Just diagnosed

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penny247

A Big Operation 😢

Hello everyone managed to sit with my brother today for a few hours, I managed to control my emotions (as I think I have no tears left to cry) he was telling me he was awake and saw the colonoscopy, he said I saw the tube go in and than it hit something he said I knew that was trouble. The doctors said quickly pull the tube out all looking concerned. He said when he came round from sedation the doctor told him it’s bowel cancer and where it is located and he will need a BIG operation and a stoma bag 😢 she said not too worry, how can you not? This Wednesday he has a meeting with a team to tell him the stage and when surgery is; I am so so worried as I intially thought a key hole surgery? And I read many don’t need a stoma bag but he’s been told he needs one.

Any similar stories like this, I pray so so so hard it’s just localized and early days. All I keep hearing it’s big, it’s blocking this and that surgery very soon,

He had a scan 1.5 years ago CT nothing turned up and bloods were ok, what baffles me is that in 1.5 years its bowel cancer? Can it grow in 1.5 years? Or was it too small the CT scan didn’t detect it.

I feel this is the calm before the storm. Wednesday is a huge day for the family and again I pray so so hard it’s not terminal 😢 I keep thinking of bowel babe and what happened to her. All your postive stories gives me the strength I need. It was lovely sitting laughing with him but at the back of my head the thoughts were hurting me:

Please please please please let it all be ok 🙏🏼

jotty

Hi Penny he sounds exactly like my diagnosis. I am 18 months down the line so have had the big op, chemo and radio sessions etc. Rather than me confuse you at this early stage please stay on the forum and update us all and we can give advice a stage at a time. It’s a long battle but he will be in good hands. Bowel babe had many other complications that he is unlikely to get if that helps

Mark McC

Hi @penny247

The waiting is the absolute worst time, with anxiety and your mind in overdrive. I was diagnosed with a stage 3 tumour Nov 2020, 7 rounds of chemo, 2 ops, stoma for 8 months. My recent check up said there’s no evidence of cancer.

Be prepared with a List of questions and contact details for support groups and the hospital support team.

www.macmillan.org.uk/...is/questions-about-your-diagnosis

www.bowelcanceruk.org.uk/...ancer/diagnosis/questions-to-ask/

Stay strong and good luck Wednesday .

Lirio345

Good morning @penny247, as others have said, this is a very difficult time waiting for further tests, results and a treatment plan and bizarrely when the latter is in place, most people feel more in control.

I just wanted to say that the size of a tumour in the Bowel is not necessarily indicative of the severity of the disease, - a number of people on here have had large tumours removed but with no spread elsewhere. Everyone’s BC is very different, - I was diagnosed at stage 4 (spread to liver) over seven years ago and whilst I am on permanent chemo, I do live a near normal life.

Terminal is not a word used very often anymore in the world of cancer. Treatable but not curable is used these days (which is what I am). I totally understand the utter fear you are all feeling but ‘you don’t know until you know’ can be helpful to try to embrace until Wednesday.

I don’t know if anyone has suggested that you also join the private caregiver support group (see under list of topics), but I strongly recommend this as talking to other people in the same situation can be so helpful.

Take very good care, Kim :x::x:

Poppies

Hi @penny247, this really is the worst time. I tried to remind myself that my thoughts weren’t facts and keep in the present, not easy I know. I too was told I would need a stoma. I have had it 3 years nearly and it’s no trouble and saved my life. Take care P :x:

jotty

If he has been told he needs a stoma then like me it sounds like the tumour is at the opening of his bum hole, the muscle bit, and will need removing. That makes it impossible to control things normally hence the stoma. My experience is it’s now not a problem and like me he will be a fully paid up member of the Ken butt club.

