Hi I’m due to have APR surgery in a couple of weeks. I had chemo radiotherapy treatment in 2019 but have had a regrowth discovered in December. From what I’ve read the stoma aspect is fine it’s the removal of anus and rectum that’s uncomfortable and takes time to heal.
Hi Lizzy, do you mind me asking you afer the chemo radiotherapy treatment did you not then have an operation? I met a lady last Thursday who had chemo radiotherapy for a similar size tumour/location just inside the anus and the tumour completely went. She had a stoma, but did not have an APR operation. She was having a CT scan/other tests to make sure the tumour had not come back.
I had chemo and radiotherapy in 2019 I was just short of 3 years all clear and due to a change in bowel habits at 6 monthly review oncologist sent me for colonoscopy. At that appt said suspected a regrowth. Had all the scans and confirmed it early jan. As regrowth is so near last tumour only option is APR surgery.
Hi Lizzie sorry to hear about your reoccurrence and good luck with your upcoming surgery. My husband had Chemoradiotherapy and then Capox and had a complete response in August. However at last sigmoidoscopy found high grade dysplasia at site where tumour was and was advised to have APR. Surgeon reluctantly agreed to do TAMIS to get a better idea of histology and we have a meeting tomorrow where the consultant will share the results. I am still struggling to understand why a small suspected regrowth cannot be treated with a smaller op. No one seems to be able to articulate (only that the MDT team all agreed) this bit which would help with the decision making. If anyone can help me understand I would be extremely grateful. There’s a lot of ‘stuff’ out there to suggest other options but are not currently gold standard and it puts doubt in agreeing to the route suggested. Many thanks Lynne
I was advised as the regrowth is too near the original tumour so radiotherapy wasn’t now an option. Saying that I was told in 2019 if chemo radiotherapy not successful the next stage was surgery which is where I am at now x
I had to wait 3 months after chemo radiotherapy to have another scan before advised all clear so no need for surgery. It’s a difficult wait but they said during treatment I was reacting well so would if been surprised if I needed surgery at that point
My husband was told scan 8 weeks after treatment then operation after 12 weeks (scan took place 9 weeks later). Told twice at the start APR surgery because it is so low in the rectum/size. He had no side affects except feeling tired after the treatment course had finished. They told him he was doing really well. A call last week from the nurse said he would be put on a waiting list for an operation once the weekly MDt meeting had looked at his case again.
Just a quick update. I emailed nurse on bowel cancer community and got really good response in terms of explanation. She said that in terms of a reoccurrence MRI and CT scans may not pick up or show microscopic disease that could be present in the lymph nodes or deeper layers in the bowel wall. It’s only on examination by a pathologist after surgery that determine final staging of resection to see if further treatment in required. I hope that helps. In that case of near complete response (before surgery) ask about Star-trec which is less invasive surgery trial (I think). Best wishes Lynne
Thank you Lynne for your update. I really appreciated it. We are having a really stressful day today. My husband had his MRI scan last Thursday. I told him I thought there was supposed to be two scans before the weekly MDT meeting to decide the next step/operation (we have been told twice this is likely to be an APR operation). This afternoon he noticed a missed call/voicemail message on his mobile from this morning. Apparently, he has missed his CT scan, which was supposed to have taken place last Saturday. He never received a letter/telephone confirmation on this. They have fitted him in tonight at 7.00 p.m., but whether the results will be back in time for this week's meeting looks slim. Take care. Susan
