6 sessions of folfiri and 5 weeks of chemo/rad. I'm now on a break till March when I'm booked to have HIPEC at St Mark's which feels huge and scary. Next big milstones will be CT results from radio and Lapro results in Jan. Don't feel grown up enough to be dealing with all this some days.
8/1/2020 - Lapro day - was told no peri mets and no tumor at all. Radio worked and they could see no cancer pelvis.
Researched and added digestive enzymes during radio as well as continuing with asprin, probiotics & antihistamine.
Next stop MRI & CT end Jan 2020
Resection at St Mark's Harrow on 11th March 2020 along with full hysterectomy, muscle shave, pelvic wall shave, temp ilostomy made.
Histology good, lymphs clear - No more chemo recommended.
Decided now was the time to start care oncology clinic as no chemo was offered post op - started April 20
8/6/20 CEA 1.0 (3 months post op).
Bloods July 2020 CEA 2
July 2020 - Scan NED
Bloods Nov CEA 1.7
Nov Scan NED
All Care transfered to St Mark's
Bloods Feb 2021 CEA 3 (post covid jab)
March 2021 CT - NED
Bloods April 2021 CEA 2
Been on Care Oncology Clinic 1 year!
April 2021 Pelvic MRI NED
April 2021 CT clear
June Bloods CEA 2
Sept 2021 St Mark's MRI & CT Clear
Oct Bloods St Mark's CEA 2
Dec 2021 CEA 2
March CT - NED