Recently diagnosed Bowel cancer at 34

Hi,

welcome to the forums and sorry to hear about the recent diagnosis. Most people here have been on the same emotional rollercoaster you’re on right now and so can empathise. 

if it helps I’m 38 and was diagnosed in October last year. You can click on my profile for more details. There are people on here with much more experience than me but I’d say that I’ve found my medical team to be great at the actual medical but but awful at the administration and organisation of everything. No individual’s fault but they’re underfunded and overstretched so can our effort/money into admin or treatment but not both. If you’re not getting what you want don’t be shy about asking and pushing for what you’re entitled to. Others might have links but for example there are clear guidelines about how long you should wait between diagnosis starting treatment.

have you been in touch with your CNS? They’re normally a great first point of contact. Call them. Tell them how you fee and ask what’s happening next? 

that’s all the practical stuff. Emotionally, I think most ppl here would agree that once you get a treatment plan and get going with it everything becomes calmer and easier. You’re in the hardest bit now where so much is still uncertain. I don’t think o handled that phase well but I went for long walks every day and tried to watch something on TV that made me laugh. I’m sure others have better suggestions. 

Whatever rhe MDT comes back and says it’s important to remember it’s just the first turn on a journey. There’s a huge range of treatments available and bowel cancer is notoriously slow developing and treatable. The upside us ‘early starters’ have is that our bodies can generally take harsher treatments (eg stronger chemo), can recover faster and we tend to turn up with fewer existing health issues. Also, the NHS will throw everything at you as being young gives you, generally, better chances of good outcomes. So there’s a bunch of stuff already in your favour. There’s a really good Bowel cancer U.K. booklet for young ppl that somebody should give you or you can find on their website. I’ve been lucky that I know two people diagnosed and cured in their 30s which has definitely helped with me feeling like the odd one out when I’m 30yrs younger than everyone else in the waiting room! Your CNS should be able to help you find some groups near you for younger patients. Otherwise feel free to drop me a message here and I’ll help if I can. 

m

Hi 

Welcome to the forum . I think it’s reasonable to want to know the timescales of communicating the results of the MDT meeting given it’s over a week . It would be different if you had a date for a consultation in place .

Do you have the number of your specialist nurse ? If not you should have an email address for your consultants secretary and you might wish to drop them a email . Your GP should be able to help you access this . They may actually have the results on their clinical portal . Some GPS are happy to share it .

Delays like this without some timeframe can make a difficult situation harder so you are quite correct to try and access the results .

We are more than happy to support you . We have other people around your age group too and might be nice for you to link in a bit with them .

You take special care ,

Court 

https://bowelcancerorguk.s3.amazonaws.com/Publications/YoungPersonsGuide_BowelCancerUK.pdf

MartinHerts Is it this one ? I was thinking about tagging you in but can I just say your post is a fantastic response and I am so pleased you posted this .

Court 

Yup that’s the one. Jaimin on page 11 is one of the two friends I mentioned. 

sorry for all the typos but I’m generally typing on my phone in the tiny box it gives you! But thanks. I remember how helpful it was to me having people reply to me on the early days. Trying to pay that forward. Plus the young thing is weird. I still feel odd about the sympathetic looks I get from other older patients despite us being on the same boat. And I’m yet to get through a chemo infusion without somebody asking me to help them log onto the wifi or otherwise fix some tech they’ve got with them!

Thank you for your reply. That makes me feel better. I just actually got a call today and I’ve got a meeting on Wednesday so should find out treatment plan then so feel better it’s moving forward now :) 

Thank you that booklet helped :) 

Great. So you have somebody going with you?

I think there’s some advice in the bowel cancer U.K. booklets about making the most from your doctor meetings. I found it helpful to write down all my questions in advance and then take notes of everything they say. Then at the end of the meeting I always stop and go through my list of questions to make sure everything is covered. 

even doing all I barely remember anything and always end up calling in the next few days to ask what actually happened! 

I do have someone going with me just to help take it all in. Thanks for that I will have to think of questions to ask :) just happy i will finally found out treatment plan soon. Don’t feel so lost now