No chemo

Hi . Just lost my long reply so I’ll try a shorter one!

Glad to hear that your boyfriend is recovering well from his reversal - he’s certainly had a rough time of it.

Chemo is tough on your body and leaves it very vulnerable to infection so your oncologist is probably concerned that he could get a serious knock back just as he’s getting back on his feet.

It sounds like they are looking at a plan that would monitor him more closely then normal perhaps? I know some oncologists don’t like to rely on CEA markers but maybe you could ask for 3 monthly blood tests? I know their scenario is slightly different but and AnnieMC50 are both on close regular monitoring after their radiotherapy success so perhaps they could give you an idea of what to expect?

You might also like to ask how close to the tumour the 2 affected nodes were? As I understand it the disease travels up the nodes in chains - mine were both close to the tumour which my nurse said was good as they have now been removed.

Please try and remind yourself that the tumour and affected nodes are now in the bin and your boyfriend is cancer free. The fear of reoccurrence is with us all but does start to diminish over time and hopefully you will get a plan in place that will monitor him closely and provide you both with some reassurance

Take care

Karen x

Thank you for getting back to me Karen. Hope you are well. 

The lymph nodes were close to the tumour. 

As far as we know he will be having ct scans, colonoscopies and bloods taken regularly for next five years but a thorough plan will be put in place when we see them. 

X

Hi ,

Completely different situation as my mum is a stage 4 patient but never has post op chemo on the bases that it was better saved for the treatment of visible disease . I think you will find the scanning very robust . Initially she was scanned every three months then six months and even managed up to a year once . She is also backed up with regular CEA checks which are carried out by her GP practice who share the same clinical portal with the oncologist. If her CEA breaches the limits her GP can contact her oncologist team directly and they give it one more test to see if it’s settles then proceed to scanning early if not .

She has had two recurrences detected that way but picked up when they were still small and quickly resolved with surgery . It’s been an amazing service . Nice have guidelines too .

take care ,

Court 

This is very similar to my situation. I started chemo, had a bad response to it and had it stopped almost immediately. I am currently sat here, potentially needing chemo, but unable to have it. However, the chemo was indeed just belt and braces, and there is a good chance I am cancer free right now. I have many tests and scans to do over the next couple of years as the condition is monitored. But yes... very similar situation.

How do I feel? It took a while to sink in, but I am much relieved, and slowly putting my life back together. While it can be hard to look on the positive side where cancer is concerned, you must remember, that the oncologists would not be taking this approach unless it were necessary... but also, they will be doing this approach because it is possible at all. And that is a VERY good thing. As Karen said above, this means that he could now be cancer free, and heading into recovery. Which is a wonderful thing! Keep that firmly in mind, and hopefully it will help a lot!

I truly hope he recovers swiftly, and can return to life renewed and relieved!

Robin.

Hi Robin.

thank you for your reply.  You are right, we have to trust the experts and I know they will continue to take great care of him with a good screening program in place. He is cancer free which is great, just want it to keep that way.  It’s very hard for him as was such a massive shock to be diagnosed last year with cancer, he is the last person you would have thought would be affected as he has always been active and kept himself fit. Now it plays on his mind the dread of it coming back and you hear so many success stories on here but most of them have had chemo.  Can I ask you what stage your cancer was? 

X

I can very well appreciate the shock! I felt a little of that myself - and still do, when I pause and try to take stock of the last few months. I also understand his fear of it returning. I truly hope he remains free of it!

My final official diagnosis came a fair way down the line for me. My tumour was so large the doctors couldn't perform a full colonoscopy, as the scope couldn't fit through the space - and explains why I was having so many awful cramps! Eventually, from the biopsy, I was finally diagnoses as T3 N0 M0 (stage 3 bowl cancer, no lymph nodes or metasteses), but the cancer had spread to my bloodstream, despite missing the lymph nodes, so chemotherapy was recommended. It made me VERY ill, I came pretty close to dying, from what the oncologists have told me, so no more chemo for me. But it they are also pretty sure I am cancer free at this stage.

I still have issues, of course. The damage from the chemotherapy is still healing, and will be for a while yet. And, of course, having a chunk of bowel removed requires a lot of healing and adjustment, and I still have sudden bowel problems. But it is all relative. I am better now than I was this time last year, by a HUGE degree. Indeed, I can see with hindsight how I had the cancer symptoms for a good three years or more, but didn't realise at the time. So. Now is better!

I'm undergoing a huge raft of tests on friday, and the usual ongoing scans and so forth for the follow up management of my condition. I am being positive. I have beaten this awful condition, and I am NOT going to let it come back!

Robin.

Wow, you’ve been through a lot too haven’t you. It’s such an awful awful disease. Thank you for sharing it all, it really helps.  

A positive mind helps a lot, it’s hard when things have been so tough, but we have to pick ourselves back up and not let it defeat us. 

All the very best to you and do keep us posted on your progress. 

X

hi len123, glad to hear your boyfriend is recovering, regarding the checks, after the complete response, i have had MRI and ct scans, and biopsies taken, and as far as i am aware that continues,  god willing every three months for the first two years, annie will probably come along and let you know more as she is a bit more on the ball than me, all the best  john.

Hi Robin

Like yourself, I had also been '''going downhill' for over a year. Eventually went to the doctor's in July 18. Colon cancer diagnosed in September after tests. Operation in October and started chemo December for eight cycles. I've just had my sixth cycle and will finish in June. I expect follow up tests. 

Everything I do, everything I take, every test I have and everyone involved, are all on my side to help me win.

We will win Robin. It's a journey that is making us an even better person.

Best wishes

Nev

Right you are, Nev! It's given me a lot of time to think about some important things, and take a lot more notice of what I do with my life. A real wakeup call!

R.