Low Rectal Cancer Diagnosis - newbie on here

Hi Kev Just one thing..,how low was your tumour ? Was it just size or how low for papillon? Best x 

I think mine is about 3cm up from the entrance. Not too low for Papillon but too low that if I ended up going down the operation route then I would end up having to have a permanent stoma.

Some people have tumours a bit higher up than mine and they have an operation to cut it out and have a temporary stoma and after a period of healing and checking that everything is clear they get reconnected back up. Mine is at the point that you connect back up to so if they cut it out there is nothing to connect back up to as that bit would be cut out. Leading to a permanent stoma the only option.

So that’s why I have explored the Papillon Technique. It may come back which if it does then I will have to face up to the big operation then.

So your case as well as the size it will be a case of the position too. In Hannah’s mums case it sounds as though hers is too close to the entrance at the moment even for Papillon to be considered.

If I was you in the time you have now between your appointments I would get yourself a little note book and write down all your questions leaving space for the answers you get from the consultants and if you haven’t already started to make sure that you take someone with you as they may pick up on something that has been said that you haven’t. As you are the one affected your head can be all over the place so might not take in everything that is being said.

Kind Regards,

KevH

Hi Annie,   

I am glad you got some good news.   Hopefully the tumor isn't too large and you won't need to have a radical surgery.   My MRI showed that my lymph nodes were enlarged and that the tumor had left the rectum and invaded the fat in one section.   In the PET scan, the lymph nodes didn't glow green, however for them to glow there needs to be a certain amount of cancer in them.    

Now just 5 days to my surgery.   I had a follow up ultrasound which showed the clot had gone which was good news.  I went to see my GP yesterday and she was very pleased with the results and told me to stop taking the blood thinners on Saturday.  Then, like everything in my journey comes the unexpected twist!   The nurse from the hospital rang; apparently my case is causing lots of concern; and told me I have to go on injections to treat the DVT - and I am going to have to learn to do them myself!   I have to have 2 injections on Sunday and one on Monday.  The op is on Tuesday.   During my stay in hospital I will be having two injections a day and when I come home I will have to continue the injections until after the liver surgery!  Not Happy!  I hate taking pills but I hate injections much, much more!  

Cancer really sucks!   I am praying that your cancer has been caught early and is easily treated.    Did you have many symptoms?  

Kind regards 

Rebecca.  

Hi Rebecca thanks so much, yes a bit of good news at last but still the dreaded MRI results !! Presume they only know about affected lymph nodes from that and not CT? The consultant seemed to think it was about 3cm but I'm not sure how low but think it is quite low so not sure what they will suggest - I know she was talking about radiotherapy to shrink it first and then see. I've had minor bleeding, more regular bowel movements ahd some discomfort feeling but otherwise apart from this have felt very well which is why I was so shocked. It really is a silent one and I think everyone should be warned to have colonoscopies at any of these signs. 

Gosh only a few days for you before surgery - I am thinking of you and those injections sound bit particularly nice but they seem to be being cautious and that's good. Did you have any symptoms before diagnosed ? Will they take the lymph nodes away ? You are doing so well Rebecca - it's so much to cope with but it will be worth it xxx

Hi Annie,   

My first symptom was in August  2016 when I had bloody discharge from the rectum.   I put the discharge down to the fact I had a virus and was coughing so hard my whole body ached.   I didn't go to see the GP until later that year.  she did a rectal examination, told me I had hemorrhoids and gave me a script for hemorrhoid cream.   For a year I was treating myself for hemorrhoids and putting all the symptoms; red blood from the rectum; changed and irregular bowel habits and the feeling that I had not fully emptied my bowel down to hemorrhoids.  

The symptoms gradually got worse; feeling tired all the time, a constant sense of being 'full', weight loss, abdominal pain, and an awful dragging feeling below when I was on my feet.  The symptoms were getting so bad that I went to a different doctor who started sending me off for tests.  Bowel cancer often has no symptoms; my surgeon thinks the cancer had been there for 6 years.   However the more advanced the cancer, the worse the symptoms become.   

From what you have said, your tumor is probably still fairly small;  my first MRI showed the tumor to be 7 cms and that it had left the rectum and invaded the fat.   The MRI also showed enlarged lymph nodes.  Cancer spreads in two ways, via the lymph nodes and the blood stream.  I will not know until after my surgery the full extent of my disease and whether the lymph nodes are involved.   Although I am not a medical person, I think that follow up chemo is a good idea to kill any microscopic cancer cells that may be still floating around after your treatment.  This is something you may wish to discuss with your medical team.     

