Young but no one is taking my concerns seriously

Hi Blico,

Sorry to read what you're going through, it's horrendous when you're in so much pain and nobody is doing anything.

I also received the same treatment from doctors initially, when I had really bad right side and right rib pain, along with digestive issues. I was told the pain was in my head and sent awsy, so I've just lived needing to take painkillers daily, since nobody would do anything at that time.

I've been left like this for 18 months. Recently I started having blood when passing stools and then had a high positive FIT test, so they gave me a colonoscopy where they discovered a large bulge on my appendix. They then did a CT scan which showed my appendix had doubled in size in a year. Turns out it's been this causing the pain all along as it was borderline enlarged last time apparently. So I'm now awaiting my histology results with dread, since it's been left for 18 months, so if it's bad news, then the wait won't have helped anything.

Therefore, if they're not doing anything for you and you're in pain, then I think you might be best to pay to see a private GP/consultant to get proper answers, if you can afford it. Or there are options such as just paying for your own scan which would be cheaper and could give you some answers.

Your GP would likely give you a referral letter for a private scan, since they were referring you for one anyway. It's better than leaving things. If anything came up on that scan, obviously your GP could then use that to get you treatment. I seriously wish I'd done that 18 months ago.

Unfortunately my experience of the NHS had been dire, and the way I was treated initially was appalling. If your symptoms don't neatly fit into their idea of a condition, then it can be overlooked, like mine was. That's the excuse I'm being given, that and the fact it is rare, but I suppose at least they're doing something now, 18 months on!

Other people seem to have better experiences, but if you're not one of the other people, then a private scan is your only option.

Good luck, I really hope you get things sorted x

Thanks for the reply, and appreciate your thoughts.

I’m sorry you went through such a long time and had a similar experience to me. Have you heard about your histology results?

No wonder you were in so much grief, hopefully the histology results come back ok.

I visited the GP today, and I think I broke down. I clearly wasn’t managing well, she was more worried about my mental health than anything else. She still didn’t think I had pancreatic cancer, and reassured me, however, I’m still not convinced, and I feel the only thing that would give me insight and clarity is the CT scan. So I think I’ll go along with your advice of sourcing it privately.

I 100% agree with you that the system is flawed, and referrals need to be met in a tight box. Unfortunately if you don’t fit that, you get looked over. The amount of times I’ve been told that “it’s highly improbable” I have pancreatic cancer due to my age is wild. Yes, it’s a rare cancer, yes, it’s a very low likelihood to happen in young people, but doesn’t mean it’s impossible.

Hope you’ve been keeping well. 

Hello, sorry to hear about your ill health, I am too in the same boat, I’m 34 years old and also having upper left back pain which I can feel in my stomach, especially when I’m eating. I’ve had belly issues and also stool problems. They’re very large in size and all last week they were very loose.

I’ve had an abdominal USS and blood work including a X-ray and another ultrasound on some lymph nodes. All come back fine, but my pain is still here and my digestive issues are at an all time worse. I’m going back to A+E again today for some more bloods as something has got to flag up soon, I feel terrible. Constantly feel like my body isn’t absorbing nutrients and I’m deficient in something, completely lightheaded all the time. Keep me posted with how you get on. Thanks for your post. 

Thanks for the reply! Keep pushing and, although it sounds bad, you may have to exaggerate your symptoms to be taken seriously in A&E. I went multiple times and no one took my concerns seriously, and tbh, was a waste of time. 

It’s been a couple of weeks now and unfortunately things have taken a turn. I’ve seen my GP weekly, saw a consultant from work and have a gastro appointment this Wednesday on the 2 week referral pathway.

Currently, my fatigue and stomach issues are the main problem. I’m struggling to get up in the mornings and am always tired. I’m constantly getting stomach gurgling in the upper abdomen, particularly after I eat. 

I will post my updates here, please keep me updated on you guys, really nice to hear from you!

It’s good to hear you are getting somewhere with the gastro referral. I’ve been asking for one since late January. Still not been referred, that’s the main reason I’ve attended A+E today, it’s took a real toll on my mental health and i find myself not seeing a future anymore, my symptoms are so scary and i feel like I’m wasting away. I’m so scared for the answer but at the same time, need the peace of mind. It’s a catch 22. 

how come they have put you straight on the 2WW are they suspecting the worst case scenario? Has there been any positives with your tests? And what testing have you had so far? Sorry for the questions, A+E is mentally draining on me. Blood pressure is through the roof. 

Thanks, 

Mike.

Hey Mike,

Sorry you’re going through this worry, but no one knows your body best but you! Rely on your friends and family for support too. 

