Low Rectal Cancer Diagnosis - newbie on here

Hi AEC,

My treatment has actually finished now I am on a watch and wait scenario.

I hope you have responded well to the treatment so far and please keep us posted on your progress.

Kind Regards,

KevH

Hi Kev

Thank you. Mum has now got the nasty side effects kicking in from the Radiotherapy one week after her course of treatment which we were expecting,  these are why they wanted her to have the defunctioning Stoma. She is riding the storm with the sudden intense toilet trips, fatigue, nausea and because her tumour is so low, she can tell it has almost doubled in size due to the radio. She has asked me to ask you if you got intermitant tummy pains as it’s not one of the side effects we were expecting?

I know everyone has different responses but just wanted to ask.  Not sure if this will get through as we are experiencing lots of internet connection problems not related to the site this time, I don’t think.

Good luck with your results and best as always

Hannah

Hi Hannah,

I don’t recall any intermittent tummy pains as such other than if they were related to a pending need to go to the toilet. I would mention your concerns to the Radiotherapy nurses.

I also didn’t have the feeling that my tumour was increasing in size the idea with the Radiotherapy is that it will reduce the size of the tumour.

What I did find with the Radiotherapy as I was half way through the treatment I started to develop a sore entrance to the bum which when I raised this with the Radiotherapy nurse that they were the cause of this with the treatment as the tumour was low down. But once again please raise the concerns with the Radiotherapy nurses. They should be able to allay any concerns and clarify what exactly is happening.

 I was given some barrier cream for the skin which I was to use round the pelvic area and the bum area.I was also the day before starting treatment given this cream. I then had to trot on to the pharmacy as well as picking up my Chemotherapy pills I was supplied with some pills called Loperamide to help control the toilet visits if it was getting too frequent along with some pills to ease any bouts of nausea. I did go into the Loperamide pills a bit the nausea ones only had a couple of those on 2 separate days with one of those being the last day.

Has your mum been given any of these if she is okay to take them?

I think you will have picked up from my posts that I have a long term prescription for loperamide. My toilet visits haven’t fully settled down yet but I had an appointment with Professor Myint yesterday where he said that it was the External Beam Radiotherapy that was causing that even though I finished that phase of treatment on the 18 May. He says that it could take a few more months for that to settle down yet. What he did say was that a way to ease the visits down was to ease back on any fruit and same for fibre consumption. So white bread now for a while for me I do love my whole meal bread.

My appointment yesterday involved him doing a scope examination of the affected area which on that he said I have healed very well no signs of the tumour present. He then proceeded straight after that to do the sticking the finger up and he said he couldn’t feel that there was anything there either so that’s good news.

The disappointing thing was that he hadn’t been furnished with the MRI and CT scans I have had done on the 9 September locally. He has asked for them to be supplied to him and has suggested I chase the results of these up too.

If these are okay then I will have a fresh MRI scan in December and an endoscopy as well in December then in March I would have another MRI and CT Scan in and then to see Professor Myint again at the back end of March too.

Please keep us posted what the Radiotherapy nurses say about your mums symptoms and concerns. There your first point of call particularly whilst your mum is undergoing Radiotherapy treatment.

Kind Regards and thinking about you both xx

KevH

Hi Kev 

before you started with professor myntt did you have the results from the MRI and CT after the 5 weeks radio chemo   ? And had you had a complete response before treatment with Prof m or just partial ? Thanks for your help

Annie xxxxx 

Hi Annie,

I went to see Professor Myint before I started any treatment. He had access to my MRI scan that I had done locally which along with the endoscopy biopsy and the further samples taken under anesthetic formed the basis of my diagnosis. He wasn’t happy with the clarity of that Scan so got me to go back over there to have a fresh one done then to see him again the same day.

The fresh scans were clearer images and he then determined that the Papillon treatment would be doable but I would need to start the 5 weeks of Chemotherapy and Radiotherapy in order for the tumour to be downsized.

