Recent diagnosis

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Hello peeps, newbie to all of this!

Visited doc last December for unintentional weight loss (after chronic UTI, fevers and night sweats). Had lost 1 stone over 6 months, down to 7.5 stone. Usual tests arranged, diabetes, thyroid etc, but examination revealed a lump in my right side so urgent referral for CT scan. That revealed a large simple clear cyst of 5cm and a kidney tumour of 1.5cm on the other kidney. Active surveillance, 2nd CT was July this year. Phone call from local hospital was 'almost certainly cancer', wait for MDT meeting and report. 2 days later I'm called in to hospital where they then say MDT team is more concerned with the 'suspicious' growing cyst, now 5.5...and also the sudden manifestation within the 6 month wait of another 3 'masses', one under the large cyst and two on the tumour kidney. BUT....active surveillance for another year. Meanwhile, in the last 7-8 months since 1st scan and weight check I've lost another half a stone which they tell me can't possibly be due to small tumour, only advanced cancer. I can also feel the cyst uncomfortably when i bend or twist...probably because I'm now so skinny at 6.13. The CNS assigned to me took me to one side afterwards and said to go back to GP about weight loss, but if I start peeing blood or have pain in right side to contact her directly, not GP! I'm very confused, but also concerned; if I carry on losing weight, will I be too thin and weak for the ultimate surgery when they decide to do it? The fatigue has been quite brutal for well over a year now, as has the muscle loss. I'm 60, 5'6" and was fit and athletic before all this.

Thoughts please? 

  • I was diagnosed in Nov 2021 and lost a lot of weight too in the period prior.  And I felt absolute pants, too!  Very fatigued and lacking energy.   I started immunotherapy in Jan and felt better soon after.  

    I'd suggest you go back to them and explain you have no energy and waiting another year for the next scan isn't an option.  

    And/or ask for a second opinion.  

  • Thank you, I will. Or at least, I have another appointment now with GP.

    Hopefully we'll also discuss the letter I (and he) got from the hospital 2 days ago also telling me that I had a BMI of 36, prostate cancer, erectile dysfunction and urinary incontinence. I'm female, and under 7 stone. I just hope the poor bloke it refers to doesn't now think he's also got kidney cancer to worry about. The hospital said it was the fault of a secretary but nothing to worry about. Given that it makes no mention of my verbal and scan diagnosis of the extra tumours I'm beginning to wonder if that was actually my scan they were looking at!

    My son is furious, and wants the whole investigation re-done privately for clarity and peace of mind and is prompting for subject access request.

  • Oh dear.  How awful.  

    Are you in England or Wales?  Have you heard about the Patient Advice and Liaison Service (PALS)?  It's "like" a complaint system for the NHS.  Some people on here have had very good outcomes from it.