Low Rectal Cancer Diagnosis - newbie on here

Hi Kev

yes you are right, sometimes I am getting replies but no notifications ? .. thank you so much for your response, that makes me feel so much better. 

Did you have your radio on your back or front as it is a bit confusing ? Does it matter do you know ? Did you use the loperamide during treatment ? As I am starting to have more frequent toilet during this radio - is that normal ? As I thought it would get better and after radio does it improve ? 

Thanks Kev, the waiting to know if it has shrunk is hard isn't it .. but my original symptoms disappeared almost after the first week so something must have happened I am hoping.

How are you getting on with Prof M and your treatment ? I hope very well.

Lots of love 

Annie xxxx

Hi Annie ,

The site upgraded to a new platform that has caused issues . It is being attended to but is causing problems . Hope you are able to work round it for now until it is resolved. 

Just thought I would keep you informed .

Hope your doing well . It’s good to have you contributing . 

Court 

Hi Court

Thank you for letting me know as I didn't want to not respond, inadvertently, to someone who has taken the time to reply. I watch all the posts and I am struck constantly by the unremitting support you give to everyone, along with always such an underlying message of hope. There are such great people on here. I will try to continue to contribute as much as I can that may be useful to someone, as my knowledge grows; as this forum has been a ray of light and source of knowledge desperately needed for me.

love Annie xxxx

So pleased to hear that Annie as I was a carer and limited in my replies especially to people just going through the diagnosis stage . My mum was stage 4 from the word go so it was a very different situation . It’s great to see people reaching out to each other .

Thank you so much for the encouragement . You made my day .

Court 

Hi Annie,

I was laid on my back whilst having Radiotherapy. They would move you about into position and once they had got the machine and me in line with the laser marks they would disappear and the machine would revolve a full circle round me stopping to give me a zapping at various points.

The toilet visits are a common side effect. They gave me a ring binder the day before I started treatment with a Radiotherapy booklet in there that detailed the treatment aims and the possible side effects. Which the frequency of toilet visits is one of the most common ones.

Also the day before the treatment as well as the ring binder I was directed to the Pharmacy to pick up my Chemotherapy tablets alo with The Loperamide pills to take as and when needed to bring the toilet visits under control. I was given some Metoclopramide tablets to help ease any bad bouts of nausea.

so far as The Loperamide tablets I wasn’t taking them everyday I just started to take them on the days I had been to the toilet more than 4 times. If that happened I would take a couple after that visit and then one after each subsequent visit till it subsided. I found that I had to do this on about 3 days out of the 5 weeks I was having Radiotherapy treatment. I have had the odd day since I have finished that course of Radiotherapy and as I said earlier things got stirred up a bit again since my second dose of Papillon treatment and I am still waiting for it to settle down again albeit I don’t seem to be going more than 3 times to the toilet but that’s not everyday that it’s as bad as that.

i did have a couple of days that I dipped into the nausea tablets. I only took one each time. I haven’t been into them since so I am presuming that it was the Chemotherapy pills that were causing that.

if they haven’t given you any Loperamide pills up front with advice on how to take them or some other alternative I would mention to the Radiotherapy nurses if your toilet visits have increased and they should be able to get a doctor to prescribe something to help ease that.

I think you will only really get some idea how effective the treatment has been once you have had a scan some time after you have completed your current treatment. In my case the Oncologist from Saint James said I had a very good response and the images from the post treatment scan resembled the appearance of scarring. The reason then for going ahead with Papillon treatment after was to reduce the chances of it coming back. I have finished all the treatment stages now I am on to close monitoring I have Blood tests beginning of September and a MRI and CT scans too then about 10 days after that I am over to see Professor Myint for a flexibly scope examination of the affected area.

I hope the rest of your treatment goes well for you I am sure it will. I only had minor issues as outlined above and in my previous posts but they have to cover every possible side effects with the booklets in the ring binder but not everyone gets them.

Keep thinking positive you are well on your way now.

Lots of love and hugs xx

KevH

Hi Catherine

i have just read your post and am very interested in what you have said. I had an anterior resection in January and have a ilestomy bag which I was hoping to have reversed. A sigmoidoscopy has just shown a recurrence at the tumour site the size of an orange in 7 months. I'm now having 12 weeks of chemo which may be followed by 5 weeks of radiotherapy then if the tumour has shrunk they plan complete exenteration!! Which has really shocked me. That is a complete removal of basically everything including my bladder and vagina. I have a feeling if violation already and the dread of this is terrifying me. Perhaps Sunny may be able to help me too?

Hi Suzanne E

Just seen your post and wanted to offer some support, such as I can.  You can see my cancer experiences on my bio (I too had a local recurrence unfortunately) but a friend of mine, who is in her mid 70s, had to have the exenteration surgery a couple of years ago.  She started off with vaginal cancer. She was so shocked when she was told of the surgery and said "no way" but the surgeon told her to go home and discuss it with her family and he was sure she would agree as the other option is not good.  She had the surgery which is very major and yes, she was very poorly for quite some time and lost a lot of weight.....BUT today she is so much better.  She looks well and goes out and about, seeing friends, has been on holiday, entertains at home (she is a great cook).  She went through a very tough time, but at the end of the day she is still alive and well.

She has to deal with two bags (colostomy and urostomy) which she says are "a ruddy nuisance" but she leads a fairly normal life otherwise.

I'm sorry I don't know your age  - forgot to look at your bio before composing this - and of course if you are younger then it is an entirely different perspective (loss of vagina particularly). I hope you can find other people on this site who can help.

Just wanted to let you know that I'd seen your post and am thinking of you.

Camelializ xx

Hi Court

Thank you so much for asking! Would you believe we literally found out last Friday that mum can now have EBRT locally and no Stoma!

This has taken over 6 months since the diagnosis to get this result by sheer persistence, referrals and second opinions! My message is never give up! Sometimes you have to fight for what you want until you get it!

I don’t want to say at the moment but I think there has definitely been an external influence in this result!

Mum should start treatment in the next few months. What’s more, we feared that in this length of time the staging my have changed but thankfully it has not!  If mum has a good response the next step would hopefully be Papillon if we are very lucky!  So it’s fingers crossed all round.  We not the side effects are not going to easy for mum but at least she now has some light at the end of what was a very dark tunnel!

with best wishes

Hannah

Hi Hannah,

It is good to hear your news that your mother has now got a better opportunity of treatment. You are right in your message of never giving up. I am pleased for you both and it will now give you something to focus on and I hope that your mother responds well to the treatment and has a decent quality of life which is important.

I have everything crossed for you both.

Lots of love and good wishes xxx

KevH

Hi Kev

lovely to hear from and thank you for your kind message!  We all feel so much better now there is a treatment plan.  I will send an update after the treatment. I know that there may be difficulties with side effects but I’ve leant and noted all the helpful advice you and others have given about this in past posts. That’s one of the reasons this site is so amazing!

I hope all is progressing well with you too! 

Best wishes

Hannah