Rectal cancer recurrence

Hi Kjsed,

Just read your post. My late husband had recurrant bowel cancer. He got his tumour cut out in January 2022 and everything was clear and then it came back 5 months later. I asked at his post op oncology appointment should he get some kind of post op chemo incase anything got missed and they said no because everything was clear and if not necessary they don't do it but there it came back 5 months later and he had to endure more sessions of chemo which unfortunately made him very ill and was withdrawn completley because of kidney damage. Continuous bouts of sepsis occurred after that and he eventually passed in June this year after an almost 2 year battle. His recurrance was picked up at his outpatient appointment In May 2022 when his surgeon took bloods from him and he got a letter a few weeks later to say his CEA levels had risen slightly and they wanted him to go for another CT scan which confirmed it had come back. I still maintain had he got post op chemo of some sort it may have bought him more time and hopefully killed off any micro cells which had obviously got through and formed again. I'd say to anyone who is wrestling with the idea of post op chemo treatment to go for it if offered because my husband wasn't and I feel he may just still be here if he got something like that. My Best Wishes to you. 

Vicky 

Thanks for your reply and so sorry to hear about your husband. This disease is devastating for families and I am sending you strength and light along with my best wishes. I have a husband and teens at home and I hate that they are having to deal with my illness.

I am over a year past surgery for my last recurrence now but I will always wonder if adjuvant chemotherapy would have made any difference. My doctors advised that there was no evidence for any benefit in my situation. 

Thanks and take care. 

Hi kjsed I had a secondary spread to my liver and had a resection September 2022. By the time I had my first 6 monthly check up scan it had already spread further in the liver. I wasn’t offered mop up chemo, and have wondered if it would’ve prevented me being in my current situation. When I asked why it wasn’t offered, I was told they’d got all the cancer they could see, therefore, it wasn’t appropriate! I had 4 cycles of chemo, the trilogy of scans, and am now waiting to see what’s next. Sending you best wishes and better fortunes going forward.

Thanks all.

Well I had my scan today finally with an appointment for results next week. Trying to keep positive but imagining all sorts at times and of course every ache or pain is suddenly extra noticeable. Work is busy and distracting thankfully. 

Well done Carrie23 . Will keep an eye open for your update .

Wishing you very good news .

Court 

Hi again,

As probably expected, my scan showed a suspicious area in the scar tissue in the pelvis. Not a discrete mass rather quite a diffuse change in tissue in one area low down at the side. Close to the bladder I think he said presacral area. I've started to notice a slight ache in the back of my left leg which he said could be explained by the nerves in that area.

The doctor was surprised by this result as a more typical recurrence would be liver or lungs. The odds of another local regrowth were very low and he says I have been exceptionally unlucky, and that it seems I have very resistant disease.

Next is MRI and PET followed by MDT discussion. I pushed for his opinion on surgery - unlikely he thinks, but he will refer back to my previous surgeon. So we hope and keep hoping. Also asked about SABR - too large an area apparently. So chemo to attempt to control if no surgery. 

Lots to process.

Also changed my username to something readable.

So sorry to hear that Carrie23 . Still hoping the surgeon will have an option for you , although my mum is doing ok with controlling her spread with just one targeted agent . That’s nine months now and so far not too bad .

Chemo was definitely the game changer in turning my mum’s disease burden around . 
I hope which ever plan is best for you it’s significantly shrinks this back off the screen .

Keep in touch , now I have the hang of your new name !

Court 

So the latest from me....based on the CT my surgeon does feel that the pelvic recurrence is technically resectable, although would be very morbid (her words) as it is very close to the sciatic nerve. HOWEVER, PET scan has shown a 5mm lung nodule not seen on the CT. This changes the plan after a briefly hopeful time of thinking I might go straight to surgery.

This is the first distant spread I have had, 3 years after diagnosis. Appointment this week re starting chemo instead - I understand the rationale....that surgery now would give the systemic disease chance to have a party....but obviously disappointed. 

I do have insurance so talking to the Marsden as well. No idea if they will say anything different. Ablation? SABR? Any knowledge of treatment for one small lung met welcome. Thank you and best wishes to everyone. 

It’s such a blow to see surgery slip off the table and I remember it well with mum . Gutted . However , I now attribute her going straight to chemo as a big player in her longevity. 
Mum had a solitary lung met removed . It took two years of watching to get to 7/8 mm . They waited a few months and removed it . A small two inch scar under her arm and was removed by VATs procedure . Home two days later and was the easiest by far .

 Marianne26 used RFA and I am sure she won’t mind sharing her experience.

I totally understand when the treatment plan alters it really throws you off course . Allow yourself the time you need to adjust but I personally think the systemic approach has big value when you have your eye on the long plan ahead . 

A BUMP on the road for sure but taking it section by section can help ease things into a new way to head forward .

Take care ,

Court