Lirio345

Hi @jotty, at the risk of upsetting you, which is absolutely not my intention, I wanted to point out that stomas can be formed almost anywhere in the colon (colostomy) or ileum (ileostomy). It makes sense that the lower the tumour, the more likely a stoma will be needed but it does vary from one person to another. Take care, Kim :x::x:

jotty

No problem none of us are experts after all, but the lower the tumour the more likely the stoma is to be permanent. Hope that explains things from my perspective

Quote from @Lirio345:
Hi @jotty, at the risk of upsetting you, which is absolutely not my intention, I wanted to point out that stomas can be formed almost anywhere in the colon (colostomy) or ileum (ileostomy). It makes sense that the lower the tumour, the more likely a stoma will be needed but it does vary from one person to another. Take care, Kim

skyetripper

Hi @penny247 Sorry to hear about the diagnosis and like most folks on here I can sympathise entirely with the terrible uncertainty you’re going through. But as others have said, getting a treatment plan in place and speaking to the consultants does help to rationalise things for most people so 🤞🏻.

As for a stoma, I had an emergency op for a blockage 7 weeks ago and they gave me a stoma. To be honest, I’m not finding it particularly difficult to live with. There were leakage problems after the operation, but everything has settled down and changing and emptying is now second nature.

Everybody’s cancer is different and terminal is not a word I think should ever be used, and prognosis is never more than a guess. The medical teams are really ’joined up’, and they will undoubtedly give the best treatment currently available.

Take care and keep strong. Alan

bettyb1987

Hi @penny247 sorry to hear your family are going through this. As many have said above the size of the tumour isn't an indication of the stage. This is the worst period waiting and I can definitely attest that when you're in treatment or have the dates for surgeries etc you feel much more in control and that you're doing something to get better. I'm sure your brother will experience the same once he has some clarity.

I was diagnosed at 34 with stage 1 and I am very fortunate that I was caught early. I have just had a low anterior resection done by keyhole with a temporary stoma bag (ileostomy). I'm 6 weeks out now and fingers crossed am doing really well. It's major surgery but as my nurse put it (probably to alleviate my fears!) so is a c-section. I'm used to the stoma now and apart from the boredom of having to chew my food to a pulp it's been ok. I'm more than happy for you to message me if you have any questions.

I don't have experience of being on the carer side of things but I do know that my family have found this hard - particularly my boyfriend. I have tried to keep my emotions at bay and turn to this forum for support as I didn't want to upset them anymore by showing I was scared. Cancer can weirdly make you feel guilty for bestowing it upon others - at least that's how I felt.

We are a supportive bunch who want to help so please do keep us posted and we willl wrap a virtual arm around you!

All my best,
Betty :x::x::x:

penny247

Thank you all so much :x::x: I must understand the word big doesn’t mean it’s spread and it’s stage 4 😢that’s intrusive thoughts that consume me! and your correct I should eradicate the word terminal from my vocabulary it’s 2022 medicine has come a long way. I hope at Wednesdays meeting we get a surgery day in a few days. How long from being diagnosed did many of you have your surgery? I keep thinking we know there’s a big tumours why don’t we remove it now?! Why even have a chat remove it than we talk about the plan. I feel time is of the essence. We went for walk in the park today and he’s full of life laughter and warmth 🥺 a few times cramps made him stop to catch his breath, he’s 5’11 tall slim always plays football I mean today it broke my heart when he said why me? Don’t smoke don’t drink eat healthy why did this come in my tummy 😢 I said I promise you will be ok, and I promised a lovely holiday once it’s all sorted. I said after surgery your never going to have that tummy pain again he said all I want is a good nights sleep.

I asked if I can attend the meeting on Wednesday he said I can.

Just want to say how brave strong and amazing you all are, and I’m sure my brother will be on here few months down the line giving advice also ❤️ It’s just terrible and we’re all on edge. We just want to know the plan.

I find peace in this forum thanking each and everyone for their feedback and advice xoxoxo

Lizsa

Thinking of you and your brother for your appointment tomorrow. I had colonoscopy where tumour was found. Then mri and ct scans a few days later. Meeting with the surgeon was 2 weeks after colonoscopy where they gave results of scans and biopsies and then i was booked into surgery 11 days later. It was all very quick as they don't want to leave cancer. :x::x: