I’m Elaine I’ve been happily married to Chris since 1978.
Chris sent off his first bowel screening test May 16 after his 60th Birthday. ThIs came back ‘all clear’. Just 3 months later in August my husband went to see the GP after experiencing dragging pains after going to the toilet on only a handful of occasions over 6 weeks. On examination GP suggested he saw a colorectal surgeon. Fortunately we had private insurance so were able to be seen the next day.
He received a diagnosis of adenocarcinoma of the rectum T3N0M0. I’m not now sure how it’s decided by scans that there is no spread to nodes as I understand now that nodes can only be checked by removal during surgery.
We were told by the consultant that he could cure this as it was contained. He offered 5 sessions of chemoradiation therapy to be followed by surgery resulting in a permanent stoma. An MDT meeting at The Christie followed after which we were told the plan had changed and it would now be 25 sessions over 5 weeks. We asked why that was and were told that sometimes they decide to do that, no more explanation than that. Scans would be taken 10 weeks after treatment ended and then surgery would follow.
This is what I have since learned from Cancer Research UK
“Stage 3A means that the cancer is still in the inner layer of the bowel wall. Or it has grown into the muscle layer. Between 1 to 3 nearby lymph nodes may contain cancer cells.
In the TNM staging, this is the same as T1, N1, M0 or T2, N1, M0”
Fast forward to end of January 2017 and the scans showed that there had been a complete response to the treatment and there was no evidence of the tumour. This was fantastic news obviously. My husband was then offered the chance to go down the 'watch & wait' route and we were assured that there would be no compromise because if the cancer recurred surgery could still go ahead.
The oncologist suggested that my husband considered going to Clatterbridge Hospital for some Papillon sessions as 'belt & braces' treatment. The Papillon would take the chance of recurrence to less than 10%. When the Professor looked at the scan he said he could see something still there so he was glad we had come to see him. Four very painful sessions followed over several weeks. A letter was sent from Clatterbridge to the consultant and the oncologist specifying that he didn't want any biopsies to be taken on the newly radiated tissue as this could result in ulceration.
On 18th July 17 my husband had an endoscopy and unfortunately a biopsy WAS taken. In the days following he suffered terrible pain which got worse over the next weeks. Incidentally the biopsy was clear. Eventually he was admitted to the Christie Private Clinic for 4 days of pain management. He was on a large amount of medication for several weeks. During this time a further internal under anaesthetic followed and the surgeon said he could only see scar tissue and a large deep ulcer. He also had painful, bloody bowel movements and this was, we were told the side effects to radiotherapy. My husband asked what could be done and the consultant said he could perform a APR which was a blow as we were under the impression at this point there was no cancer. We decided to seek a second opinion. We are with a consultant on NHS now.
Meanwhile he had further MRI & CT scans which all came back clear in October so our next appointment with our new consultant was made for March 2018.
An appointment at Clatterbridge was already in place for 9th January where my husband had a digital examination and was told immediately that the tumour had recurred. We were horrified and felt totally let down. A PET scan revealed hot spots in the groin as well as the tumour in the rectum.
I feel so guilty as I have learnt so much more about the diagnosis my husband received by joining beatingbowelcancer and cruk forums. When cancer enters your life you put your faith in the medics. Sadly I feel my husband has been badly let down and with hindsight perhaps too many ‘experts’ were involved in his care.
At our first meeting with our new oncologist I expressed how I couldn’t understand after all the clear scans how we had arrived where we are now, recurrence and spread. He was very sympathetic and understood my frustration but he explained that the scans were all they have to work with and that they are not 100% foolproof!! If that had been mentioned 12 months ago we probably would not have opted for ‘watch & wait’ and my husband would have taken the surgical route.
April 2018 - yesterday he had his 4th chemo session and a CT scan is booked for next week. I am dreading it!
17th April 2018 - Oncolgist appointment for scan results. Chemo is working, 50% shrinkage in the groin nodes and rectal tumour responding well. One more chemo session 2nd May then more scans at the end of May. Doctor suggested we take a holiday during that 3 week period, Yay! Booked a week in Sorrento.
