Alternatives to Abdomino Perineal Resection

I am really sorry to hear about your diagnosis. I can only speak from a relatives perspective, my husband Andy was diagnosed with a low rectal tumour in Oct 2013. As I understand it APR is the surgery used for very low rectal tumours as if they try and do other surgical procedures such as a Low Anterior Resection, there is no guarantee that they will get clear margins and there is a high risk of faecal incontinence. When they talk about Palliative- I am assuming they mean radiotherapy +/- chemotherapy as opposed to curative management (surgery- AP Resection). Surgery will be the only method of curing the cancer as it is then physically removed. I am sorry as I am not giving you the answer you are looking for. I just wanted to share our experience- for my husband the hope of a cure helped him to accept a stoma. 

Hi 

Hi Cathi, 

I am very sorry that you have had to find yourself here, but you will receive lots of support on this forum. I want to give a different perspective and some hope. I was diagnosed T3N?M0 in 2012. My tumour was 4 cm long and 4 cm from the opening of the rectum. I was advised that I would need a permanent stoma. I was offered chemo and radiotherapy before surgery. I had 3 months of chemo, then radio with chemo. I then waited 3 months and had a colonoscopy, MRI and CT scan and the tumour was no longer visible on the colonoscopy and appears to be only scar tissue on the MRI.  To date, I have not needed surgery and I am closely monitored with regular scans and camera examinations. 

These are not typical results, but there are studies being carried out in the UK and Brazil which indicate that some patients can experience a complete pathological recovery from radiotherapy and can then be monitored instead of requiring surgery.  I do not want to give false hope - raising hopes and then finding that this is not the case in your instance. 

I found out about this strategy via a colleague of Professor Bill Heald at Papillon. 

I certainly agree with EdP that you should seek a second opinion. I would ask for chemo and radiotherapy - it is possible that the radiotherapy will shrink the tumour to make it possible that you will not need a permanent stoma. 

However, if you do need a permanent stoma bag, please do not despair. I met a friend of my wife who is in his late 30's with a permanent bag. He has a young son, plays football and golf, goes cycling and leads a very full life. I have also met a couple of ladies in their 50's, one of whom runs marathons with her bag.  I was reconciled to the bag before going down my current treatment path. 

EdP, I am very interested in your comment about long term recurrence rates.  In the scenario where I am in, with no evidence of the tumour, if I experienced a local recurrence would I be in a worse position than if I had started as a new patient. That is more a question for my oncologist, but I value your opinion. 

Very best wishes. 

Matt XX

Hi Cathilj,

I had my APER surgery nearly 4 weeks ago. I had low rectal cancer T3 N2 M0. I had 5 weeks of chemoradiation therapy ending on 27th December...

When I went for my follow up after scans in February, I was told that my tumour had only slightly shrunk. It was 4cm in size. So I felt really disappointed that I'd been through all that radiotherapy for pretty much no reason. 

After surgery I was told that there was only 1 affected lymph node left, so the chemo had mopped up at least 3 of the nodes that were affected before treatment, which was obviously a good thing.

I know that I've been through exactly the opposite of what you are interested in, but I thought I would tell you about the tumour not shrinking in contrast to the person who has said theirs completely went and they didn't need surgery.

I think your oncologist, by using the term palliative care, is referring to the fact that if you choose not to have the surgery you will be pretty much looking at a palliative care outcome, in that you will most likely be terminal (sorry, I didn't know how else to put it, it sounds so harsh and horrible) 

I'm not going to sugar coat how I feel, I am experiencing all sorts of mixed emotions at the moment, ranging from gratitude that I am alive to wishing I'd never had treatment. I know deep in my heart that if had chosen not to have treatment and I had so long left to live I would have regretted my decision. As hard as this all is I know that I have so much more of a chance now to enjoy life, watch my beautiful niece and nephew grow up and not have to watch my family crumble around me as I neared the end of my life...

