2ww referral

I finally had some good news today which I didn't expect at all. Writing about what I'm going through really helps me try to make sense of it.

I started getting bowel symptoms in March (going to the toilet more often, bright red blood and pain when eating) and had a positive FIT test but thankfully all other tests (faecal calprotectin, blood tests, rectal and abdominal exam) were all normal. Because of this and my age, I didn't meet the 2ww criteria but I was told I was going to be referred urgently. I asked the hospital how long it should take and they said 20-25 weeks so that would've been by October.

I haven't lost my appetite but recently I've lost a lot of weight and have become incontinent. I had called so many GPs and just felt like giving up as every test just kept coming back normal while I was suffering.

Today, I decided to call my GP at 8am and see if the doctor who had referred me had any telephone appointments available. She sounded concerned about the weight loss and said she doesn't want me to continue losing more weight. I was more concerned that I've become incontinent.

She asked if I've heard from specialists and I said no. I said that I was more scared about my incontinence as it is hard having to live like that but then I got upset and stopped talking. She paused and told me I am young so shouldn't have anything like cancer. I thought that would be it and that she would fob me off. 

She then said she has checked off a lot of symptoms and said a lot of stuff about it and asked if it made sense to me and I said yes but really I should've said no because I've completely forgotten what she said. She then explained to me about the 2 week pathway (which I already know about a lot from research) and I couldn't believe she was actually going to refer me and she asked if I was okay with that and I felt like I was jumping up and down in my head because I couldn't believe I don't need to wait until October (so concerning how long the urgent wait list is) anymore. Of course I said yes. She told me to contact the GP if it's longer than the 2 weeks as soon as possible.

I never thought this would be something I'd be happy about but it feels like I've been waiting for so long so I'm so glad things are moving again. Hoping so much that cancer is ruled out and that I have a less serious condition. 

  • I'm doing okay thank you. I've noticed I'm getting pain from eating but I don't know if it's just from being anxious.

    I'm not sure what the stool sample is for. I think it's to check my faecal calprotectin as it was normal in March the first time I did it so might have changed now.

    Friday feels so long away - I hate waiting aswell. I think in the meantime you should make a note of all your symptoms and worries to tell the nurse from the colonoscopy team.

    Thank you, I hope everything goes okay for you aswell. It's good we're both on the 2ww pathway considering we're both young. I heard young people usually get fobbed off.

  • That's the same as me since I've been referred I feel like I'm getting symptoms I didn't even get before ‍♀️  I'm finding it difficult to eat aswell where your worried so much eating is the last thing on my mind.

    im not sure I've even had one of those test tbh I did have one for Helicobacter recently because I've tested positive in the past so they just done another one just incase but that was all clear was my first time ever doing a fit test though. 
     

    that's what I've been told to do and I'm going to do all of that I don't want to miss out anything important when I have this phone call have you had a call or anything yet? Or a letter for a date? 
     

    thank you so much I Appreciate it :)  and I've heard the same, even when I've spoke to doctors there like oh your to young but still that doesn't mean anything, how old are you? Is the number in your name correct? 

     

  • Also how did your phone call go with the doctor? 

  • Yeah stress definitely doesn't help with symptoms. I had a banging headache while I was waiting for the call and now the headache's gone.

    I'm not sure if I had that test. When my GP called about my results back in April, she said it so simply, 'your blood tests were all normal but you know the test that looks for blood (FIT test), that came positive, but that's nothing surprising as we already knew there was blood'.

    Afterwards I requested my medical records (hypochondriac geek alert) and found out my FIT test was positive at 400 and that my stool sample test for faecal caprotectin (I think it looks for inflammation) was normal.

    That's good that you're not going to miss out anything important. I've had times when I have and then regretted it.

    I didn't get a call so I messaged the medical centre asking if I'm supposed to be expecting a call. The receptionist called saying that I wasn't supposed to have a telephone appointment and that it was just them sending a notification to the doctor to send off my stool sample. I felt a bit embarrassed thinking the receptionist probably thinks I was expecting a call about my results. 

