Please Help. Proctocolectomy or Tumour excision. Very Confused.

Hi Graham 

my husband was faced with two choices his was rectal cancer, dropping into anal canal.

5 radiotherapy sessions and complete APR surgery 

or 25 treatments of chemo /radiotherapy chemo tablets and radiotherapy at same time, to shrink with a 1 in 4 chance of not requiring surgery. 

He choose the 25 treatments so are awaiting results to see if he’s the 1 in 4, personally that scared me but his choice and you’d back a horse with 4-1 odds wouldn’t you .

please ask if this is an option for yourself.

very difficult decision the first option requires longer monitoring but less invasive.

Perhaps give the corelectal nurses a ring to have a chat with they are very experienced. 

Hi BradleyJ, I really appreciate the answer. Its strange why ive just been offered the surgical removal option rather than combination of treatments. In many ways I wish they hadn't given me the option but also thankful that I do have the option.

Best of luck to you and your Husband. The other thing for me being youngish makes the decision harder. If I was much older id probably take my chances with excision due to the severity of the surgery a life lived. Hard one to say for me at this point t if I want 7 years of worry instead of 5 and a life altering op with better odds.

I would certainly ask about treatments no harm in asking we are northwest.

my husbands 64 so I appreciate it’s harder younger but still hard to process 

Hi Webber.Im a bit different as my tumour was in my colon.I was given a choice but as I had a history of colitis decided it was a "no brainer" for me and went for the panproctocolectomy followed by capox "just in case"

I am now 6 yrs on with NED So very happy with my personal choice.

Obviously everyone is different but I thought I would give you just one view.

All the best with whatever you decide to do

Kath

Ps just to add I had my op by single port laparoscopy but not sure how many surgeons specialise in that.certainly faster recovery.

Just wondering if anyone else here had anything to add.  Im still very conflicted.

Your diagnosis sounds similar to my original one, however I was only really given the option of bowel resection to remove the tumour followed by chemo to mop up any stray cells.

The advantage of a tumour removal resection is it may be possible using keyhole surgery in which case you will be up and about in days and potentially fully cured (possibly with some follow up chemo to mop up any stray cells) and with no need for a stoma - you get your life back as normal.

The advantage of full colon removal is you no longer have a colon to produce any more pre-cancerous polyps, which eliminates the possibility of future cancers in the bowel itself and in turn reduces the chance of future secondaries elsewhere. However, there is a quality of life question around how much a stoma would impact you, which only you can answer.

Talk to your consultant and the stoma nurses, they are best placed to help you make the right choice for you.

I had proctocolectomy on 1st July after having ulcerative colitis for over 30 years. I had the choice of this bigger op or a smaller tumour resection. I chose the full one as no colon left for recurrence. Op and recovery went really well, luckily most of it was laparoscopic, so just 8 days in hospitlal

I got used to managing my Ileostomy quite quickly and really don’t mind my little life-saver. Still not back to full diet yet but gradually reintroducing different foods and some I just won’t risk.

As I had two positive lymph nodes I start second cycle of adjuvant Capox out of four on Thursday. The first cycle was not too bad, I realise some of the effects may be cumulative but keeping positive.

For me, I definitely, made the right decision.

Hope you find the option that works best for you.

Hi Webber1c88ad I’ve popped a link to another post below where I’ve mentioned Papillon treatment which might be worth thinking about?

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/general/300293/colorectal-cancer

Take care

Karen x

Hi, Thanks for this, ive seen this pop up on other threads. Im not really sure if that's viable for me as im South England/not private etc.

I have to be honest and also say im really mentally struggling, also not helped that I now have Covid and cant attend hospital appointments at the moment and have had my surgery date pushed back because of it. Panic attacks, inability to sleep and Dr Google have me at breaking point and then I have guilt seeing so many people in much worse situations on here.

I feel so lost with it all....

 Webber1c88ad Hi Graham. Sending you a big virtual hug and hoping the Covid starts to improve - I’ve just been reading on holiday about how nasty the latest strain is. 

I’ve been on this board for 9 years now and can say that nearly all the rectal tumours I’ve seen posts about have been treated with chemo radiotherapy before surgery. This can be very effective at shrinking the tumour making it easier to remove and some people also have a complete response meaning that there is no sign left of the tumour and they go straight to regular surveillance.

If I’ve understood your first option correctly they would remove just the tumour but wouldn’t know for certainty if there were any lymph nodes affected so would monitor you for longer but you wouldn’t have a stoma? 
The second option is an APR whereby they remove the tumour with surrounding area (clear margins) and would check for affected lymph nodes. This would mean a stoma for life? 

The second option would be the most reassuring in my eyes and I’m sure you would quickly get used to a stoma - my friend had that op and has a normal life going on holiday, eating out, drinking etc. 

Could you maybe get a second opinion or challenge their decision to not offer you chemo radiotherapy? 

Try and stay away from google - it can be scary and out of date. Ask anything you like on here and please don’t feel guilty - everyone is here to help and support and you can always ring the support line for a chat if you’re struggling?

Take care

Karen x