Unfortunately, I went through a similar experience to you. I worked in a hospital, and went to A&E multiple times given my symptoms and was told, multiple times, it’s unlikely I have anything given I’m so young. The reason they tell you this is because, due to our age, and the NICE guidelines that all health practitioners follow, you will likely not have further investigations outside an ultrasound (unless the ultrasound showed something). It’s crap, but unless you fit nicely into the referral criteria (>65 y/o and showing multiple red flag symptoms), it’s unlikely A&E will do much. I even discussed it with an A&E doctor I worked with and he said the same! It is best you chase your GP for investigations, or if you can afford it, order scans privately.

I also had the above advice handed over to me from one of the PanCAN nurses via their phone line. She was honest about the situation, which was appreciated. I would recommend talking through your situation with them as I found them really helpful. 

My advice to you is, save yourself the stress and time going to A&E unless something is terribly wrong (jaundice, extreme pain, or loss of bowel or urinary function/mobility). It likely won’t be much help outside of routine bloods and maybe an ultrasound.  

I had to push for a referral for the 2ww, my GP still doesn’t suspect cancer, but we had several tests (through A&E and gp) that ruled out common causes. I had multiple blood tests, tests for rheumatoid function, cortisol levels, FIT test, H. pylori stool test, CT of urinary tract, faecal elastase test (still awaiting this result). I also ordered a CT chest and MRI lumbar privately, as this was before I had the stomach issues. All came back clear besides a low vitamin D level. I haven’t had any CT abdomen or endoscopies yet, which is what my gastro will likely investigate. 

To get referred to the pathway, your GP would need to rule out common causes as mine did above. 

Hope you’re doing ok, let me know how you get on. Also happy to answer any questions or just talk things out! 

Hello again, so after a visit to A+E and a little exaggeration regarding my symptoms (only a little). I’ve been also put on the 2WW list, they will be in touch in the next 2 weeks. They took my bloods again (this is my third lot of bloods now) and all come back normal, only thing he advised was slightly elevated billirubin levels (but these are consistent with the previous 2 tests) I questioned the levels and he just said that’ll be normal range for myself. Everything else regarding my lipase/amylase have been fine. Just a matter of waiting for two week referral. 

Had another physical examination which was a lot more thorough than previous Dr’s. As much as I was really frightened to go today, I’m happy that I have went. Finally I’m heading in a direction with answers, regardless if they’re ones I want or do not want. My head space is still not great, especially with the billirubin levels, but he wasn’t that worried so I’m going to try not be, not until I’ve had some further tests or checks. 

I’m also at my GP again next week to discuss an ultrasound on a suspicious lymph node in my groin, I’ll mention my billirubin then. I might ask for a F elastase test too, as I’ve not done one of these yet. If they decline, I’m going to pay for a test myself. 

speaking to someone who can relate to my frustration and symptoms, has brought me so much calm. I thank you. 

Hey Mike,

Glad you found today helpful and at least you have some answers and on the right path. I think it’s good the doctors are not concerned about your bilirubin levels, I think they’d be more worried if they were really high and you were jaundice, so that’s a good sign. Also good that your lipase/amylase is normal, so all good signs!

It’s a pretty weird situation we’re both in, but agreed, it’s been very helpful having someone else to talk about this with. 

Hopefully we both can get some answers from this! 

Hello again, yes today was overall helpful, feel like I’m heading in the right direction, much better than my GP telling me I just need a good holiday. 

Yes he did mention that he would be concerned if they were 200+ but because mine was only 5 over he said this is usual in some patients. He did give me some confidence even though he did tell me that the pancreas runs from front to back in the abdomen when I explained that’s what I’m concerned about, pointed to my pain and he advised it’s not where my pancreas is. However Google and other sources say different, so I’ll take him on face value. 

trying to remain positive for now as my terrible thought process has only just eased for a little while, all my worrying has probably caused more symptoms than what I have. 

He did say the usual “you’re only 34, no family history” which frustrated me. But I suppose he’s just trying to calm me down and make me feel better. I’ve just had such a tough 18 months. Lost my father last year after being his carer for so long, then had a stressful time with my mrs being pregnant and having an emergency C section. Now all this, hopefully time will tell and I’ll have some form of answers. 

Hey Mike,

Glad you found the doctors reassuring. Just know you’ve done all the right things, you’re on the right pathway now, and you’re in a good place.

Wow, that is a lot to handle in such a short period of time! You must be stressed with all this going on, and you’re right, it’s probably exacerbating some symptoms.

I have my GP appointment this morning, not too sure how much this will add to the scheme of things, but let’s see. 

Hope you got some sleep overnight!