    Yes I'm 23. I'm glad my GP hasn't mentioned anything about my age until she told me about the 2ww, but even then she just said 'you are young, so it would be unlikely for the cause of your symptoms to be something serious like cancer..' (me thinking she was about to fob me off) '.. but I don't want you to be losing weight this quickly and you've been having a lot of symptoms and been waiting for a referral since April, so there's something called a 2 week wait pathway I could refer you on'.

    I was so relieved. It felt like such a huge weight lifted off my head as I was expecting to wait another 10 weeks since I was told by the hospital at the beginning that the waiting list is 25 weeks. 

  • Hi [@char1995]‍ have you had your appointment yet? Hoping it goes okay. 

    I found out I have an appointment next Friday at 8:30am. I'm guessing it's a colonoscopy as they're going to be sending laxatives through the post. I feel impatient waiting to get further info.

    I sent a message to my GP asking for the results of the stool sample and usually if the results normal, they send a message back saying it's normal. But this time they called and said it's nothing to worry about (exactly what they said when my FIT test came positive) and they said I'm already on the 2ww so they'll review me after that.

    I don't mind if my stool sample's abnormal. I just want to know the result. I was more scared that something would be wrong and not picked up.

  • Hello [@amelia98]‍ how is everything going did you end up having your appointment? I still haven't had mine yet as they didn't have any appoiment Available mines this Thursday coming I'm so scared :( 

    Did you find out if your fit test came back positive? I hope your keeping well ️

     

  • Hi @char1995 Oh no, it must be stressful having to wait that long. In my experience, the specialist was really kind and spoke gently. I hope your specialist will be like this.

    Thank you. It came negative at 5ug/g so only some blood was found which is quite a surprise as I thought I wasn't passing blood anymore. Back in April, it was 400ug/g so that's good it's decreased a lot. Now I see blood so I'm guessing it would come positive now.

    I've had a sigmoidoscopy now and found out I have haemorrhoids which is so relieving for me. I'm shocked as my GP didn't find haemorrhoids and my only symptoms of haemorrhoids were bright red blood and incontinence. They took biopsies so hopefully, those will be normal.

    I hope you are also well and find out you have something that's not serious.

     

  • [@amelia98]‍ it really is so horrible I've been waiting near to the 3 week mark and I just can't stop panicking :( 

    oh that's great news that not that much blood was found when I have my telephone call the lady told me mine was 47

    that's great news I'm so glad everything had come back fine for you apart from the Haemorrhoids I know they can be a pain as I know I currently have them and no treatment seems to be working :/ 

    I hope so to I only have 3 days to wait but I'm just so anxious that there's something wrong :( 

  • It sounds horrible that you have had to wait that long. When did your symptoms start if you don't mind me asking?

    I hope the blood isn't caused by something serious. My doctor didn't mention to me when my FIT test was at 400 (I found out from my medical records) so I'm guessing she didn't think it mattered. She just told me it came positive but it just looks for blood so I already knew that. She then said the reason she referred me is to find where the bleeding is coming from.

    It's sad no treatment seems to be working, I hope you find out what is causing your symptoms so that they can be treated.

    Hopefully, the 3 days go quickly. Are you studying/at work and have had to take time off for this? Maybe use this time for yourself and do things you enjoy like watching movies. I know it is hard to think about other things. I'm here if you want to talk. 

  • Yeah it really isn't nice waiting so long when you have health anxiety we'll I've had on a off ibs symptoms for quite sometime so that's when it al first started but for the past couple of years I have also have a few bouts of haemorrhoids but I also know there common when your pregnant or given birth and I have 3 little ones and my youngest is 6 months old, but after I had her a few months later I noticed some blood in my stool so o got checked out by my gp and they confirmed the haemorrhoids which I did get treatment for but they didn't seem to go and I started to just panic more about my bowels and just worry that there was something wrong with me and my doctor said rather then do a colonoscopy there do a fit test and I honestly didn't think I would come back positive but I couldn't see anymore blood in my stool so when it did I was so shocked but I end up going back to the gp because I had seem more blood in my stool and it felt like the haemorrhoids had gotten worse and they confirmed they were still there but just with an outside examination not internal so that's where it all started from and all my go said to me was if a fit test comes back positive they just instantly have to Refer you.

     

    I hope so to it's just hard not to think the worse and no I'm not currently studying or working at the moment are you lovely? And did they said how long it would take for your biopsy? 
     

    thank you so much that means a lot x