I sort of sailed through everything from the moment of diagnosis, not in an 'everything is so easy' kind of way, but in a robotic, dreamlike state. I'm still finding it hard to believe that I have cancer and have been through all this invasive treatment. So I didn't ask questions as to what my alternatives were, I just nodded my head when I thought I should and went along with whatever I was advised. I don't know if I would have made different choices had I not felt so out-of-body....

If you want to ask me anything about the surgery and its outcomes please do, and I will answer honestly.

Take care, I hope you find some peace of mind very soon xxx

Hi Matt

It sounds like what you had was more conventional chemoradiotherapy than Papillon (although not knowing the full details it's difficult for me to say). My understanding is that the latter is contact radiotherapy rather than external beam radiotherapy (the latter being the conventional form for more advanced rectal cancers). External beam radiotherapy is more penetrating than contact i.e. it can get deeper in and treat more advanced tumours to shrink them. Contact tends to be reserved for more 'superficial' tumours that have not extended very deeply through the bowel wall and tend not to have lymph node involvement (T1 or, at a push, T2). The reason that contact radiotherapy local recurrence rates would be higher for a T3 than conventional external beam therapy is that there is a high chance that the radiation may not have reached all cells in the parts of the tumour extending deeper into the bowel wall. So, although the tumour may appear to have disappeared by CT or colonoscopy, there is a considerable risk that small clusters of cancer cells could have been left behind which may, over time regrow to form a visible local recurrence. I think your situation may be different though in that, because of the more penetrative nature of external beam radiotherapy, in most cases, all of the tumour cells in a more advanced tumour are killed. The total recurrence rate for conventional radio + chemotherapy resulting in a complete pathological response (what you appear to have had) is VERY low. The local recurrence rate is even lower. In terms of a local recurrence after any form of radiotherapy, it somewhat depends on where exactly the cells regrow in the bowel wall. Because with a T3 the cells could pretty much be present in any of the bowel layers every local recurrence could be different. For example, if the cells that regrow are only in the surface layer of the bowel then you would probably be no worse off than somebody with an early T1/T2 tumour. If, however, the cells regrow in the deeper layers, the tumour could be more difficult to remove. Part of the problem with radiotherapy is that it does tend to select for the more aggressive cancer cells (less aggressive ones are easier for the radiation to kill off). As such, local recurrences have a tendency to be more aggressive than the original tumour and more resistant to radiotherapy - hence the severe consequences for the patient. I wouldn't worry about it though as local recurrence rates with conventional radiotherapy nowadays are VERY low (less than 5% in most studies). The vast majority also occur in the first 2-3 years after treatment as well. Since you were diagnosed in 2012 I would think that you would be EXCEPTIONALLY unlucky to have a local recurrence now.

Best wishes

EdP

Hi EdP, 

Many thanks, as always, for a very detailed, knowledgeable response.  That was reassuring and useful to know. 

Best wishes. 

Matt

Hi there,

I know what you are going through. I had a similar disbelief although in slightly different circumstances.  I was diagnosed a year and a half ago at 42 with a tumour in my colon and one in my rectum they had thought was a polyp and had removed already (it turned out to be cancer). They explained that the only way to stage the lower cancer was to have my rectum removed and in my case that meant a full bowel removal and a permanent illeostomy.  I was given the choice. 

I was told 1. they could just treat the top cancer and take the chance on the lower one. ( but they may be coming back to me in 6 months telling me it had spread all over and I could maybe have prevented it) or 2. I could have the radical surgery leaving me with a permanent stoma (but a week after surgery I may find out there was no evidence of spread in the surrounding tissue and it had been unnecessary) 

Great choice eh??!! i couldn't understand why there wasn't a third option. And spent a long time looking for one but in the end decided I had to give myself the very best chance for my childrens sake (both also under 10 at the time)

So I have a permanent illeostomy and the good news is, it's really been a lot lot better than I thought.  I thought I'd have to change my life, but I really haven't. I think it's been the least difficult part of this journey to be honest. It's just a different way that's all, and it's amazing how quickly you get used to it. The first week or so is tricky and it's a learning curve but it's not as bad as you imagine at all.Nobody knows unless I tell them. I dress normally,  eat normally, holiday normally (I've flown long haul twice and swam in the sea and pool every day), party normally and apart from making sure the kids don't jump on me too hard I'm a certain place, life is just the same. 

