Bit of a shock

Today I got a letter in the post to tell me I have carcinoma of the bladder...the shock was to get my biopsy result in a letter although I had been preparing myself for this outcome.  So I am not surprised.  But being a woman and a non-smoker it is strange and it was a gynaecologist who did the cystoscopy 10 days ago.  I am now to see the specialist cancer urology team tomorrow.  My problem is that for many medical reasons I am reluctant to have any heavy grade chemo as I am not the most robust of people at the best of times and I have been functioning at well below normal even for me for months.  Hopefully tomorrow I will know more about stages and suchlike.  It has not helped when people reassuringly say that there are some good treatment regimes for this as I may not be able to tolerate them.

Just a little handhold would be good!  

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    Hello Heavensent,

    A very warm welcome to Cancer Chat. I am so sorry to hear that you got this news by letter. There is no good way to give news like this, but the majority of doctors still prefer to give the results of tests face-to-face.

    I have had two bouts of primary breast cancer and am currently undergoing further tests for skin cancer. Waiting for results is always a scary time. You don't have to have chemo if you don't want to. Your oncologist can advise on what s/he thinks is best for you and if, you cannot tolerate a particular form of chemo there is always something else to try.

    When I was first diagnosed 8 years ago, I was advised to have radiotherapy, but, due to some admin errors, this never happened. I took Tamoxifen for 1 year. When the second cancer was discovered, I had a double mastectomy followed by Letrozole for 6 years.

    I do hope that you can tolerate what is considered best for you and that it does what it is supposed to.

    Plerase let us know how you get on with your results. We are always here for you whenever you want to chat.

    I shall be thinking of you tomorrow.

    Kind regards,

    Jolamine xx

     

  • Hello Jolamine

    It was lovely to wake up (will go back to sleep I hope) and see your post...thank you.  I, too, have had breaat cancer (nearly 5 years ago) and opted for a mastectomy so that I didn;t have to have any radiotherapy...no recurrence and no Tamoxifen out of choice.  These were tough dicisions as they went against what was advised but it is great to feel your support for doing what is best for me,  I might get a  surprise and find out that 'surgery only' is an option.

    At the same time there is a question of something strange going on with my lymphocytes!  I am sorry you are having another worry about it with your skin and hope there are solutions for that too.

    Take care

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    Hi Heavensent,

    It is always tough to take a stance against advice given for treatment, but you have to be happy with whatever treatment is offered and to feel that it gives you the best chance possible.

    I hope that you can find out what is going on with your lymphocytes. Did you find out any more when you saw the cancer urology team yesterday and is there anything further that can be done for you - hopefully something that you can tolerate? Have you now got your staging?

    Here's hoping that there is an answer to your problems without compromising your tolerance.

    Kind regards,

    Jolamine xx

     

  • Hi Jolamine

    Well, even more of a shock in a good way as, when my daughter and I went to see the Macmillan specialist nurse on Tuesday, not only had the resection already been done (during the cystoscopy) but it was stage 2 and non aggressive so my hopes came true.  But 24 hours of roller-coaster and now I have to have repeated cystoscopies every 3 months as it is something that can come back.  I have to say it was remiss of the surgeon not to tell me this in his letter and not to ring me up or have me in but, well, the outcome is good so the next step is to get rid of the catheter.

    As for the lymphocytes...I have the form for the repeat blood tests and if I can face the snow I will have that done tomorrow.  

    How are you getting on?

    Take care

    Heavensent xx

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    Hi Heavensent,

    This all sounds about as good as it gets. I'm sure that you are mightily relieved. It is reassuring to know that you are going to have regular cystoscopies to ensure that there is  no recurrence. It was indeed remiss of the doctor not to inform you of this in his letter. If you can try to let him know this so that he learns something from your experience and will adapt his protocols accordingly to prevent other patients from the additional anxiety. I am sure that you will be delighted to get rid of the catheter. Was there any mention of doing this at your appointment?

    Did you manage to brave the snow today to get your bloods taken?

    My BC is fine - just waiting to see whether or not the mole on my back is anything to worry about. Fortunately, my lymphoedema nurse spotted it and I am now waiting to see the dermatologist.

    I sincerely hope that this run of good luck stays with you for as long as possible.

    Kind regards,

    Jolamine xx

     

     

  • Hi and welcome to the forum.

    I've read your updates and so pleased that your outcome was relatively positive after all! 

    It would be worth asking why you received your initial bad news by letter - this is highly unusual and frankly poor practice!

    Best wishes

    Dave 

  • Thanks to both of you...yes, I think I will get back to him, but now that he (the gynae) has referred me to urology, I won't be seeing him just yet.  I think I might write an old-fashioned letter as I really like him and I think it may have been an admin glitch because of the transfer.  But no it was very bad practice!

    I am feeling very punch drunk after all this!

    Take care