Post APR op treatment

Hi Sean,

Welcome, and Merry Christmas to you! Good to hear that you are making a good recovery. My treatment was chemoradiotherapy for 5 weeks, and then surgery. After surgery the consultants gave me the option of mop-up chemo, and rather than live with the regret of not taking the chance with it, I took it. My chemo was previously tablet form, and the mop-up was also tablet form but whilst it was the same tablets, there was a different pattern to it. My course was only a few weeks, and I was ok with it. That was in 2012/13, and I'm doing fine still! When taking the second lot of chemo, it was different.... probably because I'd had all the major treatment, and I also knew what to expect. I returned to work (office work), and was on chemo at that point. Hope this is of help.

Linda :-)

Hi superfly, I've just read your profile, you certainly have been through it! My surgery wasn't as drastic as yours (see my profile) but I did have 7 treatments of Folfox 5FU as mop up after surgery as cancer cells were fund in 7 out of 24 lymph nodes, it was every two weeks (though one was after 3 weeks and another after 5). I was aiming to have 12 but had to stop at 7 due to low neutrophils. It's too early to say as to whether it's been successful (scans due next month), but I have to say I coped pretty well. I did have two or three days of nausea at the beginning of each treatment & peripheral neuropathy in my feet, hands and face, which I still have 5 months after my last treatment (though not in my face.) Fatigue was a problem too, but thankfully no diarrhoea (which I was dreading with a stoma). Take each day as it comes and be kind to yourself. Good luck! x

superfly

I had a low anterior resection, so not the same, in March. As the final staging said there was vascular invasion, I had to have adjuvant or mop up chemo. This was 5FU for 30 weeks, May to Dec inclusive, see my profile. Currently awaiting results of a CT scan to see where we are at. Not all regimes are this long, it is a relatively low dose for a long time, so you can cope with it. It is however cumulative so you feel worse over time.

Any questions I can help with please ask, good luck with your treatment!

Thanks Linda and Happy Xmas to you too 

Yes, thats what I am hoping- its just an option to have mop-up chemo in tablet form for a few weeks. I had chemo in tablet form previously. but it didn't work, so I assume they will try a different type. Great to hear you are doing so well all these years on from your treatment and thanks so much for getting back to me

cheers

Sean 

Thanks so much for replying. Yes, am taking it super easy and fatigue is a problem but hopefully only temporary.  I was lucky in that I didn't have any side effects from the chemo last time like you had.  I do wish you all the best with your scans next month. 

take care

Sean 

Thanks Gemmary 

Gosh that is long. I need to stop making assumptions about what my treatment will be until I find out my final staging. My initial staging was T3N0M0 so very similar to yours. 

I do wish you all the best with the results of your CT scan

thanks

Sean 

Morning superfly. I was spared all forms of pre/post treatment re my Elape Oct 2018. My 12 monthly follow up CT scan and Colonoscopy have also come back clear. 

It’s a huge op as you’ve discovered and fatigue is part of the recovery process which is good as it stops you from trying to do too much too soon. 

Take care for now. 

Hi everyone

I had my review meeting with my surgeon last Thursday where he took me through the post operation pathology report.  Whilst the tumour was successfully removed along with the other parts of the large intestine such as the anus, rectum and a large part of the sigmoid colon, sadly, some of the tumour has remained in the Sacrum- a major bone in the pelvis. This was confirmed by a biopsy performed during the course of the operation.

I am being referred to a specialist who will design a chemo/radiation programme for me that will target the tumour in the Sacrum, and hopefully eradicate it once and for all. This will take place over the next few months and will be followed by a scan to measure the results. If successful, I can celebrate. If unsuccessful it is likely I will need to have an op on my Sacrum to remove the tumour – or possibly the whole Sacrum (don’t go there!) . I have my first consultation this Friday so we will hopefully get the treatment underway asap.

The good news is that the cancer hasn’t spread to the lymph nodes or other organs and so whilst it is aggressive, it continues to be confined to a localised area. I continue to be encouraged that it hasn’t spread because whilst it is still in the pelvic area, we still have a chance of dealing with it. My staging remains as T3n0m0.

I must admit to not being surprised that we hadn’t seen the last of the tumour.   I had been told after the op that a lot more tissue was removed during the op than first envisaged, so this made me feel nervous that some of the tumour may still be there, and sadly this turned out to be the case.

On a more positive note I am now able to sit down for short periods and also go for longer walks than before so I will be able to do more things than I have been able to do these past 5 weeks, though more strenuous exercise is still ruled out. The plastic surgery aspect seems to have worked well.

The saga continues! 

cheers

Sean 

Hi Sean sorry to hear this but good no spread 

all the best with your further treatment cheers Andy 

Sean, that is a very comprehensive report and my sympathies are with you during what must be a very worrying period for you. I’m sure your fighting spirit will endure through this and I hope further treatment can sort the sacrum out. The fact that you have no lymph node involvement is a good thing and offers some sense of hope be it in a small measure under the circumstances. Fight on Sean. Keep in touch. X