I’m currently awaiting a full diagnosis for testicular cancer. Ordinarily I wouldn’t question the wait and the processes of the NHS as for everything else they have been great and when I had a stroke at a very young age years ago, they did really well in my care. However, this is cancer we are talking about and with such a long time since symptoms began and some major issues arising with my surgery and aftercare, any delay in getting a diagnosis and treatment plan is concerning me greatly.
I first noticed my left testicle slowly increasing in firmness and size when I was admitted to hospital in March 2020 with kidney stones and a kidney infection. Obviously, this coincided with the arrival of COVID and the way hospitals and GP’s operated changed entirely after that. The infection was handled and I was sent home, but scans showed I had dozens of small stones on both sides that I “needed to keep an eye on”. My testicle was inspected whilst in hospital and at my follow up a few months later, when doctors simply said “You really don’t want to be admitted to hospital right now with the pandemic, if neither your kidneys are in pain or this lump isn’t giving you functional pain, you should wait and only go back if you get immediate concerns”. With that, I attempted to get both looked at again at the end of 2020 right up until Spring 2021 as my urinary habits had changed and by this point my testicle has swollen up to 3 times it’s normal size, but my GP wouldn’t see me, local drop in centres weren’t operating and the hospital wouldn’t take a look either.
Fast forward to early September 2021 and after forcing the issue at hospital and a local walk-in centre they finally convinced my GP to take a look and do a referral to get an ultrasound. Due to incompetence on all sides, I didn’t get my ultrasound until late November, by which time my testicle has become ‘grossly enlarged and deformed’ (according to the ultrasound report) and I had begun exhibiting severe stomach pains, lower back pains, severe dizziness, stomach swelling and fatigue that hit me to a point I felt sick and would fall asleep spontaneously. These symptoms hit fast and coupled with a loss of all appetite hunger/full feelings came at just the right time for my urology appointment, which confirmed the diagnosis of testicular cancer and removal of the testicle on 1st December.
The operation was handled poorly and after a fumbled and painful 7 failed tries and 30 minutes to give me an epidural (they were concerned about putting me under general anaesthetic because of weakened breathing after the stroke and a bit of sleep apnoea), I had my op which seemed to go ok, but they scratched my throat with the tubes which is still giving me irritation now, failed to tell me not to move about, failed to give me a scrotal support and apparently didn’t cauterise properly internally, leading to huge groin and scrotal swelling from a haematoma that is still there and looks and feels like the removed testicle. I also had a fever and was on antibiotics for 4 weeks for an infection and pain that I’m still in.
I had my abdominal CT scan to check for what I was told would be spread and any kidney/urological issues that might be there on the 15th December and it’s now been over a month since my op, and after concerned phone calls that I’d had no follow and no word on ANY of my results up to this point, I had a very tired, painful and stressful Christmas wait where my fatigue, laboured breathing, abdominal pains and unusual urinary/appetite symptoms seem to get worse every day and upon reaching out to the cancer nurse yesterday, got a call back from one of the urology doctors who explained that my histology report STILL isn’t back, my CT scan still hasn’t been looked at in detail by the multi disciplinary team, and that all I can do is wait. I stressed the timescales we are talking about, my lack of info, the issues with my surgery and aftercare and my increasingly debilitating symptoms and so finally managed to get out that my last bloods (didn’t say when they were taken) showed no significantly elevated levels on anything tested for, and that all he could tell from the CT scan was there were still some kidney stones and some enlarged lymph nodes. He couldn’t identify any masses but said “my symptoms don’t tally up with what he is seeing or the blood work” and that I should probably just go to my GP with any other issues.
My major concern now is that from what I understand, blood work doesn’t often indicate a lot of testicular cancers (ie.seminoma, which is more likely at the age of 41 and based on the slow growth of the problem), no oncologist has yet looked at or discussed my case and my symptoms would suggest something is seriously wrong in my abdomen, possibly my lungs and maybe even my brain. With a lack of care so far I’m not inclined to accept a dismissive “you’re probably ok, just wait” explanation from a non-cancer specialist after 18 months since first getting issues and 4 months of delays.
I’m strongly debating going to see a private doctor at a local private hospital to get my history looked at and see if things can be sped up as it really doesn’t feel like I have time on my side and I’ve lost faith in how my case is being handled. My GP surgery is currently being investigated due to lots of complaints over service from patients so I have zero inclination to return there based on my own experiences.
Is this a good idea? Should I at this point switch my care to private in an attempt to get my case looked at more seriously and quickly?
