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Original poster

Bowel cancer- a cautionary tale

48 replies

tallulah · 05/03/2011 16:37

This week I have been dx with bowel cancer following a CT Scan. I have been seeing the GP monthly since July (3 different ones) because of having to go to the loo 10+ times a day, and up till now they have been convinced it was IBS.

The only symptom has been the excessive toilet visits. No bloating, no pain and no bleeding. I have had 3 blood tests and been told that "if it was something serious it would show up in the bloods". But it didn't.

I am not in the "at risk" age group (55+). I have never smoked and rarely drink. I haven't eaten meat for 30 years. I have fruit and veg every day.

I would say to anyone who has a change in bowel habits , don't wait for symptoms, or be fobbed off with "it won't be anything serious". Ask for a referral.

OP posts:
chelle6 · 05/10/2011 16:10

I am being treated for bowel cancer now and am 7 months pregnant, I'm only 35 and very fit and healthy, or so I thought. Though, after being diagnosed, I found out my Aunt had it when she was my age. Have had surgery and am getting chemo which I am not comfortable with, being pregnant. Don't know half the time if my emotions are to do with being sick or pregnant.

Where are you now with your treatment, have you had chemo/ radiation?

BurningBridges · 05/10/2011 16:35

I'm on a thread with Lisad and some others at the moment on the theme of getting fobbed off, ISB type symptoms etc., I've been told it can't be cancer as I don't look ill, haven't lost enough weight (only a stone), and am not in enough pain, even though most cancers are painless until they become untreatable. I too was getting up in the night twice to poo, was also going 4 or 5 times a day, and thought nothing of it. I've got an ultrasound booked on 31st october, now thinking I should have said more about the bowel thing.

A friend gave me a good tip recently for dealing with doctors - I was going in with a list of symptoms all neatly typed for them, she said go in, tell them your symptoms one by one and ask them to explain them - e.g., WHY am I losing weight, WHY are my bowel habits different etc. This is my next plan of action.

MegGriffin · 05/10/2011 19:05

Hi tallulah. So sorry to hear your news. I am glad they are now treating you quickly.
I am on the waiting list for a flexible sigmoidoscopy (after having symptoms) which although will not be pleasant I know is a good way of testing for cancer.

lisa, I can't believe they have not referred you!

BurningBridges · 05/10/2011 19:27

BTW, big support out to all of you, Tallulah, Chelle6, who are being incredibly brave about this - I am in awe of you.

chelle6 · 06/10/2011 20:55

Sigmoidoscopy is not pleasant at all but a necessary evil. Because I'm pregnant, they rushed me through waiting lists as cancer would spread quickly in the second trimester. Got results and had surgery within about two/three weeks of test. It's amazing that although you get given the worst news conceivable, you just get on with it. I was a lot more positive about it then my friends and family who took the news a lot worse then me. If you are otherwise fit and healthy, you should get through surgery and chemo relatively okay.

twankie · 06/10/2011 21:37

I hope you don't mind m asking but are there other symptoms apart from an increased frequesncy of poo-ing? Why would it cause that anyway?

chelle6 · 06/10/2011 22:03

Blood when you go to the toilet, cramps and indigestion. Blood was my main symptom more then frequency of toilet. Also, if you are young, there's a good chance it's genetic. Nothing to do with diet and fitness.

Abra1d · 06/10/2011 22:10

My motherer had it at forty. She was slim and fit and a non smoker and ate masses of fruit and veg. She had about a foot of colon removed. Her GP didn't take her symptoms seriously. She was a nurse and knew something was wrong.

She is 73 now. :)

I have colonoscopies every five years, for which I am grateful.

Best of luck, Tallulah. Treatment is much, much better than it was back then.

reallyfuckingscared · 06/10/2011 22:18

This thread is so encouraging to read. I am awaiting sigmoidoscopy and very worried (family history) but I'm trying hard to buck up and get on with things and hearing from you brave and experienced people is so good. Wishing you all good health.

Original poster
tallulah · 06/10/2011 22:32

I was quite surprised to see my old thread pop up in active convos Grin

Chemo is over (thank god) and I've got a follow-up scan on 17 Nov.

Burningbridges the doctors kept telling me it was nothing serious, because i have no family history, hadn't lost weight and nothing showed up in my blood tests. 2 GPs have now apologised to me for getting it so wrong.