The earlier the cancer is treated, the easier and less invasive the treatment.   You are also fortunate to live in the UK and have access to the Papillon treatment; which is is not available in Australia.   Hopefully, your cancer will fit the criteria and you will be able to have it treated that way.   The wonderful news is that it hasn't spread to other organs.  

I am so not looking forward to those needles, apparently I have caused quite a stir at my local hospital!  Although I hate the thought of having to have 2 needles a day I am grateful that I am in the care of such a thorough medical team.   I have been given some special high protein drinks; 3 per dayprior to the surgery; to aid recovery.     Then I have a high carb drink to have 2 hours prior to the surgery.  

Still feeling very afraid, but hoping that i come through it all and have a few good years left; although I have never wanted to get really old; I am 66 and prior to getting cancer was leading a full and happy life.   

Once again, sending my warmest wishes and prayers from Australia.   

Rebecca.   

Hi Rebecca

I think the blood thinning injections during your stay in hospital and then for a few weeks after is standard treatment here in the uk.

I was given a box of injections and a sharpie bin to bring home with me and, like you, I hate needles and still can't watch my bloods being taken even though they do that daily too.

I was told that a district nurse could come out but it's a 5 second job and it seemed a waste when I'm sure they have more important things to do so I took the plunge and the nurses showed me how to do it. 

You do it in either your tummy or thigh, pinch a bit of skin, push the needle in at a slight angle, press the end and that's it. It's not a big thing with a long pointy needle - more like what I imagine diabetics use. I was black and blue by the end I must admit.

Please please make sure you do them though. I was readmitted with a problem a month after my op and even though I was on the injections whilst in I developed a large clot in each lung and I'm now on tablets for life. The surgeon suspects it may have been caused by the cancer and the chemo that I had post surgery but the pulmonary consultant doesn't want to take any risks.

Hope the op goes well - try and get up and walk about as soon as you can and take regular walks up and down the ward - it aids recovery and will hopefully prevent any more clots appearing.

Take care

Karen x

Hi Karen,   

Thank you for you reply.  I developed the clot a little after my 5 week course of chemo/radiation therapy finished.   I was just beginning to feel a bit better when I I got pain in the leg which turned out to be DVT.    I have been on medication and it has done the trick.   I was aware that I would be given blood thinning injections post op, just didn't expect to have them before the operation and for most of the rest of the year!   I have metastases in the liver which are being operated on after I have recovered from the bowel surgery and have been told I have to have the injections until the liver mets are removed and for a good while after the liver surgery.  When I recover from the liver surgery they want to put a port into my chest to deliver more chemo therapy.  

I am SO over it all and it has barely started!   I am struggling to see the point of going through all this.    I realise the medical team are acting in my best interests, but I have never really wanted to be old.    I am 66 and the best years of my life are gone.   We all have to die some time.

As you can probably tell, I am having a bad day.  

Kind regards

Rebecca.          

Hi Rebecca

I'm sending you a big hug. We all have rubbish days and it seems a never ending journey of operations, treatment, appointments etc. but you will get through it and 66 is no age - you may consider the best days of your life to be gone but that doesn't mean that aren't some very good ones still to come. The medical team seem to have your treatment plan sorted out and you'll still be able to carry on with life and walking your dogs with the port in your chest.

I finished my chemo a year ago and it seems a faded memory now. I've had my stoma reversed but still worked and went on holiday when I had it.

Do you have a local support centre you can contact to have a chat with or arrange some counselling? Perhaps try and plan some treats for when you're starting to feel a bit better even if it's only coffee and chocolate cake in a dog friendly cafe.

Please keep posting and let us know how you're doing cos we might be a long way away physically  but we're right next to you in spirit

Karen x

Hi Karen 

It sounds like you are doing so well. Good to hear when you are at the start of the process. Could I ask you whether a permanent stoma was every suggested as it sounds like you had a reversal. Many thanks x

Oh Rebecca , that’s such a shame you are feeling overwhelmed. All I can do is reassure you that there is a great life the other side of a resection . It was draining for my mum going through it but she lives a good quality life now . 

Best foot forward as my mum always says . 

Take special care,

Court