Rectal cancer

Hi and a warm welcome from me although I’m sorry that you’ve had to find yourself here. I can imagine that this was a huge shock especially at your age. Have you been tested for anything genetic-wise like Lynch Syndrome?

Chemo is not nice but it is doable. It’s sometimes worth keeping a diary of how you’re feeling so you can let the nurses know if youre having any problems and also you may find that a routine of good days and bad days follows so you can anticipate how you’re going to be feeling and plan your days accordingly. 

Please do not google - stay on here and the Bowel Cancer UK Board (which also has a special section for young people) and ask anything you want - there is no question too daft or embarrassing. If you need any help with your stoma then Ian aka over on the Ileostomy, Colostomy and Stoma Support Board is our resident expert.

Hope you continue to cope with the chemo well - it helps to focus on one stage of treatment at a time so concentrate on getting the chemo finished then move on to the radiotherapy.

Take care

Karen x

Thanks for reply Karen, think they have done the genetic test, got a history of cancer on my dad's side,  had that many test done the past while I can't keep track tbh, I've now accepted that I've got cancer and dealing with it day at a time as you said it's the best way, have my ups and downs days tho, and defo staying off doctor Google lol, thanks for the advice tho much appreciated, the surgeon says the goal is cure so until he says different am fighting this all the way, thanks Joe x

Hi Joe

Trust your surgeon and stay positive and work and fight with him to score the goal and be set free.

I've joined into the conversation as my friend  made me aware of your post and I'm sorry to hear that you've been diagnosed at such a young age, unfortunately as especially with bowel cancer it is believed that you have to reach a certain age before you can get it and here you are at 29 telling us that you've got bowel cancer well below the age the book tells doctors that it can be contracted, perhaps it is time for screening even if it is voluntary to be available to all who ask for it.

We have a group for people Diagnosed at Young Age which you may want to join unfortunately it is not a busy group but I would like to see more people at your young age joining and although its for a young age no upper age has been set. You may want to join and just browse through the posts to get the drift of the discussions.

Having a colostomy is not the end of world for anyone it depends on your attitude to having one, a stoma is not the cause of the disease it is part of the cure and in many cases it's a lot better than the alternative.

Each day in the Ileostomy, colostomy, urostomy and any other stoma support group we discuss the effects that a stoma has on our lifestyle, what happens when we poo, how what we eat affects our output and the sharing of information, little tricks we have tried that makes life easier and I would like to invite you to join us over in the stoma group and ask questions on anything and I really do mean anything to do with being an ostomate and if you have tried something that has helped you, share with us to try also.

But the main thing you can do is to remain positive and keep fighting each day until you achieve your goal.

Please keep in touch with us and keep us informed how you are getting on and always remember 's always available to chat with you and give you any advice you need.

Ian

Thanks the bodach for reply, your message is so true, I would happily have permanent colostomy if I can be cured it's just a daily part of my life now, and tbh had not much affect on me apart from it swells up from time to time but stoma nurse says that normal, I'm confident I'll beat this, only been on this site from last night and reading other people's stories makes the world of difference we're all in the same boat, I'm glad I've found this site think it will be big help and support, thanks joe

Hi Joe,

Although I'm about double your age, my experience was very similar to yours.

I had short-course radiation, but wasn't able to have chemo. because my immune system is too weak.

Sadly, the treatment didn't work for me, so I am now inoperable.  I have my fingers crossed that yours does do it's job and that you can be cured.Yes, the treatments can be horrible, but if they work....what the heck?!?!

The Colostomy isn't the worst thing that can happen to an individual. Educate yourself about how to live with one, and become as indipenden as possible. Even have a "personal" relationship with your stoma. Fell free to chastise him (or her), or even share a good laugh with him-or-her once in a while !

Good luck with the future!

Thanks canlin for reply, I'm so sorry to hear that your inoperable, do u mind me asking when your diagnosis was, all i can do is pray and hope my treatment works for clear margins,  I wish u all the best in the future to, thanks joe

My husband was the same story as you but a bit older, if you read my profile you will see his journey. it’s been s long hard year for him but we are hopeful now that they have got it. Wishing you best of luck x 

Just seen your story gives me the world of confidence, glad your husband doing alot better now, I'm hoping mine goes the same way surgeon said it would be a long hard year but I'll get there, and being young I should tolerate treatment, I'm just taking it day at a time, I know how your husband feels about sitting about bored I was a carpet fitter always on the go, so Netflix for me for the next 6 months lol, as you said laughter and high spirits makes things alot easier, glad to hear your story thanks x

 I appreciate the kind words Joe.

Please not worry about me.  I am at peace with what has happened. Honestly, I think that that is the best approach one can have in this sort of situation. Let's call it a "Zen" mode.

