Struggling to understand where I am at.

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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.

  • Hi  . Good to know you are nearly there. I know what a long day it can be. Hope they get your bloods sorted. Make sure you take your anti sickness meds and drink lots of water. Best wishes.

    Best wishes to All,   rily.

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  • I hope you managed the treatment without too many side effects.Wishing you well.Love Jane x

  • Hi Chefski,

    My husband  (similar age ) in a very similar situation Mets to lymph nodes but 2. years post-RC (the pathology on his tumour and surrounding lymph nodes showed two nodes involved). We have not asked about the stage or prognosis, as didn’t find that helpful to know, just to focus on it step by step, read up on treatments etc.   

    Feel free to PM me. Hope you are tolerating the chemotherapy 

  • Hello thesunalwaysshine thanks for the reply, I will no doubt contact you soon but unfortunately the 1st chemo was not good for me.

    I lost 4kg in the first week was so weak that I got out of bed and stayed on the settee most days, constipated, drained, headaches. I thought I was ready for it but I wasn't (I will be next cycle) I thought I ate and drank enough but again obviously not.

    Anyway I went for my top up on Wednesday bloods were fine but after answering the nurses questions she went away for a while came back and said they didn't think that it was a good idea to do top up and would contact my team. She said not to worry as it happens to lots of people they may give me something to counteract or maybe lower the dose.

    Im still not fully back but at least im moving a bit more. 

    Plan for next cycle is to get more active, eat little bits more often drink lots of fluids and will monitor.

    Has anyone else had the same issue?

  • Yes, my husband had to postpone one cycle of gem cis as his white blood cell count  was low (I think thats what it  was, anyway). They gave him an injection to get them up again, after which he started again.

    However, slightly different from you in that your bloods were fine. What about trying protein shakes to build up strength? Ask your team which they recommend before doing this. 

    Where in the UK are you based? 

  • Im in Lancashire and will certainly be asking them what I can do to build energy, doesn't help that 2 day ago one of my sons tested positive for covid :( 

    never rains :) 

  • I’m really sorry to hear you have had such a tough time with the chemo.I hope the next cycle will go much better for you.Love and best wishes Jane x

  • Hi all its been a little while since i posted so i thought i would update where im at.

    Since i received the news that my cancer has spread ive been on chemo. They changed me from Gem/Carbo to Gem/Cis but it completely wiped me out so they put me back on gem/carbo.

    I have had a couple of day 8 deferred but have been mainly fine on the Gem/Carbo. I had a scan after cycle 3 and the results were that the lymph node that lit up on the PET/CT scan at 11mm has shrunk to 5.5mm and no signs of anything anywhere else.(other than the primary i presume)

    They have also asked if i would like to go on a trial for immunotherapy Avelumab either on its own or with another drug. Hopefully i can get on the trial and this will help.

    Ive been feeling better the last couple of weeks but im getting a little worried and didnt ask my oncologist whether or not the PET/CT was possibly a false positive as i have read this can happen and with the lymph node being classed as distant and no signs in any regional lymph nodes this is also unusual. (now dont get me wrong im not clutching at straws and trying to fool myself, i was just wondering if anyone else has had anything similar)

    Anyway like said 1 day at a time and i am keeping positive and will continue to fight.

    Thanks

  • Good to hear from you again and I’m glad you are feeling a bit better.I hope you can get onto a trial.Love and best wishes Jane x

  • Another update today saw my oncologist who reiterated the fact that the lymph node had shrunk and has now said that if its still the same after my next 2 rounds, i will have the choice of the immunotherapy trial or a cystectomy. He was leaning more towards the operation. Which was positive so 2 positive news in just over a week.