Scared of possibilities

Lissa78 · Oct 25, 2017

39 year old female with ongoing episodes of severe stabbing pain in lower right pelvis, tons of mucus, no appetite without weight loss, extreme fatigue, joint pain.
I have been suffering for over 9 years and had a hysterectomy due to this pain (found mild endometriosis) but the pain continued and I finally had a CT scan last month.
I have thickening in my sigmoid and inflammation in that area as well. Scheduled for a G.I appointment in a few weeks and surely a colonoscopy or sigmoid tests...
I'm scared because the doctor that ordered the CT said today at my follow-up it "may be cancer"... And now I'm going to stress and worry until I have the next test! Please any advice would be so helpful.
Lissa

Lizzie · Oct 25, 2017

I'm sorry that you are having such an anxious time. Lots of us on this forum have faced the same worry about cancer as the symptoms of serious IBD can be so similar - for example, my GP suspected cancer when I first got IBD and referred me for an urgent colonoscopy, and then a couple of years ago when I was terribly ill I had a CT scan for the same reason. Thankfully, neither turned out to be cancer, but I do know the stomach-churning fear you undergo, and you have to be a stronger person than me not to let it overwhelm you. I was totally obsessed with cancer, worrying endlessly who would look after my pets and my disabled husband etc etc. I remember obsessively reading vast amounts of research, can't recall the exact details, but I think it was something like one in eight or ten people referred for tests with suspected cancer actually turned out to have it, so the odds on not having it are more than reasonable.

The positive thing that came out of my initial cancer scare was that I became very productive, painting and decorating the house and doing loads of jobs I'd been putting off for years. I felt it was now or never, since I was convinced I was dying. I also appreciated life massively more than I had before, and I think that has continued despite or because of my trials and tribulations with IBD.

I think the only advice I can give really is to stay hopeful and try to take one day at a time. Hopefully it won't be the worst news.

Cross-stitch gal · Oct 26, 2017

I was diagnosed over 20 years ago and they constantly want me to get checked for cancer. In fact, I'm supposed to have a colonoscopy every 2 years now just to keep a watch. But, I know that if cancer is ever found for me I can come here for support. And, so could you. You've found a good place to come to. Just ask if you need us.

Lissa78 · Oct 26, 2017

Lizzie said:
I'm sorry that you are having such an anxious time. Lots of us on this forum have faced the same worry about cancer as the symptoms of serious IBD can be so similar - for example, my GP suspected cancer when I first got IBD and referred me for an urgent colonoscopy, and then a couple of years ago when I was terribly ill I had a CT scan for the same reason. Thankfully, neither turned out to be cancer, but I do know the stomach-churning fear you undergo, and you have to be a stronger person than me not to let it overwhelm you. I was totally obsessed with cancer, worrying endlessly who would look after my pets and my disabled husband etc etc. I remember obsessively reading vast amounts of research, can't recall the exact details, but I think it was something like one in eight or ten people referred for tests with suspected cancer actually turned out to have it, so the odds on not having it are more than reasonable.

The positive thing that came out of my initial cancer scare was that I became very productive, painting and decorating the house and doing loads of jobs I'd been putting off for years. I felt it was now or never, since I was convinced I was dying. I also appreciated life massively more than I had before, and I think that has continued despite or because of my trials and tribulations with IBD.

I think the only advice I can give really is to stay hopeful and try to take one day at a time. Hopefully it won't be the worst news.

Thank you for your reply, I am trying to block it out of my mind so I don't fall into deep depression. I just wish I could already know what it is. Your story is inspiring and I will remember your words.

Lissa78 · Oct 26, 2017

Cross-stitch gal said:
I was diagnosed over 20 years ago and they constantly want me to get checked for cancer. In fact, I'm supposed to have a colonoscopy every 2 years now just to keep a watch. But, I know that if cancer is ever found for me I can come here for support. And, so could you. You've found a good place to come to. Just ask if you need us.

Thank you so much, and I will become a regular here. It's wonderful to have sites like this where others experience the same type of paths.

ronroush7 · Oct 26, 2017

Sending support. The first time, I had bleeding from Crohn's I was afraid of cancer but it was an abscess.

Lissa78 · Nov 7, 2017

Update: Had my 1st G.I appointment today and got scheduled for a colonoscopy, and endoscopy for the 27th of Nov....bizarre thing is my pain is on the opposite side of what showed on CT, is this common???
Thanks

CallieS · Nov 8, 2017

Lissa78 said:
Update: Had my 1st G.I appointment today and got scheduled for a colonoscopy, and endoscopy for the 27th of Nov....bizarre thing is my pain is on the opposite side of what showed on CT, is this common???
Thanks

I also had pain in an area that didn't show inflammation. And no pain in the area that did have inflammation. Go figure. I had two doctors say that was understandable because in my case, I have a stricture, and they said the pain could happen at any point before the stricture.

Lissa78 · Nov 8, 2017

CallieS said:
I also had pain in an area that didn't show inflammation. And no pain in the area that did have inflammation. Go figure. I had two doctors say that was understandable because in my case, I have a stricture, and they said the pain could happen at any point before the stricture.

Thanks for your reply! I thought no one was going to answer lol. Yeah I couldn't understand the the pain being in a different area but after thinking about it maybe all inflammation doesn't show up on CT or something...guess the scope will be more telling, maybe thats why he's doing a upper and lower in case there's way more inflammation than the CT revealed. Ill keep updating.

Guerrero · Nov 8, 2017

Most doctors don't know how to relate to patients...
Maybe sometimes they think patients will underestimate there comments so they extrapolate it to the worst case scenario to get attention, but the results is more stress and anxiety and worst outcome to treat the patients.

Your symptoms look like IBD, and he suggested cancer while it seems to be the less likely but the worst pathology it may be. That's very stupid.

Scared of possibilities

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