Rectal Cancer Stage 3b or 4 (Still being Diagnosed) in London England

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Jogey
Posts: 4
Joined: Sun Dec 09, 2018 5:24 am

Rectal Cancer Stage 3b or 4 (Still being Diagnosed) in London England

Postby Jogey » Sun Dec 09, 2018 6:33 am

Hello All,

I am a 60 year old male who was picked up by the national bowel cancer screening fecal occult blood test program which every adult gets sent in the UK at 60.
I am experiencing absolutely no symptoms at all, don't smoke, have a healthy diet, do a lot of walking and am not overweight and so it was a real surprise and shock to find out that I had rectal cancer.
They did a CT which did include the liver, but for some reason the initial MRI did not include the liver.
There are unfortunately 2 or 3 liver nodes that have cancer in them and the tumour tumour extends <1 mm beyond muscularis propria.
In the TNM system it is T3A N1 . There is no evidence of CRM involvement or EMVI.
A further thing which is causing me concern is that the CT found 3 very small lesions in the liver. One is a Haemangioma which is a benign tumour of the liver which my consultant says never becomes cancerous so we can ignore that. The other 2 are extremely small, too small for a biopsy apparently, and too small for the CT scan to identify what they are.
I don't know why they didn't do an MRI of the liver initially but they are now going to do one and hopefully that will tell me what they are and whether they are cancer or not and complete the staging. If one or both of these small lesions is cancerous then I have a stage 4 rectal cancer, 2.9 cm in length, 12 cm from the anal verge. If they are not cancerous, then I have a stage 3B which corresponds to T3a N1 M0.
I have had the CT scan to measure me up for radiotherapy. Treatment is starting on 19/12/18 (I pushed for it to start earlier several times, but this is the UK National Health Service which is free so I don't have a huge amount of leverage and they refused saying it wouldn't make any difference to outcome, a claim I am sceptical of). From initial colonoscopy to start of radiotherapy will be 5 weeks and 3 days which feels far too long to me but I am not sure if I am right.
I have a performance status of 0 because I can do all normal daily activities with no problem.
If the lesions in the liver are not cancerous treatment will be:
five and a half weeks daily radiotherapy with daily oral Capecitabine chemotherapy.
Then rest for 8 to 10 weeks whilst radiotherapy/chemotherapy continue to have an effect after finishing.
Then surgery to remove the tumour and a margin of surrounding tissue as well as affected lymph nodes. Temporary ileostomy to allow the rectum to rest. Reversal of temporary ileostomy a few months later. They said with rectal cancer you have to do the final staging after surgery.

If the small lesions in the liver turn out to be cancer, these will be treated (I think by surgery) during the 8 to 10 week gap after the end of radiotherapy and chemotherapy.

I am obviously very concerned as I have seen the poor survival rates for Stage 4 rectal cancer (12% according to cancer.org, the American Cancer Society website). My consultant said that as I am fit and relatively young and they are very small lesions I would have a better chance than this, but I would welcome any information on how to improve my chances and would welcome any comments drawing on all your wealth of experience.

Warm best wishes,

Jonathan

SGNYC
Posts: 35
Joined: Mon Sep 03, 2018 9:20 pm

Re: Rectal Cancer Stage 3b or 4 (Still being Diagnosed) in London England

Postby SGNYC » Sun Dec 09, 2018 9:00 pm

I’m sorry you’re going through this but you’ve found a great resource.

The numbers are in many ways outdated - and you are not a number. I remember at Dx they told us that there are paths to NED/cure even at stage IV and you should absolutely pursue opinions from a major cancer center that guides people thru those paths. I remember how scary Dx was and at times remains, but there are many ways to get to a much better place.

Keep us posted and stay strong - you CAN get through this!
Wife to DH, 44
DX July 18 - RC at Rectosigmoid
Adenocarcinoma, Mod diff
T3N1M1
Stage IV (but MSK said not a true Stage IV at Dx)
Pos nodes: 1/18
1 Liver Met and 1 Lung Met - liver Met dead tissue at surgery, hence MSK M1 status
Baseline CEA value of 25, now 3.4
LAR (Robotic)/Liver resect(dead tissue), VATS lung - clear margins
Temp Ileo- Reversal Feb 19
Folfox - 5 Rounds Neoadj, 3 rounds Adj, then discontinued Oxali and 4 rounds just 5FU
NED and Reversal Feb 2019 - clear contrast CT, clear contrast MRI

Punky44
Posts: 438
Joined: Mon Oct 01, 2018 4:29 pm

Re: Rectal Cancer Stage 3b or 4 (Still being Diagnosed) in London England

Postby Punky44 » Mon Dec 10, 2018 2:27 am

You are very informed on your diagnosis and the terminology which is a wonderful thing. We battled the uncertainty of being Stage 3 or Stage 4 for a week or so and it was torturous. Two things I want to let you know:

1. Your 5 week wait from dx to treatment is not uncommon. Search my threads bc I asked this exact question and most people’s responses were between 1-2 months from what I remember. This is a very slow growing cancer so a few weeks is unlikely to make any difference. My mom was diagnosed on 10/1 and had to go through the CT, MRI, even a PET scan and a transvaginal ultrasound due to a mass that ended up being an enlarged but non-cancerous ovary, a second opinion consult at Mayo Clinic and finally got her first treatment on 11/5—5 weeks to the day.)

2. I will pray you are a Stage 3 because that’s obviously the more preferable outcome but even if you would be Stage 4, your liver lesions sound few and tiny and most likely resectable which is CURATIVE just like Stage 3. That 12% number scared me a ton too but it’s at least 5 years old and advancements are being made to fight this cancer all the time—there are so many people on this board who are Stage 3 and Stage 4 survivors that defy those statistics.

Did they take your CEA at time of diagnosis?
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Jogey
Posts: 4
Joined: Sun Dec 09, 2018 5:24 am

Re: Rectal Cancer Stage 3b or 4 (Still being Diagnosed) in London England

Postby Jogey » Wed Mar 18, 2020 4:39 pm

Hello again and my apologies for not replying sooner. When I posted this I was in shock and actually lost track of the fact that I had posted.
I was not told a CEA score after diagnosis.
Very fortunately the liver spots turned out to be benign so I was diagnosed at stage 3.
I then had chemoradiotherapy and was very fortunate to have a complete clinical response.
I have been on a watch and wait program for about 13 months and so far am clear of detectable disease.
So I have been really fortunate so far and hope that my luck will hold and wish all of you here on the forum success with your medical treatment too.


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