Wishing I hadn’t looked

So two weeks ago I took myself to the GP because I was worried about a few things. Mainly blood in my urine tbh, but also lower back pain, some recurring cystitis, and being tired. Well more tired than normal! I am 38, 39 next week and a mum of six children aged between 5 and 20. 
 
I saw a medical student. I have a history of hypertension and chronic kidney disease. I thought maybe my kidney disease was worsening tbh. The poor medical student looked terrified when he went through my history. He was perplexed when he tried to take my blood pressure and couldn't get a reading manually. He called his supervising GP in who did get my bp... 6 times! It was around 200/150. I was then asked for a urine sample and student dr asked if anyone in the family has diabetes as there was glucose in the dipped urine. There isn't. Then I was sent for bloods. Told an urgent referral had been made for me to urology and I'd hear from the hospital within two weeks. 
 
In the meantime I took it upon myself to ask for full access to my coded medical record (more because I hate phoning for results and wanted to check my blood results). I had a call to say Dr wanted to see me to go through results and an appointment was made for March 14th. But then my request was granted and I opened my coded record. And on my medical record was the entry "Transitional Cell Carcinoma of the Bladder (New Episode)" and I freaked out. 
 

My husband told me to see if I could get an earlier drs appointment and so I have rescheduled my follow up to Monday morning at 10am. I have been trying to convince myself it's a mistake, I have only had bloods and urine tests, no biopsy's or anything. But being me, I've also googled a lot and it does fit my symptoms and can apparently be diagnosed through urine tests... so I just don't know. 
 

i feel even worse knowing that I first saw blood in my urine 4-6 months ago and I put off going to the GP because I was too busy. My urine had protein ++++ and glucose +++ and ketones off the scale. 
 

And I have yet to hear from the urology department at the hospital. My head is all over the place. I don't think I have ever been so scared and Monday feels like a long time away to speak to the drs. 
 

thanks for reading this far. 

  • You sure it can be "diagnosed" via urine samples? Diagnosis of tissue cancers usually require a biopsy.

    If it's like other cancer markers, they're not diagnostic in the true sense. Markers tend to be useful for people who have been diagnosed, as then they are also useful for telling the treating doctors if the treatments are working or not. But almost all markers can have benign reasons behind them or other non cancer related reasons. Bowel cancer has markers as does ovarian etc cancers. But not everyone with those raised markers are found to have cancers after more testing.

    I mean, if you had previously been diagnosed with the cancer you are worried about, then yeah, those markers would be significant.

    It's why having access to your medical records isn't really a good idea for some people. A lot of the stuff in them contain medical jargon, which can sometimes mean the little we do understand can come over as being more pressing than it actually is.

    Because you have whatever you have in your urine, they want to rule that out, so it's went to the top of the list. Not too dissimilar to how many woman get pushed onto the 2 week breast cancer pathway, but the vast majority come away learning they have something benign. But cancer had to be ruled out.

  • From what I've read, and yes, hubby and mum have both told me to stop reading now... but I like to be knowledgable about these things, the type of cancer coded on my medical records is initially diagnosed through urine cytology, and then graded through imaging and biopsies. 
     

    I also have a friend who is a GP in a different part of the country. I have shown her the coding on my medical record and she has told me that yes, it's been coded as a diagnosis. However, she feels it could be a slightly premature diagnosis and would definitely NOT have recorded and coded it without further investigation, although it's possible to diagnose from the urine tests I've had already. i spoke to her hoping she'd tell me it was a query rather than a diagnosis (although it seemed odd to me to only query that one thing, when like you say, it could be a myriad of other, potentially less scary things!).
     

    I'm still holding on to the hope that it is a mistake but only by a thin thread. I've also had some weird emails from the nhs/drs surgery regarding things like Covid treatments that I am now apparently entitled to should I test positive for Covid since my initial appointment on feb 28th, which I find suspicious and worrying. 

  • The covid thing could be down to the fact that you have kidney disease which means your immune system can compromised. But i don't trust the mrna vaccines, I regret having mine. You can have high protein and glucose down to kidney disease. It's easier said then done but i would go in with an open mind stressing won't help you lovely. I've been waiting for my CT scan results for nearly 2 weeks and was fast tracked like yourself. I hope it goes well for you. Keep us posted. 

     

    Kim x