So never thought I would be posting on a community like this but it did get mentioned during a recent holistic assessment that it can often help, mentally, to talk to strangers with similar issues, talking to family is fine but can often be a transferring of worry beyond their own worry from knowing lol
So some background, got diagnosed with a small tumour early July after a single instance of passing blood in late May. Initially the blood passing was not thought of as worrying by my GP, several urine tests came back clear and I didn't meet the age or normal criteria for developing BC. To cross T's and dot I'd was sent for an ultrasound and that's where things set alarm bells off.
Fast forward to late July and had TURBT procedure (wow, certainly an experience, no catheter should be that large post op lol) and informed they fully removed a 0.8mm superficial tumor which took less than 5 minutes, however it did take 25 minutes to get the pipe inside...didn't know whether to laugh or cry at that one. 2 weeks later results back, low-grade non-invasive with plan to monitor with 3 month, 6 month and then yearly cystoscopies.
Just had my first follow up cystoscopy, all clear for the moment (outside of TURBT scar tissue) so next due in 9 months.
Pretty much wanted to send this out into the void, set down my thoughts into words which is rather cathartic actually.
Hi Lonestar and welcome to the group. Your story will be familiar to many of us. Great to hear you have had the all clear. Lots of support here and always someone to share your thoughts with. Best wishes going forward.
Hi Lonestar
a story that rings a bell with me regarding the doctors attitude took me 4 attempts to get a referral had superficial diagnosis myself at 44 years old and now on yearly surveillance there is to much of this attitude from doctors when mine phoned me for a cancer care follow up I let them have it to such an extent that I told them that if my diagnosis was a lot worse and invasive I would not hesitate to to bring proceedings against them for negligence they need to be more on top of it especially with females as well to quick to put it down to infections or menopausal issues or monthly issue for the ladies and then by the time it’s found the women have a uphill battle on their hands and welcome to the group some wise minds here and a lot of experience
best wishes to you
Ste
I never imagined wanting to join a forum about a personal issue, but I'm very glad I did. There are some things only a fellow patient can understand.
Good to hear that yours is low grade - did they tell you it has a high rate of recurrence though? So be sure to go for your regular checks. Hope all continues well.
The consultant didn't mention high rates of recurrence but I've read as such. They've pretty much based my plan on the size, it being a single tumour at the time and my lifestyle doesn't meet the normal criteria for BC.
They are using my first two checks as a benchmark before switching to yearly checks until I've reached 5 years clear....after that I guess I'm used off the books until I notice something again lol
Many of us have no known risk factors. I was told it was a factor of age, despite my brother also having been diagnosed some years before. His was low grade and after several recurrences removed, was eventually clear long enough to be discharged.
Mine was high grade so I went a different route.
Yeah 'unknown' factors or reasons were mentioned by my consultant during the grading feedback...sometimes these things just happen was pretty much the reasoning.
Glad to your brother eventually got clear long enough to be discharged from the hospital but equally sad that yours was high-grade and you had to go a different route...not read much on here so don't know your full story but hope you are coping well and winning!
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