May 2018 Back from Sorrento MRI and PET scan results 25th May 2018. Oncologist was very pleased with results. Inguinal groin nodes not visible and rectal tumour has significantly reduced in size. He decided to cut out Oxaliplatin due to neuropathy in fingers and feet so Chris just came home with the 48 hour pump. One more chemo session 8th June and then we will see the consultant to find out what next.
June 2018 meeting with consultant/surgeon. He was pleased with Chris's great response to the chemo and scheduled surgery (APR Resection) for 6th August. The first thing we did was book a week away in Lake Garda. We had a lovely time, Chris was really well, just like he'd never had cancer. He's always been slim but he gained 7lbs in readiness for his op and he looked great. Back home 1st August and Chris went into Christie's on Sunday 5th for the dreaded Picolax. We had a chat with his surgeon who said that Chris could still opt for 'watch & wait' considering the good results he had. Chris said 'I've been there, got the t shirt - let's get this out" . The doctor agreed it was the right thing to do. Surgery was very successful, only three and half hours, doctor was very pleased. Chris was in hospital 11 nights post op. Since coming home he has been a bit up and down, particularly in the first couple of weeks, emotional and anxious but that has gone now.
It's almost seven weeks since his surgery and he's doing well, we are getting out for walks, he's doing light jobs around the house and a bit of gardening. He also made it to the golf club for a bit of chipping and putting this week. Tonight we are going to a wedding reception where we will be with a large crowd of friends, he's a little nervous but wants to push himself. Long may it continue, onwards and upwards.
UPDATE February 2019
Chris’s latest CT scan came back clear - relief after another bout of ‘scanxiety’. He’s still getting used to ‘Sevvy’ Stoma, as it’s bit up & down and likes to misbehave when we go out to eat😡 We just keep hopeful that things will continue to go in the right direction. Next appointment with the consultant at Christies 11th March 2019.
UPDATE September 2019. Chris had a CT scan 6th August and we waited 5 long weeks for the results. Good news that the scan showed NED.👍
Chris started irrigating early April and after a couple of blips initially it is now going extremely well. He irrigates every 48 hours and feels confident to do anything. Golfing, walking,swimming, eating out and we have had two holidays abroad this summer and have just booked another for end of October. No more bags, he's confident enough now to just use a plug. He says that he now feels he has control over his body again.
Update November 2020-
NED scan August 2020 next Consultant appointment and scan August 2021-yikes. Unfortunately since surgery Chris has had urinary problems. We were told long before cancer diagnosis that his prostate was enlarged. His consultant referred him to the urology dept at Christies. Medication was prescribed to help with flow but eventually in October 2020 an MRI scan revealed an area of concern on the prostate but we were assured this was unconnected to the rectal cancer. A biopsy was taken (more complex without a rectum) November. Same day discharge. Complications that evening. I had to rush him back to hospital in the early hours as he was unable to pee and was in a terribly anxious state. A catheter was inserted and he came home next day keeping it in for 10 days. Biopsy due 2-3 weeks, more anxious waiting. Keeping everything crossed that whatever it is it’s benign.
ON IT GOES!!!!
15/12/20 Biopsy results revealed that Chris now has prostate cancer, low grade Gleason Score 3+4 so we were assured he only needs to go on active surveillance for now. If disease did progress, his options are limited. He has had his life’s limit of radiotherapy and surgery would be difficult given his previous operation (no rectum) So we feel like that black cloud that has hovered over us for over 4 years but had lifted just a teeny bit has well and truly descended again. Trying to enjoy life as much as we can but it’s so difficult to forget cancer for very long. Covid as we all know has been a nightmare for everyone but particularly whilst living with cancer.
UPDATE Sept 2021 (5 years post diagnosis)
Very positive meeting after latest MRI Scan. NED 😁 Due to see the consultant again in 12 months so all good from the rectal cancer point.
Unfortunately we still have to attend The Christie 3 monthly for the prostate cancer although so far scans and blood tests looking good. So we are just trying to live life as well as we possibly can. I hope our story gives hope to other forum members.