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Worried about bowel cancer

23 Aug 2019 11:43

Hi there.

I previously posted on the forum, as I was having regular flair ups since late last year every couple of months. My diet wasn't great, however I never had problems until last year. The flair ups would start with bad indigestion, constipation but wanting to empty bowels, then going to toilet a few times until the indigestion went. It would then be like a release and I felt better once I was sick, and had got the stools out. I felt sick, bit shivery and weak, and at the end it would turn into diarreah. These flair ups would last a day at atime, but the last flair up was around 4 days long and really bad in May time. Generally after the flair ups I'd go back to normal, but since the last flair up I have been pretty bad. I've had a sharp pain on the right side above my navel, and sharp pains on the right abdomen, it started like a nigglling pain but they're so much worse now, it's really sharp at times and more dull at other times. I've also been having terrible acid refluxindigestion last couple of months, andwith a sore tummy when I need to emply bowels, it'susually in the morning time.last couple of months, so I'm on Lansoprazole for that but last week I'm getting it much worse. It seems to be worse, in the morning when I need to go toilet but then I go, the indigestion and tummy gradually gets a bit better. I already have IBS, had it for a few yearsbut never expreinced this. It'shorrible when it comes on. The sharp pains are worrting me too, I only get them on the right handside and it's so sharp and noticable, I can't get on with my day without feeling them. It starts on bottom right hand side of navel, and goes all up my right abdomen, to under my breast bone. It's so hard to explain, and no one I've seen has these types of symptoms. I've also since april, been getting the smallest bit of blood in stool on approx, 5 occasions. It's barely noticble but I have been looking. The first time was in April, and I was so scared - it was like a maroon red color, but so small. Last time Inoticed was about a week ago, and again was tiny. I had bloods done a couple of months ago, and my CA125 was raised to 45, so I went for ultrasound and all came back normal, so I was so happy about that. Had another blood done a couple of weeks after and it went down to 41, so it's still over the threshold but the Dr is not concerned nowin that area. Idid have high placelets on my first FBC test -after my last flair up, but then they went back down to normal, so they weren't worried in the end aboutthat either. The Dr is saying it's now my gut/stomach so I'm having endescopy/colonoscopy 11th Sept. I feel like I've been waiting for so long to get to this point. I just want to know if anyone else had experienced what I've expereinced, or even a little of it. Or if any one has any ideas of what it could be? I find it so hard to explain my symptoms but it's affecting my daily life. I've changed al my diet, and I've eaten healthy for last three months. I am overweight, so it's good to lose the weight but I even worry that I'm losing weight quickly, even though my diets so much healthier now than it was. I don't eat fatty foods, drink alchohol etc.

Worried about bowel cancer

23 Aug 2019 11:45 in response to nica00

Oh yes, also jutto note - I was checked for gallstones too via ultrasound, and my liver, gallbladder, pancreas, bile duct and spleen were all showing as normal on it.

Worried about bowel cancer

27 Aug 2019 12:26 in response to nica00

just bumping the post as not sure if this post has been seen. I’d really appreciate if someone could share thoughts Happy

Worried about bowel cancer

27 Aug 2019 13:32 in response to nica00

Hi Nica00

I'm sorry to hear about the health issues that you've been dealing with since the end of last year. I can see from this, and previous posts, that you've been feeling anxious about what the cause of this all may be. 

It's reassuring that all your ultrasound and all bloods have all been normal apart from your slightly raised CA125. Your GP sounds as if they're taking your concerns seriously by referring you for an endoscopy/colonoscopy. I know that it feels like this has all taken such a long time but your appointment is now only 2 weeks away and hopefully it will shed some light on things. 

You mention that you find it difficult to explain your symptoms. Prehaps you might find it easier to write down how things affect your daily life so that you're able to show this to your Dr at your appointment. 

I hope that things start to improve for you soon. 

Best wishes, 
Cancer Chat moderator

Worried about bowel cancer

27 Aug 2019 13:38 in response to Moderator Jenn

thanks so much for your reply. You may not know the answer to this, but from your experience from this forum have you ever seen a link with people with higher CA125 and vowel problems or is it only gynocoligical problems? It seems odd that the CA125 is raised twice but my pelvis area is fine. And also if higher placelets for short anount of time is an indicator of inflammatory bowel conditions 

Worried about bowel cancer

27 Aug 2019 13:47 in response to nica00

Hi Nica00, 

CA125 results can rise for many reasons including endometriosis, menstruation, ovarian cysts, and sometimes ovarian cancer. This is one reason why it cannot accurately be used as a screening test for ovarian cancer. 

If you'd like to speak to someone then you could give our team of nurses a call on 0808 800 4040. They're available Monday to friday 9am to 5pm.

