Low Rectal Cancer Diagnosis - newbie on here

Former Member over 8 years ago

352 replies
114 subscribers
492382 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

court over 5 years ago in reply to AnnieMC50

No I don’t AnnieMC50

She had a lot of sadness last year . I think if her often too . I hope she is well . I will try tagging her in .

I think that’s the right tag .

Take care ,

Court

Helpline Number 0808 808 0000

court over 5 years ago in reply to KevH

KevH

And you too ! Another lovely addition. So great to hear your scans are getting pushed out too ! Mum actually had her first year scan in 11 years . That’s the longest she has ever achieved. Normally every six months . It is such good news and a great sign .

We are in a right old Covid mess right up and down the country . I have really limited what I do and where I go . Lots of walking and chatting from a distance . Amazing how we have adjusted really .

This has really brightened my night .

Good to see you all on !

Court

Helpline Number 0808 808 0000

Former Member over 5 years ago in reply to Former Member

I’m so glad to see you mentioning Lynch. My dad died at 32 in 1977 and my brother has just been diagnosed with rectal aged 49. We are all being screened now x

HRC over 5 years ago in reply to KevH

Hello Kev, Court and Annie

So lovely to receive a response from you all after all this time and I’m so pleased all is well although somewhat difficult with the challenges of Covid! I don’t think you ever forget people like you - who were there when you were feeling so desperate and in need of advice! It’s been great to hear how you have all been getting on. This is such a common situation and incidentally my husband is taking his friend for an investigation tomorrow as he has been bleeding, but hopefully all will be well!

Take care and stay safe!

Hannah

HRC over 5 years ago in reply to court

Bless your mum, she sounds amazing! So precious and also so lucky to have you!

Hannah X

court over 5 years ago in reply to Former Member

So glad you are all getting screened . There has been a lot of work done on Lynch syndrome over the years and I believe bowel tumours in England are supposed to be Tested . Not sure how that aspect is going but I think it’s something we should all keep in our minds . Good screening is such a life saver .

How is your brother getting on ? All the best with your screening .

Court

Helpline Number 0808 808 0000

court over 5 years ago in reply to HRC

Oh thank you Hannah ! She is doing her best for sure .
I think you are right . I can still tell you the names of the people who were on the site when I joined all those years ago . They helped me support mum in a better way as they reached out and supported me . I don’t even do Facebook etc ! So I never imagined it was possible to go online and find that support .

Glad you are doing well too!

take special care ,

Court

Helpline Number 0808 808 0000

KevH over 5 years ago in reply to HRC

Hi Hannah,

Good to hear from you again. In respect of your husband’s friend sometimes the bleeding can just be piles. I have had them in the past that started bleeding there not always the ones that hang down out of the bum some can just be inside. I had an operation many years ago to remove them.

Hopefully your husband’s friend finds that it’s something minor like that. It’s quite a common problem.

To update on where I am, I had a CT scan yesterday but the results from that won’t be ready in time for my telephone appointment with Professor Myint tomorrow but I am not expecting to hear anything sinister back from that. As my recent MRI showed no reoccurrence. So I am expecting my appointments will get more spaced out from now. But I’ll keep you all posted when I know anything.

Kind Regards

Kevh xxx

KevH over 5 years ago in reply to court

Hello Everyone,

Just an update on where I am at. Had my CT scan on Tuesday. Too early to say what the results from that will be but I am not expecting anything sinister.

My telephone appointment with Professor Myint ended up being Saturday morning and we discussed my last MRI and Sigmoidoscopy which both showed no reoccurrence. He said that I would have one more set of scans hopefully in March and if they showed no reoccurrence that would be it for them. As they don’t usually do them again after 3 years. He said that the chances of it coming back now is less than 10% and the longer it goes on the percentage of it coming back reduces.

So far as endoscopies or flexible sigmoidoscopies then I would have them every 6 months but if I picked it up right once we get to 5 Years from treatment commencing then they would stop too.

My appointments with Professor Myint are going to be spaced out to yearly. So it’s sounding promising as it sounds like the first 2 years is critical then after that it’s a diminishing chance it would come back.

So I have no further appointments now till March which would be the scans and if there all clear then I’ll go see Professor Myint in September. Provided we have got to grips with the Pandemic we are all having to face at the moment.

I have started to do my bio on here should you wish to look me up albeit I will have to fill the back end of it with greater detail as my fingers got tired on my little phone that I access here with.

Keep Safe, keep your spirits up

KevH xx

KevH over 5 years ago in reply to KevH

Correction I am losing track of my days my Telephone appointment with Professor Myint was Friday morning not Saturday morning. I don’t know where that came from lol

KevH xx