I do think you are right to be as informed as possible and I wish you every luck in your journey, but my advice if it's worthwhile would be this.  If you have to have the Apr, spend some time trying to find the very best surgeon in the field you can, even if that means paying for a 2nd opinion privately and then asking to be moved to their NHS list. That's what I did a) to satisfy myself I'd got every option available b) to know that the job was done as well as possible . I have not had a single problem with my stoma, or a single blockage and maybe that's cause I had one of the best (or maybe I'm just blessed? ) I think it cost me £200 for the private consultation but again am lucky to live in Leeds and so have access to the best as well.

I hope you get another option but if not, believe me you'll be fine

Clare

I can only speak for myself, 8 weeks ago I had APR operation with Colostomy, I had T2 anal cancer and radio and chemo exactly a year ago which worked for 3 months and cancer came back with a vengeance. I had 14 days to decide, it’s a massive operation, but after 11 days in hospital 6weeks on my side at my daughters, I’m now home, driving walking 4900 steps a day. No one opts for a colostomy, but an attitude and positivity to survive and get back to normality has made it quite easy for me to cope! I’m 61,divorced but determined that there is life after cancer and I’m going to grab it with both hands and live it to the full. 

I will add that there is a risk with skin break down if you’ve had radiotherapy in that area - I wish I’d gone for the APR first as radiotherapy was excruciatingly painful. APR with flap and skin graphs was tough but I had the most amazing team looking after me! For all that is wrong with NHS, I simply cannot fault it.  All I can say is thank you for saving my life. 

Hi Irwin

Thanks for your reply, although the story has moved on! I'm glad your choice worked for you, and that you are recovering well.

I did go ahead with the Papillon treatment combined with chemoradiation. There were four Papillon boosts and 5 weeks of chemoradiation. The treatment achieved a complete pathological response and I am 16 months in remission. The radiotherapy was pretty unpleasant but I viewed it as a step to my recovery, so did what I had to.

A longer version of the trials and tribulations are in my other posts. I'm obviously glad it worked for me, bearing in mind there are no guarantees with any cancer treatment. I believe the Papillon treatment made all the difference. Time will tell. I knew that I would not come to terms with a colostomy unless I had tried everything else. I am a positive and upbeat sort of person, and am determined to survive, and my choice was difficult to make due to my surgical team not being at all supportive and frightening me by telling me I would die without the APR. Well I am still here!

All the best for the future.

Catherine

Hi Irwin

I found your advice very positive and timely as I am waiting for an APR op, to take place within the next few weeks. I know it s a comparatively rare procedure and I haven't found anyone else who has experienced it.

I was diagnosed with anal cancer in August 2016 and was to be given  with the usual radiotherapy with 5 days of chemo before and after the radiotherapy. Unfortunately after 3 days of chemo I suffered several angina attacks ( a known side effect) and my chemo was terminated. I had never suffered any heart problems previously and I may add since. My surgeon had recommended a temporary ileostomy to enable the radiotherapy - which was reversed July 2017 . I would say now that I wish I had not had the ileostomy  as it has caused 2 hernias which have required surgery - perhaps I should have just have put up with the radiotherapy ( the ileostomy is given to reduce the pain of treated tissue).

However November 2016  and the MRI scan showed the cancer back and I feel fortunate that I have been offered a second chance in the form of an APR. I feared this op during my initial treatment - but it is the only option if anal cancer reoccurs and I am so grateful for it.

Like you I cannot praise the NHS enough - they are there when it really counts. I know I have a 6-7 hour op which includes re-building my pelvic floor (plastic surgeon required for this) ahead of me. Any general advice - especially concerning recovery and what I may need to do to make living easier at home? 

Thank you