Waiting game

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Hello all,

New here - in fact, I don't think I've ever posted on a forum before in my life!  But here I am - it's a lonely waiting game so I thought I might pop on and say hi.Wave

I went to the doctor in October 2024 with a few symptoms which I thought were possibly early menopause (turning 40 soon). I've been experiencing night sweats, muscle and joint pain, a pain in my side and fatigue mostly. 

The doctor ordered some bloods and did a urine sample. I ended up doing 4 urine samples as 2 of them showed haematuria and then 2 didn't. The doctor just said the first two were probably contaminated and everything fine but as i had some pain in my side she ordered an abdominal ultrasound anyway. My bloods came back normal apart from very low iron. 

Finally went for an ultrasound on 7th Jan and the results to this came up the very next day on my Patients Know Best app. I opened them and saw that they had found a 2cm solid organ tumour on my right kidney. The results said CT with contrast advised but that they suspect this is just a hypertrophied column of bertin. (I had to Google this as I didn't know what it is and it turns out this is something you have from birth and is fairly common). However, I had had an ultrasound scan on my kidneys 5 years ago for something else and nothing about a column of bertin flagged up back then - I went back to my old notes to check and it said both kidneys appear normal with no noted lesions etc.

So obviously, my mind then went in to overdrive! So, I tried to call my GP to discuss these results and the receptionist said my results weren't back yet (even though I could see them on my screen). She then said it was a 6 week wait for an appointment. Meanwhile, my symptoms seemed to get worse so after two weeks I started phoning the GP to try and get an appointment. Around a week later, a doctor eventually phoned me - and still hadn't looked at my US results. She only looked at them there and then over the phone because I asked about them. She told me it all sounds like nothing to worry about and then said my symptoms were most likely due to stress! She started asking me how many children I have and about my job and then asked if I was depressed?! I'm not depressed and I wasn't stressed at all until I got these results.  At this point I felt completely confused and dismissed. She then said she would order me a CT scan with contrast but there was no urgency about it. 

I just had the CT scan this week and now I guess it is another long waiting game for the results!  I'm wondering how long people are currently waiting for their results? Is it normal to be dismissed by a GP like this?

I don't know if I'm overreacting about all this or not but my mental health which was totally fine before all of this is declining with all the waiting and I feel like I don't have much faith in my GP or the NHS right now. I'm now not sleeping very well either. 

Anyway, apologies for ranting - even if nobody replies I think it just feels a bit better to write it out! Slight smile 

If you got this far, thanks for listening! 

  • Hi today is my first day  here I have never posted anything before 

    Your symptoms  are identical to my wife when she was eventually diagnosed 

    Her tummor was 10cm that was two years ago she is on immunotherapy  only

    I agree our nhs is not very good at joining the dots up sometimes

    We have managed to get her in at the Royal Marsden on the nhs theh seem to do better

  • Hiya. The waiting is the worst.  However, the communication with ur GP seems not as satisfying as you would like. I am not a doctor so I can't really comment on your results. The size of mine was 6.5cm and many people on here have had quite large lesions too, so I hope this takes away some of the fear u may be feeling. You have had the ct done,  which is very good because some people have to wait for that too. How long did your other results take? Because appointments at ur GP take such a long time I would book an appointment now even if it is a few weeks away, then at least u are in the system. When I was first diagnosed I felt adrift. I never ask for help. But to be honest I did ring macmillan. She was wonderful, she just let me talk...and I felt listened to....she couldn't give me results etc, but she gave me an ear...and it really helped. I hope some of the above has helped a little...it is such a friendly group so don't feel ur alone..hugest hugs sweetpea...

  • Hi Dee28, thanks for your reply. I'm so sorry to hear about your wife and the tough battle she is going through. The more I read, the more I realise that it is quite common for people to feel dismissed. It's such a shame and it shouldn't be like this. 

  • Hi Fleabane, thank you. My blood results and US results were quick and appeared on the patients know best website within a day or two. I waited a long time for an appointment for the the US scan and then around 5 weeks for the CT scan. 

    It's trying to speak to a doctor to discuss the results which is the biggest problem. 

    Not sure if it is just my doctors surgery or not but it feels like a fight to speak to someone and when you're already feeling mentally drained, fighting is the last thing you want to have to do! Good call on the booking an appointment now - I'll see if the Receptionist will let me do that. 

    Thanks for sharing some of your story too and I really hope you're doing OK. 

    It is nice to have somewhere to discuss this and chat to people who have had a similar experience. 

    Many thanks and big hugs to you too. 

  • Thankyou for your reply it is really  hard having the person you  love take there  anger and pain out on you but not being in that situation  myself I can only guess  what she is going  through  mentally 

  • Dear Dee. I am the one with the big 'c' in my marriage and it can be overwhelming not only for me but my husband too. Anger is a partner of fear and I am sorry that your partner seems to aim that anger/fear towards you. Apart from dealing with the disease I am emotionally dealing with guilt for not being able to do things for and with my husband as I used to because I get so tired. I get frustrated and upset at times too. But remember there is help out there for partners and family too. Reach out to your GP, macmillan are wonderful to talk to. Give them a ring, it's free and it's good to talk about how you're feeling. Maggies, if u have one in your area is also an amazing place to contact and visit as well. I hope this is of help. Don't feel u have to carry this burden alone.. hugs