Low Rectal Cancer Diagnosis - newbie on here

Hi Hannah

It's very peculiar your Mum being told the tumour is too low. My tumour was located very low - right at the join between rectum and anus - couldn't have been any lower really.

I did have to get a referral to Professor Myint. Hopefully your Mum's doctor won't be as difficult as mine!! My advice would be to email/phone the consultant's secretary and ask for the referral to be done asap. Your mum has a legal right to a second opinion. Professor Myint and his colleagues are the experts in Papillon treatment - don't be fobbed off by someonoe who doesn't know much about the treatment.

I do wish your Mum all the best, and you too - it's hard watching someone you love struggle with cancer.

All the best

Catherine

Hi Catherine and Kevin

Thank you so much for your replies. I would like to and get a referral for a second oppinion so that is very helpful. Mum originally thought she had piles, I think it’s about 1.5 - 2cm up.  Its been 3 months since diagnosis to get to this stage so it would be fantastic to think there is still some hope for mum.

Best wishes and thank you for such a quick response.

I’ll let you know how we get on.

Hannah

Hello All,

My last day at Saint James one more treatment last day of Chemotherapy Pills. Phew

I am in pretty good shape my biggest problem is my sore bum more so when visiting the loo. I saw the Oncologist yesterday and he had a look and the brought in a Specialist Nurse to have a look. She says I should heal up down there quite quickly and in the meantime she’s givinge some gel to rub in just pre toilet visits and straight after. This is supposed to numb the area a bit to ease any pain when passing motions.

Otherwise I have had the odd day with Nausea but only one that bad that I took one of the pills they had supplied.

I have had days of multiple toilet visits of which if it got too frequent I reached for the other pills they had supplied to stem the visits.

I am an expert in getting to Saint James  do you think I can put that on my CV? Lol

After today I will get an appointment in a few weeks time to see the Oncologist to check on my skin. I have an appointment for the 28 June with Professor Myint and my first dose of Papillon treatment.

I’ll keep you posted on my progress but so far so good.

Kind Regards 

KevH

Good to hear from you Kev. It's a lovely feeling when you take that last tablet and hopefully your sore bum will start to heal up once they stop zapping you.

Had to smile at your comment about St James. I'm one of those 'work and supermarket' drivers so I used to park in Halifax, get the train to Leeds then the bus outside the station to the Bexley Wing and then back again. Got quite good at which buses were quickest but also reminded me of why I'm glad I no longer work in Leeds and why does the heating on trains only work in summer?

Good good luck at your appointment with Prof Myint. 

Time to pat yourself on the back for a job well done and relax in the garden

Karen x

Hi Karen,

Thanks for your message. Yes had my 9am pills just a Zapping at 4pm and my 9pm pills then that’s me done phase1.

I won’t miss the traffic going and coming back from Saint James particular ly as there installing concrete crash barriers on the M621 and it’s causing havac as they have reduced the speed down to 30MPH which backs up the traffic considerably coming home at rush hour.

As I said earlier I’ll post updates as I continue my journey.

Kind Regards 

KevH

Well done Kev . Great to hear you are though that part .

take care,

Court 

Thanks Court.

I know it’s a bit back but how did you get on looking into the Papillon treatment?

Kind Regards 

KevH

Oh thanks for asking . They never actually got back to me . I discussed it with Macmillan and in the interests of being fully informed they provided the Nice guidelines and some information on Papillion treatment so people can read it up for themselves . Where appropriate I will just link it in . Interestingly Nice are asking for patients to provide feedback on their experiences iof Papillion , just  in case you have not noticed . They seem to be trying to pull information together due to the lack of research .  You might be interested in participating when the time comes . The more informationthe better .

Hope you have a good weekend ,

Court 

Hi Lisa,   

I am 66 and was diagnosed with rectal cancer 2 months ago and my life has changed forever.    In August 2016 I had a bleed from the bowel and went to see my GP who did a rectal exam, told me I had hemorrhoids and gave me a script for hemorrhoid cream.  She also sent me off for a blood test, however I didn't bother to go back for the results.   For over 12 months I treated myself for hemorrhoids but the symptoms were gradually getting worse,  I was constantly soiling myself and unable to go walking for fear of getting caught short.   

Last Christmas I was so tired and lacking energy I struggled to put up the Christmas tree.   By February the symptoms had become so bad I went to a different doctor at a different practice who sent me off for an abdominal X ray and blood test.   When I returned she said I should have a colonoscopy but as a public patient (I am Australian and don't have private health insurance) I would be put to the end of a long waiting list.  Instead she sent me off for a CT scan which showed a suspicious thickening in the rectum.   She called me back and organised an urgent apt to see a surgeon.  

Both the GP and the surgeon told me I had rectal cancer, however I did not want to believe it.   Initially the surgeon told me he could remove the tumor and I would not need to have a colostomy.   After colonoscopy, he told me I would need 5 weeks of radio/chemo therapy, surgery and would have a temporary colostomy.  The report stated I had a large invasive mass in my lower rectum, suffice it to say I was shell shocked and very anxious.   

The CT scan had shown some suspicious lesions in the liver which were investigated prior to the start of radio/chemo therapy.  The chemo was taken orally;  three tablets morning and evening.  On the first day of ray treatment, I was given the bad news that I had 3 metastasis in the liver.   My case was discussed by the team and they decided that the cancer in the liver was operable and I would need to have further chemotherapy after the surgery.  I was facing a large operation on my rectum, having a temporary colostomy, major surgery on the liver then more chemotherapy and finally the reversal of the colostomy;   to say I was terrified is an understatement!  

I have now finished the radio/chemotherapy which wasn't as bad as I anticipated.   The radio oncologist said I had had a good response to the therapy and the tumor had shrunk by 60%,  however this information did not impress me as I was hoping for a complete response and that the tumor would have disappeared!     Last Thursday I saw the surgeon again to discuss the next stage of my treatment.   After performing a rectal examination, he informed me that the tumor was too close to the anus for him to get a decent margin and he would need to remove my rectum and anus to ensure a better result.   This means I will have a permanent colostomy.   The only positive in the scenario is that he can do the operation via key hole surgery which is much less invasive.  The surgery date is set for July 3.   

My immediate response was that I would rather have euthanasia than go through everything I was facing.  Unfortunately, euthanasia is not legal in Australia;  I also have two beautiful poodles who are totally dependent on me,   Although I have three adult children and 4 grandchildren the well being of my dogs are my greatest concern.  I am divorced and have no partner to help me go through all this.   

I discovered this site because I was searching for some new development in the treatment of this vile disease other than radical surgery.   

I wish you all the best in your journey,   

Love and Peace 

Rosella.   

Hi Rosella

I am 45 and have rectal/anal cancer and am facing same surgery as you except the tumour invaded my vagina so I am losing my uterus and they are having a plastic surgeon to work on reconstructing my vagina ...all this news in one day on Jan 23 ..I have had the colostomy surgery already since Feb and still have problems dealing with it. Just letting you know you are not alone in this! It does help to talk to people on this site. Keep us updated..Wish you well