OP posts:
triplets · 07/10/2011 01:21

Can I pop in? Just seen this abd wanted to share our story with you. My dh was diagnosed with bowel cancer in Feb 08, it had already spread to his liver so stage 4. To skip 3 years he has had lots of chemo and lots of surgery, the last op being in Jan this year to remove a tumour in his lung, new spread. Today he went for a ct scan result..............all clear! So he has had no chemo since Sept 2010, and no surgery since Jan. He has throughout always been positive that this evil beast will not beat him, its standing him in good stead!

twankie · 07/10/2011 06:02

oh triplets..that is fab!

BurningBridges · 07/10/2011 09:38

I do keep hearing good things about bowel cancer being beaten - I hadn't realised this was an old thread, but good news from Tallulah. How are you feeling now Chelle6?

Does anyone have an opinion on/experience of the poo by post Grin testing kits mentioned by beeaware above? They seem to be the same as the NHS monitoring kits for over 60s. Any thoughts? Good idea?

Abra1d · 07/10/2011 10:38

I had one of these done in Feb. as part of a health check-up. It came up clear but I will still be going for a colonoscopy. I'm not sure they are quite as definite as a colonoscopy? But perhaps a medic can enlighten us?

Bugsy2 · 07/10/2011 10:42

Thanks for highlighting this & very, very best wishes for a successful op.

Original poster
tallulah · 07/10/2011 17:39

triplets, excellent news Grin

OP posts:
chelle6 · 07/10/2011 19:19

I was searching for people with the same experience as me. I kept hearing about people's parents/ older relations who had it and all the leaflets and information were all aimed at people over 55. So wanted to find people around the same age as me. Tallulah, do you have to use alternative toilet method. I found this more troubling to come to terms with and still do. Chemo itself is going fine and am half way through it already. Didn't lose my hair though not sure if this is to do with being pregnant.

Original poster
tallulah · 07/10/2011 22:05

chelle do you mean a stoma? Thet warned me I'd probably have one and I had to practise with the kit before the op, but as it turned out I didn't get one. With the way the chemo made me feel, that would have been the last straw.

I was invited to an info morning at the hospital for people who'd had bowel cancer. There were only 3 of us under 70, and most of the others were men. Didn't make me feel any better.

My hair has been falling out in handfuls for the last few months :(

OP posts:
shitmagnet · 07/10/2011 23:22

This reply has been deleted

Message withdrawn at poster's request.

chelle6 · 08/10/2011 20:22

Yeah, the stoma. It's horrible. Well, I'm getting used to it. And they said it might be reversed in two years time after the baby is born. But, I hate it and it's getting more painful as the baby bump gets bigger, pressing against it.
The information leaflet had suggestions for what clothes to wear to hide it - an older woman in a pair of brown slacks and cardie - not really my style!!

That's a pity about your hair. I try not to get complacent about it, I expect to lose some after the baby is born.

GlamAndSpan · 10/10/2011 14:22

Hi chelle6, have you heard about irrigation? I'm not sure it's suitable when pregnant. I irrigate my stoma every morning and always have an empty bag. It means I can wear normal clothes. I feel so much better about it. My stoma is permanent so I have to deal with it.

Before I did this, or if for some reason I can't irrigate, I mostly wore trousers with a waistband under my stoma and tunics over the top. Dresses can be quite good, as long as you find ones which do not fit closely over the bag area. It does often mean wearing slightly looser clothes than you might otherwise but you don't have to wear slacks and a cardie!

White Stuff always has tunics in. Other than that, you need to check the length of the top to be sure it will clear a full bag. And a slight flare at that point is always helpful - straight dresses can very easily look very strange. Floppy wrap cardigans of various shapes can be quite good. If you fill a bag when you are out you can casually wrap it round you as you make your way to the loo.

If you are absolutely sure you are not going to fill your bag, you can always wear some shaping shorts under a dress to smooth away the line of the bag.

chelle6 · 10/10/2011 21:11

I have heard about irrigation but I think I have to wait til after the baby and then will look into it. It sounds like it would make life easier especially for work and social events. It seems to know when I'm in a social situation!! I'm probably a bit paranoid about it anyway.

Thanks for the tip on clothes, I'm the size of a house at the moment so hopefully the bump itself is doing a good disguise.

Do you find a problem with travelling long distances?

GlamAndSpan · 10/10/2011 22:18

No problem from my stoma but my bum can get sore.
But I don't really travel long long distances for holidays as it is not, so to speak, my "bag".

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