Writing out my Fears

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Hi All,

After feeling a bit stronger each day for the first couple of days I'm having a real low and struggling to control my thoughts and fears. I've taken some strength from messages from people on here so thought I'd spell out my worries and try and get them out of my head.

So they found the tumour on Monday and the words that keep bouncing around my head are "it's quite large" and "it's probably been there for some time given how these things grow". I think back to some indigestion bowel trouble I had last year (with a little blood on poop) and keep going over the 'what ifs', I was treated for the indigestion and it went away, but the doctor who did my colonoscopy thought the tumour would probably have been there then. This all feels like the opposite of catching it early.

More recently over the last few months I've had some mild(ish) discomfort in my lower back on the left, just where the tumour is. I thought it was muscular given the way my desk is set up, but the diagnosis changed all that. It seems to be worst when I sit down, and I'm freaking out that it means the cancer has spread to my back / abdomen. It doesn't help that the stress means my back feels tight anyway now. The nurse I spoke to from the colo-rectal unit (who was great) said the pain didn't raise any red flags for her (but that she obviously hadn't seen the CT so couldn't comment on spread), but I'm now fixating on the fact I didn't tell her it got worse when I was sitting and still felt muscular at times. It's also seemed worse since the colonoscopy / diagnosis.

GP has previously reassured me that my bloods didn't show any sign of inflammation (apparently a sign of spread) and liver function etc was all normal, but now every twinge and gripe in my body feel like a sign of cancer popping up somewhere else.

The main thing I'm worried about is the spread to my back/abdomen and hearing the dreaded "there is nothing we can do".

Sorry for the bleak post, but sometimes it helps to get it all out. My meeting to hear the prognosis is on the 30th January, which feels a long way away now.

Rich

Rac over 1 year ago

Hello and welcome,

I had a large, 10 by 8 cm, tumour removed from my caecum in November. I didn’t have any obvious symptoms apart from the odd pain now and then. When I received my staging I was told that the tumour could have been there up to 10 years! Please do not stress about it, there isn’t anything you can do to change what’s happening. My tumour was fully removed with 2 out of 24 lymph nodes being affected. I started adjuvant chemotherapy last Friday and will receive 4 rounds.

please ask if you have any questions.

Rachael x

RichN over 1 year ago in reply to Rac

Thanks Rachel, really appreciate the support - hope the rest of your treatment goes well, wishing you all the best.

court over 1 year ago

Hi RichN

I can understand why your nurse said it was not raising red flags with her .
I have been here for over a decade and definitely don’t hear a lot about a spread to the bones with bowel cancer . It is inclined to follow a pattern of spread and rarely hear about it in the bones .

Hope your back pain gets better though and some people do report back pain as part of the diagnostic process but it does not necessarily mean a spread .
Hope it helps and you get some help .

Take care ,

Court

Helpline Number 0808 808 0000

Katz51 over 1 year ago

Hi.I had really bad back and leg pain prior to my diagnosis.It all cleared after treatment and was nothing to do with the cancer spreading.Presume something was pressing on a nerve.

Hoping yours is the same.

Ksth

RichN over 1 year ago in reply to Katz51

Thanks - that’s reassuring to hear. Really appreciate the support.

Katz51 over 1 year ago in reply to RichN

Do ask anything on here.everyone has a different experiance so always someone to try to help.also if you click on user names you can read about peoples experiances

All the best.the waiting is the worst but you can get through this

Kath

Maninbath over 1 year ago

Hi RichN,

I’ve said this in a few posts and in the knowledge that it is easier said than done but try to focus on the knowns rather than the unknowns. I too have quite a lot of lower back pain. I know my bowel cancer has spread to remote lymph nodes along my renal artery, which, I believe, is more towards the back of my body than the front. I also know I have a (unrelated) spinal cord compression about halfway down my spine. My unknown is: is it one or both causing my back pain and, if one, which one? As I don’t currently know I have, weirdly, decided that they ‘cancel‘ one another out and that helps me from dwelling on the cause of my back pain.

Appreciate I may be a bit strange in my outlook but thought I’d pass along how I’ve dealt with this particular unknown.

kind regards.

Maninbath

RichN over 1 year ago in reply to Maninbath

Thanks Maninbath (sounds like you’re not a million miles away from where I am in the Cotswolds). Best wishes.

Rich

RichN over 1 year ago in reply to court

Thanks court - that helps. For me it's more a concern that its spread to the muscle/back/abdominal wall... but I don't even know if that's a thing that happens. It's tough having such massive news and so little information or understanding, but the support here really does help.

court over 1 year ago in reply to RichN

Sometimes people here have had treatment before surgery and shrink things down a bit and get better surgical margins . Often people start at one staging and that can change before surgery .

My mum had chemo and her tumours shrank significantly.

They have various approaches to give the best overall outcome and get the necessary margins .

Some tumours become invasive but that can shrink if the person is responsive to treatment .

Hope that helps .

Court

Helpline Number 0808 808 0000