Best wishes, 
Cancer Chat moderator

Worried about bowel cancer

27 Aug 2019 14:02 in response to nica00


Sorry you are going through all this, it's so worrying until a reason for the pain is found.

I have had bowel cancer twice in the past 5 years and as we speak I am waiting for a call from my specialist nurses about a new pain/discomfort.

In my experience a colonoscopy and CT are the 2 main tests to detect bowel cancer, found mine both times. The 'stool' sample test I don't trust as both times I had cancer they came back ok! On the other hand I have met people whose bowel cancer was found by this randomly at age 60 when everyone gets sent a test.

You know your own body, don't give up pushing the Dr's for an answer. The blood wants investigating too, are you anaemic because of this?

I hope you get the answers soon, the anxiety of not getting answers is awful, I am going through lot's of it at the moment, we always imagine the worst.

Top tip..... don't look things up on the internet... we all do it and every symptom has a cancer answer that we tend to stick with rather than all the other possibilities. x

Worried about bowel cancer

27 Aug 2019 14:16 in response to Ineedabreak

Hi there, thanks so much for replying to me - I appreciate that more than you know. I’m so anxious, I’m trying to keep off the internet but it’s hard cause I do get comfort from it in a way but I know it’s not healthy being online all the time. I’m really sorry to hear about your cancers, do you mind me asking what your initial symptoms were? It’s a tough one with me cause my platelets were high for a couple of weeks and went back to normal soon after. I’m not anemic,not diabetic, not celiac etc - haven’t been checked for Inflammatory bowel disease tho, it’s hard to add the dots together. The main worry is the pain on right hand side it’s so sharp and painful and the indigestion tummy ache and chest pain. I hate being in limbo but I understand the surgery is best way to find out more, so worried tho. How are you feeling at the moment?

Worried about bowel cancer

27 Aug 2019 15:16 in response to nica00

So, I'll try keep this as short as I can....

I was being told for 18 months that I had IBS by 6 Drs in that time. (I since moved GP practice).

Symptoms were indegestion and you know the ibs tv ad where there's the knotting pain, that. Low ferratin levels so on iron tablets. Then one day I got a pain in my side/front, thought it was appendict so went to A&E, pain here is usually gall stones they said, had an ultrasound but gall bladder was ok so they admitted me for more tests and it was found by CT that I had a mass in my bowel, could have been a number of things so had colonoscopy and it was confirmed.

Second time 3 years later.... I started having discomfort around the area where small/large bowel was joined after first op. Iron levels dropped, no indegestion this time, marroon coloured soft poo.

It had come back on the joining so more surgery followed by chemo.

My specialist nurse just rang me back, my CT in june was fine and so was my colonoscopy/biopsy 3 weeks ago. Good news but no explanation for the new issue. So still some worry but I won't stop until I have an answer for it.

I found both times anaemia was a big part, my gp said I must be bleeding somewhere for iron to keep dropping as soon as I stopped the iron tablets.

Hope that helped a little, good luck and try not to worry too much. (says me........ the worst worrier ever...)

Worried about bowel cancer

27 Aug 2019 15:54 in response to Ineedabreak

when you were saying about your initial symptoms first time around it sounds like me with the indigestion and I get a tummy middle pain when indigestion comes on and then if goes. Did your indigestion come and go the first time around? The pains I get on my side sound also familiar as they initially thought I had gallstones but it was clear, I get sharp pain on top and bottom right, was it like a stabbing pain for you? Yeah my stools were like a maroon colour- did you get much ? Mine were very small bits. Only thing I can say is I don’t have anemia. I really hope all goes well for you, are any of the symptoms similar to the other two times. Have you got it checked out yet? 

Worried about bowel cancer

27 Aug 2019 17:07 in response to nica00

Indigestion as I remember was very often, got really bad. Also I felt bloated both times. The middle pain used to come and go quite quickly and for a few seconds was really bad but then eased until the next time.

Sorry I can't remember if you said if you had a colonoscopy? If not I would push for one soon. That way you will know one way or the other. I don't want to worry you but if it is anything the sooner it's found the easier to treat.

Every morning when I got up I had to go straight to the loo, as if it was there waiting.

The bad pain in my side went while I was in hospital, so glad I didn't just think whatever it was had gone.I remember the pain in my side being so bad I had to press on it.

i have a Dr's appointment tomorrow, not my usual Dr who has been through everything second time round but I booked one with her for next week in case I need it.

One thing I have learn't is you have to do alot of the work yourself to get to the people you need to see. Keep pestering and colonoscopy will find anything.

Worried about bowel cancer

27 Aug 2019 22:18 in response to Ineedabreak

ah I hope your Dr appt goes well tomorrow. Yeah Iv been pushing for a few months now,got an endoscopy and colonoscopy on September 11th. Thanks for your messages, it’s nice to have different take on it all.