OK firstly hello everyone
I will try and keep thi short(ish)
I am a 50 year old male and i was diagnosed with high grade superficial bladder cancer in my urethra last June/July. I was told they would do a cystectomy but then they did an MRI and they could see no signs so decided to refer me to another hospital (I had many, many delays in treatment and had around 3/4 cystoscopies, each time dealing with what was there and then they found CIS in my right ureter.
The plan changed again to removing my kidney & ureter and treating bladder with BCG and urethra with mytomyacin gel.
I was then seen at the new hospital and they took over my care but wanted to do their own tests. They found no signs of cancer with a cystoscopy that was November.
They decided that because of previous findings that yes they would remove kidney / ureter. This was scheduled for Febuary.
Whilst doing a cystoscopy before the actual surgery they found it had come back in the urethra, ureter and had appeared now in my bladder so they abandoned surgery to wait for biopsy results.
Once again plan was decided to try the surgery again but they order a PET-CT scan as one of my lymph nodes was on the borderline.
Then things seem to have just gone crazy, i saw the consultant again who said unfortunately the lymph node was positive i believe he said near the aorta. So they will need to refer me to oncologist for Chemo and if the cancer responds then revisiting the csystecomy.
So i apologise for the long winded post but i have no idea what i am dealing with here and reading only makes things worse.
Is it possible that if it has spread from my ureter to the lymph node near aorta that this can be cured by chemo or removal?
or am i now at stage 4 and palliative care, i just dont know as i cant seem to piece everythingg together.
I just feel so angry that they were talking about removing the bladder etc in August and now i feel it is too late
Anyone with experience of bladder cancer spread to lymph nodes if you have any advice you can share it would be appreciated.
So its been a while (ive been busy doing loads of garden work)
Thought i would update as i had my 1st scan on my immunotherapy regime, it was after my 4th cycle and the result came back as no progression, still only looking like the 1 lymph node, which is well within normal size, so i have been having a good time recently.
Still getting a little tired but managed to build a shed and seed and top dress my gardens so a step forward. Now had 6 cycles of immuno and will be having another scan after 7.
I am waiting to have my stent replaced so am hopeful when they do and look in the bladder maybe that will be good news also.
Keep going no matter what they gave me 18 months thats 14 months ago and i feel better than i did then so heres to enjoying life and grabbing it by the balls
Hope everyone else is doing ok
Andy
Hey Andy, good on ya. Glad to here you are keeping busy, helping with the positivity, etc.
Keep on keeping on, especially with the out door life.
All the best
Simon
Great to hear you are keeping on and there has been some good news, hope there will be more. Keep grabbing life by the balls, enjoy stay positive and enjoy your garden, fresh air and growing stuff. All the best x
That's great news so pleased for you Currently feeling like you did when you first posted Mr W had bladder cancer successfully treated with bcg Two years ago blood in urine results patch of cancer in ureter Kidney removal not an option Laser a stent in ureter every 6 months and ct scan Last appt something showed up on other ureter so as well as stent change and laser biopsy on other side Earlier today got copy if letter from consultant to GP comorbidities in addition to the usual AF high blood pressure recent diagnosis kidney cancer Talk about bolt from the blue It was never mentioned before we met with consultant after the procedure Just biopsy done and sent off Discharge note mention endoscopic fragmentation of renal calculi which I understand is shattering kidney stone That ties up with bladder reaction which was same as when he had kidney stone removal I've not told Mr W yet as in addition to all this he is awaiting removal of Merkel cell carcinoma on his scalp I'm going to message the consumer and ask him to explain Sorry for long post but I need to get my head around things so I can support Mr W I struggle as he is fit and well appetite good not tired or in discomfort He has recently planted 75 sweet peas and made a frame for them put up a new bedroom light fitting and.replaced a kitchen door Hoping the consultant can clarify issues the letter raised x
Thanks I'm so glad I've practiced yoga for over 30 years it's helping me to stay a little more grounded We are seeing the consultant privately as when my husband retired we opted to continue to pay for private health care Mr W's bladder cancer treatment was carried out on the nhs on the advice of our GP Whilst I couldn't fault the medical care the admin side was a nightmare I had to keep up continual pressure to ensure Nice deadlines were met Accommodation in 24 bed wards in a hospital that was once a workhouse and had acro props supporting exterior walls and severe understaffing atrocious food wasn't conductive to recovery Our new GP who replaced our previous retired GP gave Mr W 4 lots of antibiotics and told me I was being hysterical when I mentioned a 2 week referral when blood continued to appear in his urine That was when we decided to go the private route It has been much.less stressful until this letter today I've messaged our consultant and told him of the distress he has caused and I'm awaiting his reply xx
I messaged the consultant and today received a grovelling apology profoundly sorry for distress etc Spelling mistake in original letter Letter noe reissued Kidney has been replaced with skin Yes correct Mr W is having investigation for newly diagnosed skin cancer To me a spelling mistake is a wrong letter used in a word or letters transposed Not a totally different word To say I an angry is an understatement incandescent is bearer the mark Our consultant obviously hasn't seen the letter but at our face to face in a couple of weeks I shall be making him fully aware of what has gone on I'm hugely relieved naturally but the stress of the last few days has been enormous Something I'm sure you will empathise with
Love Wilbert x
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