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Mike Thomas 4964

Better late than never

Hi, first time on here, but I’ve reached a point where shared knowledge might help me.
I’m 57, I had a colonoscopy in Dec 19, followed by surgery in Jan 20, then Chemotherapy in spring, summer 20, I’ve had 6 month CT scans and annual colonoscopies. Anyway, the February CT scan showed two nodules on one lung, which have been confirmed as secondary bowel cancer. But here’s the thing, it appears I’ve got a choice to make, - keyhole surgery or SABR. I’ve got another scan booked at the end of May, as one nodule is a bit too small right now. To me both solutions seem good. But what is the experience of the community?
Secondly, is this how it happens- some clear scans, then something shows up, which is treated, then back to scans until something else pops up ? Or might I get additional chemotherapy?
Finally, have to say my treatment from initial with my GP, to now has been excellent. All way through this I’ve been really positive, but the result of the February scan was a blow. I’m not looking for silver bullets, just reasonable expectations. Cheers. Mike.

louise28

Hi @Mike Thomas 4964 Sorry you have joined the forum and about the recurrence but I'm really pleased your team have given you options.

I'm going to give you my own experience and the more anecdotal stuff I've seen on the forum. Re: your question about SABR vs surgery...this is good. It means the team are hoping to get rid of the nodules and that can mean being disease free (for good or for a while nobody knows!) I've seen people on the forum have a small recurrence or a few things in lungs and/or liver and go on to be discharged (as cured as one can be!). In theory SABR is to have the same as surgery, kill/remove the cancer, but the issue is that there is no guarantee of it working. The success rate is very high though and it is extremely straightforward. I had SABR on a couple of lymph nodes and it was so easy and not invasive. I had 5 sessions and was able to exercise, works etc. If I could have had surgery, I would have preferred this because, to be honest, that is the only guarantee of removal. My nodes are still a bit active and we dont know if that's because radio is still working or because it failed... That is, I guess, the main difference between SABR or radiosurgery and conventional surgery.

The second question...is this how it works...its so hard to know. I've seen people with recurrences do chemo...ive seen others not have chemo. Some of those have never needed chemo and others have, but then have had more surgery etc. It's so hard to know! I had SABR and no chemo at that point as my team said better to save chemo for when./if needed. However, it is not unusual to give a course of chemo before or after surgery for a recurrence. Hopefully in your case you wont need it and you wont have any further recurrences, but only your team will be able to tell you! they may also give you a choice. but these days with high tech things like SABR and extremely killed surgeons and techniques, chemo is often held off until needed.

:x::x::x:

Mike Thomas 4964

Many Thanks Louise.
My initial thought was surgery, but my wife pointed out, that SABR has no anaesthetic or incision etc. and as I deduce from your point, if the nodules have been cut out, we know they are gone.
I’ll see what the next scan brings. As for the long term, in time I’ll get my positive head back on, eventually

louise28

Yes that's it @Mike Thomas 4964 pros and cons. I guess one option is sabr and if it doesn't.work surgery could be a good back up! That was my plan....

@Titanicgirl had lung surgery. I think when she spoke to the surgeon his view was bette4 to operate...

HH79

Hi @Mike Thomas 4964 i would go for removal over radio, have surgery :x::x::x:

Lirio345

Hello @Mike Thomas 4964, a very warm welcome to the forum although I am sorry to hear about your current situation. You have already received some great advice above, but I just wanted to say that many people who suffer a recurrence find this harder than the initial diagnosis, so are definitely not alone.

To answer your question about scans, it varies from person to person. For example I had recurrence in my liver back in 2016, but following FOLFIRI and Cetuximab (which I am now on permanently), all of my scans have shown no evidence of disease (NED). Others will receive the appropriate treatment for the recurrence and then return to watch and wait with regular scans. I think a good idea would be to have a discussion with your team to find out the plans for you.

Take very good care, Kim :x::x:

Titanicgirl

Hi @Mike Thomas 4964 ! Thanks for taggingme in, @louise28 ! Welcome to the party, Mike - grab a beer and stay for the chat. So, yep, the recurrance thing is an absolute rug-from-under-the-feet moment. You will find you steady up. In the meantime, be kind to yourself. The good news is that they've been spotted and they've given you an option of SABR/surgery. Take the surgery. I was operated on on Monday, out on WEdnesday and in John Lewis by the Thursday week after. Don't tell the consultant. As my surgeon said, keep chemo etc in the back pocket for now. If they say the pest is too small just now, don't panic. It can't really go wandering off or create new ones. It realy is better to wait until they can be sure of getting them out. I originally had 5 in the left lung, but 4 vanished, so in March they took that one out, using keyhole. As @Lirio345 says, regarding future scans, it really is individual. Cancer really is a bespoke disease. But, look on the brighter side. This is in the lung and they can operate. Belter. And, of course, we are all here for you. Hope that's helpful.

louise28

Great advice @Titanicgirl how are you? Hope thr fact you have been quiet is because of all the fun things you are doing!

Mike Thomas 4964

I’m just going to have to get my head round it. Which I will. Positive to know there are other treatments too. Thanks

Quote from @Lirio345:
Hello @Mike Thomas 4964, a very warm welcome to the forum although I am sorry to hear about your current situation. You have already received some great advice above, but I just wanted to say that many people who suffer a recurrence find this harder than the initial diagnosis, so are definitely not alone.

To answer your question about scans, it varies from person to person. For example I had recurrence in my liver back in 2016, but following FOLFIRI and Cetuximab (which I am now on permanently), all of my scans have shown no evidence of disease (NED). Others will receive the appropriate treatment for the recurrence and then return to watch and wait with regular scans. I think a good idea would be to have a discussion with your team to find out the plans for you.

Take very good care, Kim

Mike Thomas 4964

I think the reason this hit me so hard was that my original diagnosis came when my head was full of other stuff so it was just a case of getting on with it, but this time it’s basically the major issue on my plate so I’ve got plenty of time to think. Thanks for your reply. I definitely agree that spotting it is the key. ]Quote from @Titanicgirl:
Hi @Mike Thomas 4964 ! Thanks for taggingme in, @louise28 ! Welcome to the party, Mike - grab a beer and stay for the chat. So, yep, the recurrance thing is an absolute rug-from-under-the-feet moment. You will find you steady up. In the meantime, be kind to yourself. The good news is that they've been spotted and they've given you an option of SABR/surgery. Take the surgery. I was operated on on Monday, out on WEdnesday and in John Lewis by the Thursday week after. Don't tell the consultant. As my surgeon said, keep chemo etc in the back pocket for now. If they say the pest is too small just now, don't panic. It can't really go wandering off or create new ones. It realy is better to wait until they can be sure of getting them out. I originally had 5 in the left lung, but 4 vanished, so in March they took that one out, using keyhole. As @Lirio345 says, regarding future scans, it really is individual. Cancer really is a bespoke disease. But, look on the brighter side. This is in the lung and they can operate. Belter. And, of course, we are all here for you. Hope that's helpful.[/quote]