Hello lucullan, 

It's difficult sometimes to know what to do when going through the different options available. If you are not sure that having a permanent stoma is the right thing to do for your husband, it's probably a good idea to express your reservations with your husband's consultant and to talk through your various options with his medical team. 

Well done to your husband for completing 27 fractions of chemoradiation! As you said, you were so focused on getting through this that it was completely understandable that you didn't project yourself at the time on what was lying ahead. But talking things through at great length with the consultant will hopefully help and they will be able to tell you in detail what your options might be and answer any questions you might have.

It's normal to feel a bit overwhelmed by all the information at hand and if you would like to talk to our cancer nurses about all this, you can ring them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

I hope that you will hear from other members of our forum who have been through similar treatment steps and that they will be along shortly to share their story with you. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hello Lucallan,

                         its a long hard journey on a difficult road with an uncertain destination,so its no wonder that fear coupled to desperation can invade your sense's like an unwelcome invader.Having read some of your previous posts l can understand what you are going through.You ask does it  ever end?, my answer would be that the possibilities exist for it to be so if my case is anything to go by.

 l was initially diagnosed with a high grade stage 3 tumour with no spread out but close proximity to enlarged  lymph node..30 rounds of pre op chemo/radio therapy led to pre op scans picking up growths on the liver. Bowel surgery was pushed back with liver surgery taking precedence,60% removed followed by 12 weeks to recover before bowel surgery with stoma fitted.Then eighteen weeks of capox which did for the nerves in my feet,real joy as it took 2 years for my brain to stop constantly reminding me and get a grip of what my feet were doing

The stoma site was not good ,probably due to the fact l was still bloated from the liver op,so it was an educated guess as to where it would end up as the swelling subsided.The upshot was the site never healed and the wound remained raw and bloody during all the time l owned it.Fourteen months later l convinced my consultant, against his preference it has to be said, to reverse the stoma.

The stoma site finally healed over a five month period,oh pure bliss,and then l had the following five years to reflect upon why the consultant would have not preferred to have carried out the resection.The only way l can describe it is like having a newborn bowel that goes through all the stages to gain control,only more so by a thousand times.But at no time did l ever regret my decision.After five years my bowel finally decided to rejoin civil society and work in a spirit of harmony with the rest of my body.Though still slightly rebellious at times it is very controllable when l have to put my foot down,and we now co-exist.enjoying a full and enjoyable life together.l am now heading towards nine years from the start of this adventure

So yes the possibilities exist for a very happy conclusion if not a quick resolution.If this looks grim its not meant to since l carried on with life and built a new house over the following two years post treatment,along with hardly missing a day from looking after my flock of sheep and herd of cattle,only when l was laid in a hospital bed.Yes exhaustion and bloody minded stubborness become close companions,but are replaced with exhileration and a zest for a continuing contented life over time.

Keep the faith and although the flame will flicker,know the potential for it to burn brightly still exists if you can find the place in your lives to allow it to burst forth once again.

                                                               best wishes,

                                                                                   David

Hello Lucullan,

                        mine was right up against the rectum and as such a large chunk had to removed to allow for safe margins,It was reconnected and my surgeon created a new pouch from the healthy gut before rejoining to the remaining small  piece of the Rectum above the Anus

My neighbour had cancer a year in front of me,l attribute my life to him by raising my awareness so l was able to catch it in the nick of time.Anyway,he lost his entire rectum but not his anus and has been reattached now for 7 years.Like us all,he went through the explosive period but has regained a controlled function.As a professor he travelled the world,and did not stop doing so once recovered

Every tumour is different,and it may well be that every surgical schedule limits are different with every health board and country,which may have a bearing on what is offered..l live in the Outer Hebrides, remote you may think,but the world comes to me.The second professor in our small township has a holiday home and is a consultant oncologist at a leading pace setting teaching hospital in London.At the time they would have rejoined me at the initial operation,however policy in Scotland was 4% failiure rate,where their counterparts in london were running at 5%,albeit on carefully selected patients.As such they would not entertain not initially fitting a stoma since they were called in and suspended if the failiures rose above that ceiling

l guess what l am trying to say is that you do  need to push hard for the facts and the policy that controls the decision making within your health board.This said they may well point to the limited option you say that has been indicated.There is no doubt that rejoining lower down can cause people  more misery and some cannot cope for the long term it requires,and seek to get the reversal reversed,obviously not a scenario that doctors encourage.At the end of the conversation you need to be in a position where you can accept where you are going,if not and you need a second opinion to settle your decision making,then go for it.l would also point out that there are so many people who are only too happy with their stoma, and the recovery is months not years,but one size never did fit all.

Good luck with the next part of your jour journey,

                                                                               David

Hi there, the permanent stoma really depends on where the cancer is.  I had a 4cm lesion right at the exit point of my anus, so the whole rectum basically went, along with 14 lymph nodes.  Permanent stoma as nowhere else to poo from.  Me and Zeppy the Zeppelin have our moments!

ColostomyUK have some very helpful information, and you and/or your hubby could join their very helpful facebook forum.

I also joined a US-based APR (Barbie/Ken Butt) facebook forum which is specifically for people who have had their anus removed.

I've also been writing a blog about my whole cancer experience, part of which covers the stoma side of life. This might be a good place to start: stewart124.wordpress.com/.../ 

Thank you so much for your reply. I think my husband's case is very similar to yours in terms of location. 

I will definitely check out all the resources. Thanks a lot!!

Your blog is hilarious :) It's amazing how you manage to see through tough times retaining the funny bone.

I don't think my husband would take it this well. For sure. 

We are now faced with a complete metabolic response and after 27 fractions of chemo radiation he has his 3rd CAPOX tomorrow. 

We will complete the chemo and then reassess. His tumor was gone after chemo radiation. Nothing showed up on PET. 2 nodes that light up before also had no SDG uptake. 

His tumor was 8.7 cm now it's nothing. His CEA was 85 and now it's 4.3. He feels great. 

With all the good news one really wonders how to proceed. We are fully engaged with research and second opinions. It's not easy to make a decision with conflicting opinions from trusted sources. 

Glad the blog was worth a read!

It sounds like your husband's treatment regime has been pretty successful.  It sounds to me that at least five years of observation/monitoring are called-for?

Good luck with the rest of the chemo - my cycle 3 on docetaxel has been a proper wipe-out job, so expect him to be less than energetic for a while!

Best wishes.

Hmm, MRI was not as positive as we thought. He will have to have the permanent stoma after all. Something on that levator ani muscle that is stubbornly sticking. Sigh.

Ah, that seems cruel after all the other positive noises.  But as I found out, it's not the end of the world.

As mentioned above, have a look at the ColostomyUK website, they have a very supportive closed Facebook group www.facebook.com/.../. 

The US-based APR (Barbie/Ken Butt) facebook group can be quite informative too www.facebook.com/.../.

I wish him the best of luck with the surgery, and please be very kind to him for a couple of months afterwards!