Low Rectal Cancer Diagnosis - newbie on here

Former Member over 8 years ago

352 replies
114 subscribers
492394 views

Hi everyone,

Well I think I’m ready to post on here now. Here’s my story so far...

Bleeding, lumps and discomfort last summer so went to see the doctor, he said (without any exam- just a little look) it’s haemorrhoids, gave me suppositories and off I went, no improvement, went back, given more suppositories, still no change so eventually he referred me routinely to hospital for treatment, this was in November. January I’d still not heard from the hospital so rang up and found waiting time to be 9 months.

Had a niggle in the back of mind that I couldn’t shift (based on the blood colour) so decided to go private for a consultation to put my mind at rest, the best £150 I’ve ever spent, had a digital exam and a rigid sigmoidoscopy to be told it was not haemorrhoids but a malignant tumour.

He said it was probably about an inch, likely to have been there for a couple of years but couldn’t tell if it was rectal or anal at that point.

This was only a week ago, I was referred back to NHS with the same consultant as he saw I was self funded.

Had a colonoscopy yesterday which confirmed a low rectal tumour but rest of the bowel was fine. Phew!

I’m thinking that if it’s not spread to anywhere else in the bowel then it’s unlikely to have spread anywhere else (hope my rationale is right!)

I’ve got a CT scan this Thursday, an MRI next Sunday then my consultant appointment for all of the results is 2nd March in the afternoon.

Husband and family have been amazing, although I think they’ve taken it worse than me! I told my 4 children (12,13,18 and 19) I was very open and honest but was very careful not to scare them.

I just want to know the extent of everything now, and start fighting this thing, the consultant originally said it would likely be radiotherapy and surgery.

Being only 42, I never thought this was even likely so it has been a rollercoaster of emotions but I’m feeling very positive!

Anyone else have a similar story? Would be interested to hear from you!

Thanks

Lisa

AnnieMC50 over 7 years ago in reply to KevH

Hi Kev, I start my radio chemo on 25th.. having a bit of burning pain and like a swollen bruised feeling. I'm hoping the radio chemo will make this feel better not worse ? How is your Papillon going ? Hope well.

Besr Annie xxx

AnnieMC50 over 7 years ago in reply to KevH

Hi Kev

Hope you are ok ? Just a bit confused do you have the papillon boost (if you are suitable) before or after the 5 week chemo radiation ? Xzzz

AnnieMC50 over 7 years ago in reply to Former Member

Hi Ghas ..

hipe you are doing ok ? I start my chemo radiotherapy tomorrow at christies.. for 5 weeks .. it is all surreal as I feel and look so well ? Is that how everyone feels .. just wondered why you didn't feel Papillon was for you ? many thanks for any insights xxxx Annie

KevH over 7 years ago in reply to HRC

Hi Hannah,

sorry to hear your news hopefully someone on here will be able to help you with what must be a distressing time. My thoughts and prayers are with you.

My Papillon is progressing well I had my second dose by the time we get to this Thursday 2 weeks ago. The pictures pre first dose and pre second dose showed a good response. The pre first dose showed the tumour area looked very red and the Professor asked me if if I was taking aspirin at the first dose day. Which I responded with me saying no I might take some anadin if I have a headache. I never asked why he had asked that at the time but I got to ask him after the second dose. He said I was bleeding whilst he was up there with the machine whereas the second time I wasn’t. Anyway the pre second dose pictures showed the tumour area was quite pink with some air line red lines running through which the Professor says is the tumour. But what a difference after 1 treatment.

I have my 3rd dose this Thursday so we should be able to see what effect the second dose has had. This should be my final dose and then it will be a case of regular MRI and CT scans. Kicking off with an MRI Scan beginning September and an endoscopy end of October then an MRI and CT scan In December.

I have since that was set out got an appointment with the Professor middle of September for him to review the MRI scan and put the camera in to look at the Tumour area.

So it’s looking promising so far the Professor said if the tumour does come back then it’s likely to be in the first 2 year’s and if it does then I’ll have to consider surgery then.

Keep me posted Hannah on your mother’s journey love to you both x

Kevin

KevH over 7 years ago in reply to AnnieMC50

Hi Annie you might have that feeling for the duration do mention it to the Radiotherapy nurses to see if they can give you something to ease your symptoms.

Kind Regards

Kevh

KevH over 7 years ago in reply to AnnieMC50

Hi Annie I think it might depend on the size of the Tumour. In my case I had 5 weeks of Chemotherapy and Radiotherapy and about 6 weeks gap before starting Papillon. Some I think have had the Papillon first and then gone on a course of Chemotherapy.

Kind Regards

KevH

AnnieMC50 over 7 years ago in reply to KevH

Thanks Kev,

for the insights on radiotherapy .. I was hoping if it shrinks during the Radio that might ease it but prob wishful thinking. Did your oncologist support you going to papillon after chemo rad ? .. thanks Kev xxxx

AnnieMC50 over 7 years ago in reply to AnnieMC50

Hi Kev

just another question. Did they rescan you before you started papillon ? You said it started about 6 weeks after chemo rad ? Just rwobdered how they knew the size abd results from original 5 weeks Chemo/radio? As christies say they want 3 months to see response after radio ?

Thsnks Kev, sorry so many questions !

best Annie xxxx

KevH over 7 years ago in reply to AnnieMC50

Hi Annie,

I had the same question as you. Professor Myint rang me a few days after I had finished my Chemotherapy and Radiotherapy and I asked him the same question as you and after a discussion he asked me to arrange a fresh MRI scan locally which I then contacted the nurse and arranged for it to be done a couple of weeks before I was due to have my first Papillon treatment. I thought that was best to give me more time to recover but not too close to the appointment that the images weren’t available for Professor Myint to review.

Within the Papillon Treatment machine there is also a camera too which they can see the tumour too or what’s left of it when they place it inside you.

3 months sounds a long wait are you having Papillon treatment? I know they say that The Radiotherapy continues working for a while after the completion of treatment but my local oncologist said 6 weeks gap was about right.

Kind Regards

Kevh

KevH over 7 years ago in reply to AnnieMC50

Hi Annie,

He did support me but pointed out that it wasn’t the Gold Standard and the risks. I had to do the research first and say that’s what I wanted to pursue it. I had a short time frame to do this research got the diagnosis on a Thursday and had to go back in on the Tuesday for the gory details. In between that time I enrolled on here and that’s where I found out about Papillon through chatting with Catherine.

So I was armed with my questions on the Tuesday and the answers that I was given seemed to be fitting into the parameters of a look at Papillon so that’s what I told the Oncologist that’s what I wanted to persue.

kind Regards

KevH