 I had that treatment then approximately 4 weeks after that phase of treatment I had a fresh MRI scan done and saw the local oncologist and he said I had a very good response and that the tumour then resembled scarring and said that assured me that I would be a suitable candidate for Papillon.

• 2 weeks later I was seeing Professor Myint and started Papillon treatment. After Professor Myint confirmed what the local Oncologist had said. What Professor Myint said at the pre treatment appointment was that we could leave it at that but there would be a 30% chance of the Tumour coming back or we could do the Papillon treatment and this would reduce to 11% chance of it coming back.

Even if I had gone for the so called Gold Standard of the big operation and having a permanent bag there still is a 6% chance that it could come back. I also looked at that standard as creating 2 problem areas not only the tumour area but I would then have another potential problem area where the bag would be connected to.

All indications are at the moment seems to indicate that there is no sign of the tumour is there but I have to chase up the results of the latest scans as Professor Myint wasn’t furnished with these to be certain.

Kind Regards 

KevH xx

Thank you Kev we will. Very disappointing about your scans, I don’t think it’s uncommon unfortunately,; we experienced this on a past referral. A shame we can’t be in control of this ourselves.

It’s such a long journey with your treatment plan, but hopefully it will all be worthwhile!

take care and thank you for your reply.

Hannah

Hi Hannah,

Yes I will be chasing up the scans next week.

Is your mum 1 week into the Radiotherapy or is it that she has finished the Radiotherapy and it’s 1 week after finishing?

I would still contact The Radiotherapy nurses either way but was unsure as to where you were at.

Keep us posted and I hope you get some answers and get your mum sorted and things settle down soon and see what your next steps are.

Kind Regards,

KevH

So mum has had 5 fractions over 5 days and that all she will get.  We knew that the side effects were going to be severe because they were not going to give it without a stoma.  We have the colorectal nurse number and if we get worried we call.  Mum is 2cm up so right at the entrance an 4cm, so out of Papillon criteria. The hope is that this short course of EBRT will downsize, so contact Radiotherapy will become an option. This would amazing if this happens. Mum was deemed not fit for Chemotherapy so I’m not sure if this will have a result on the outcome.

will keep you posted. Going on holiday tomorrow after 7 months of trying to get me the treatment she wanted I am looking forward to the break.

thank you for your support on this terrible Journey, Mum now says ‘ask Kev’ so thank you so much!

Hannah

Hi Hannah,

I hope you enjoy your break, you deserve a rest.

We are all on here to support each other in what way we can. I am not an expert but can share what experiences I have had as a lot on here will do the same.  A lot of us are in different places with the symptoms and diagnosis and what treatment plans are being mapped out for us. But really it should be down to the patients as to what path to take and should be furnished with all the information and choices so that they can make that  an informed choice.

Me and my Wife attended a Patient Support evening on Wednesday. Professor Myint was there as well as Mark Davies who wrote the book saving my arse. A lot of the meeting was taken up with patients that had gone through the Papillon treatment and what was evident in their stories was the lack of choice given to these patients. Every one had gone through what I had where everything was mapped out for them by the Multiple Disciplinary Teams that they were going to be directed down the so called Gold Standard route. One of these patients was a former NHS Manager and he had to do quite a bit of research to find out about Papillon.

He was saying that a few years ago that the constitution of the NHS was updated and that was supposed to provide choices and then to Empower patients in making choices on their treatment. He said that how are patients supposed to be making choices if these are not being laid before them. The only one way being laid before them being the so called Gold Standard.

I found the meeting uplifting as the patients that spoke all have been treated with Papillon varying from 10 to 15 Years ago and still not had to have the Gold Standard treatment.

Have a good rest and we can catch up again after your holiday. I too am heading on holiday at the beginning of October and looking forward to that after the journey I have had and looking forward to the future with a lot more positive thinking.

Kind Regards,

KevH xx

Thank you for your reply Kev and the interesting information about the meeting. I have followed your journey with interest and do wish you all very best with your treatment. You too have a fantastic holiday!

Take care.

Hannah