I feel that I have had a very good life . I am lucky to have been married to a wonderful man, and have enjoyed my time with a fabulous daughter too. She, in fact, is the one who led me to this place of peace.  We both are very much into yoga, ---not only the practice, but the philosophy as well.  While I was in hospital after my colostomy surgery, she kept sending me links to vlogs by philosophers who helped put everything into context.  Yes---I will die. But, yes --- don't we all eventually die???  This fact is liberating in a way that never occured to me.    Now there is no need to be concerned about things that might have worried me in the past.  I now know that I won't live so long that I might descend into dementia. I don't have to worry about running out of money in my old age. My arthritis won't cripple me. These are the things that I might have had heavily on my mind, and now they don't bother me. 

Please understand that I really do mean that I am at peace. There is no point in railing at what can't be undone.

I am confident that things will not turn out this way for you.

The fact that I said that our stories sounded similar is because you mentioned that your diagnosis came about two months after you had been told it might just be hemorrhoids. Also, there is a family history of cancer.

In my case, I wasn't overly worried about cancer as my mother and sister both suffered from IBS. My symptoms that popped up seemed to fit that profile as well, so my doctors were of the opinion that was the situation that we were dealing with.

In late January, I did a  Fecal Output Test (Stool test). My one done two years previously was clear, but this one came back positive.

It was quite a shock, and my family doctor referred me to a Gastroentologist for a consultation.

Long story-short... I had a Colonoscopy on Feb. 9th, which revealed a tumour.

My specialist felt that he could safely excise the tumour as it was still contained in one mass withing the lower colon (he said it was about stage 2-3). He wanted to shrink it before operating though, so he sent me to a radiation oncologist, as well as a medical oncologist to see about chemo.

As I told you, I have epilepsy, and one of my anticonvulsants (my most effective one, actually) has always lowered my immune system to the point that I am considered chronically neutropenic.

Radiation could be done, but chemotherapy would likely have been catastrophic should I ever catch anything, since it would have destroyed whatever bit of immune that I had.

The radiation was done in late Feb./March, and after six weeks I was to be checked to see if I could have the surgery.

I had a sigmoidoscopy, followed by an MRI two days later as the doctor was not pleased with what he saw in the results of the first test.

He called me late in the afternoon following the MRI to tell me that I had to get to the Emergency Dept. of our hospital immediately, and that he would meet me there. He joined me about an hour after I arrived and had to give me the bad news, The tumour had not shrunk during treatment, but it had actually grown, and had now pierced through the wall of the colon. As a result, I had developed a severe infection in the pelvis and needed emergency surgery to give me a colostomy. It was do or die at that point. A;lso, the cancer had now progressed to stage 4 and was likely to end up spreading through my body.

So, I know that this is a grim story to be telling, but I highly doubt that this will be your future. It sounds like you can have the necessary treatments and hopefully they will get you through. You are young, with a good immune system, and you haven't mentioned any other previous conditions that would lessen your chances. For what it's worth, can I say that I have a good feeling about your prognosis.

Oh...one other thing that I noticed in your first post is that you mentioned cancer in your family history. I know that in the past, when I would be asked if there was any history of it in my family, I would casually reply :" Well ,my maternal grandmother had it, but it was in her kidneys. No one else."     I didn't realize that cancer is cancer .  It doesn't matter how many people in your family have shown it, or what type it was.  You do have the genetic likelyhood of getting it too!  I think the doctors have to make that clearer to the public, no???

Anyhow, stay strong.... but be kind to yourself right now. Remember... You are the #1 person you should be caring for right now.

Hello

Sounds like you are in a similar situation to what I was in about 9 months ago...

So I'm a little older than you - 41 - 40 at diagnosis. I too was being treated for hemmies for almost 2 years before I lost my patience with the situation and demanded a colonoscopy and low and behold, there was the alien.

So mine was also a bit on the big side and I was showing lots of areas of inflamed lymph nodes so my oncologist team also decided to give me "systemic" chemo first - similar to you, I did 4 cycles (which I think equates to 3 months). I tolerated it quite well, there were ups and downs and "annoying" side effects but it was - as many people say on here - doable. I just made sure to stay as healthy and fit (physically AND mentally) as possible. So eating healthily, also a lot of protein and I started running - nothing crazy but enough to keep moving and in turn this made me feel strong and improved my mental health too.

Then in May I did 25 sessions of radio-chemo and the outcome was good - I had a good response to treatment so next step.... ALIEN EVACUATION! I had my operation just under 4 weeks' ago. I'm still getting used to the fact that it's gone! They removed 35 lymph nodes of which 2 came back positive so this means a bit more chemo - just like I did before, 4 more sessions. At the moment I'm still recovering from the op (Also had some crazy leg issues which I'm going to see a neurologist about today) and then I think around mid october I will be starting the "mop up" chemo.

You sound like you have the right attitude so you keep on doing what you're doing. Do things that make you feel happy, laugh a lot, stay active and remember you are young and strong. 

With the chemo the effects get more intense the more you do and sometimes I would get a bit down as it made me feel "ill" but then I would remind myself it was the treatment making me feel like that not the illness so it was good I felt side effects as it meant the drugs were doing something...

Wishing you all the very best, and I know it feels like a long time but whilst I'm typing and I think almost a year has passed since I was diagnosed, it does feel like it's gone quite quickly in retrospect.

Bug hugs

Sxxx