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  and welcome to the group. I can understand why your head is all over the place. I had to read your post a couple of times to try and understand what you have been through. It seems as though they have had you going around in circles with no firm conclusion. I had six weeks of chemo which was designed to clear up any rogue cells elsewhere in my body and it halted the growth in my bladder before going on to further treatment. Didn't really have any problems with it. I didn't have any lymph node involvement, so hopefully someone with more similar experience to you will be along to offer some advice. Best wishes.

    Best wishes to All,   rily.

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  • What a shame that you have had all this indecision from the medics. Unfortunately best treatment is not always clear cut, or there may be options,  and they would avoid over treatment if not necessary. They should have explained the options, risks, benefits etc at each stage to allow you to have a say where there are options. Having said that, it is quite possible that the outcome would have been the same anyway. 

    Positive lymph nodes are not necessarily the end of the road, but do make a list of questions to ask before your next appointment, and ask for copies of all reports.

  • Hi Chefski,Welcome to the group.It sounds like you badly need some clarity on your situation.I would write down all your concerns and questions and contact your consultant.Or do you have a specialist nurse that could answer questions ? Best wishes for whatever treatment you are having next.This is a friendly group and you will get emotional support here.Best wishes Jane 

  • Thankyou all for replying and support, its so difficult as we go with a set of questions and then the whole ball game changes. I was completely thrown that it had got to this stage from a promising outlook. I don't know whether it is stage 3 as its in the lymph nodes or stage 4 because of which lymph node it is in which I think is para aortic which I don't think is regional although may be to the ureter?

    is it incurable or terminal (believe there is some difference, yet nobody at any stage has mentioned either of these)

    I just hope that they give us some good news next time as it seems to alternate every time we go. Cancer,no cancer, cancer, no cancer then this.

    I hope that once I get clarification and know what my plan is I will feel better but definitely not coping well at the moment with 2 10 year old boys I just think about them and my wife constantly (thankfully my wife is amazing and I know they will all get through some how)

  • I feel for you,uncertainty is horrible and you need some answers.Even if they don’t know exactly what is going on you should have been told that.Definitely ask to be copied into the hospital notes.On my hospital letters it clearly stated what type and stage of cancer I had.Hopefully you will know more soon.Having a treatment plan usually helps most people feel better.Best wishes Jane 

  • So I had a consultation with the oncologist and he gave me the news we expected but didn't want to accept. I have stage 4 Bladder Cancer that has spread to a lymph node aortacaval so is metastatic. a couple of other lymph nodes slightly larger but no other signs other than the primary and this lymph node. Prognosis was 18-24m which is devastating but I will not give up.

    He said that if the lymph node responds to Chemo which is going to be in the next couple of weeks then they may well look at a cystectomy for removal of the primary. Wouldn't confirm that would give me a better prognosis but I presume (rightly or wrongly) that if the metastatic nodes are removed and the primary then I know it will probably come back but may not be for some time hopefully.

    Its been a disaster from start to finish and the last 2 weeks have been unbearable mentally, I just hope I can get my head in the game to give this thing a good fight.

  • I am so sorry for you reading this, you seem to have been really given such conflicting information. I pray that you will respond well to everything they can give you and keep strong and positive, easier said than done, I know. Can you get some support from macmillan or some other bladder cancer groups. You don't want to be coping on your own. I am sure you will give this a good fight and I hope you win. 

  • Hi Chefski,I am so sorry to hear this.I hope that the chemo works and you get the cystectomy.Thinking of you and sending my best wishes.Jane x

  • Well I received my official letter yesterday from my consultation on Friday.

    I noticed in the letter that he said that I asked whether the chemo was a possibly curative and that he stated that for the vast majority of people with what I have it would not cure it. (rightly or wrongly im hoping that means not impossible)

    So im holding onto a little hope that we may somehow get through this or at least extend what we have been told.

    I also have my chemo booked for 5/04/23 so at least we have something to focus on.

  • So I am writing this nearing the end of my first chemo session.

    I was told I was to have gem/carbo as my kidney function wasn’t good.

    came yesterday to hear the news the renal test I had last week was vastly improved and so would have gem/cis which I thought was a positive step.

    then this morning had a phone call the blood tests I had yesterday needed to be re done, oh no bet that means gem/carbo. 

    Anyway I’m here getting gem/cis wit’s the last bag of fluids from what will be 11 hr treatment, still praying for a good response.

    will keep you updated Grinning