Women with bladder cancer

Hi BLANKET

Good to hear from you and to know it isn't just me who feels the same about the support being so different!  It's now countdown for me for flexi-cystoscopy on the 10th and I have no idea which way this thing is going to fall...trying to keep positive and staying in the here and now-very zen.

Not always easy but a sunny day does help. 

Thanks for the post x

Hi Blanket,

After seeing your post about your recurring bc I looked at your profile and see that my cancer grade is the same as yours G2pta. I was diagnosed in June 17 and have had three reoccurrences in the last ten months, having the latest lot removed next Friday.

Did you have any treatment in between your reoccurrences?  

At my last procedure in November, although the doctor who did my flexi requested biopsies, none were taken and no chemo wash. No biopsies at the previous one either. Both times I had diathermy.

The specialist nurse who did my flexi this time seemed surprised that I didn’t have a chemo wash and has requested biopsies, chemo wash and to consider further treatment to stop it reoccurring. Of course it will depend on the surgeon on the day who is a different one every time. 

Just wondering what your experiences have been. Not sure I can cope with reoccurrences every 3 months!

Thanks Luce x

Hi again MaryQ

I'm in for my rigid cysto on the 4th, they just launch straight into this now so I don't have to go through the flexi.  It's not a bad thing really as it's gone before I even know it's there, & it saves me all that stress of thinking that it's back, again .....

It's a very difficult time I know, & so exhausting thinking about it all the time.  I've finally accepted that this is now a part of my life, I just got sick of the worry & felt that I could do no more.

Let us know how you get on, take care xxx

Hi lucylaw

No, I don't have any treatment as I had an allergic reaction to the Mitomycin C, my bladder itched for a whole week!!!!  I've never been offered BCG, although I understand that it's for higher grades.  To be honest I wouldn't be keen on it anyway, unless things changed.  

My Uro ain't the chattiest person in the world, but to make up for it I do have a wonderful nurse who always has time for me.   I asked how they would know if it was cancer if they hadn't biopsied.  The Uro said that it would be cancer, perhaps he has a trained eye or something I don't know how he would know without the biopsy.  The nurse said that some tumours may be too small to biopsy, or they just don't always bother with a biopsy.  Also anything in the bladder has to be removed as it shouldn't be there, plus if it's not cancerous it could turn cancerous if not removed.  They cut off the larger tumours & diathermy the smaller ones.

I used to be every 3 months, then I got promoted to 6 months, WIPEEEE!  The reason I got the promotion was because when they looked after 3 months there was nothing there.  Then another time they biopsied & it was none cancerous.  Apart from that there's  always been a recurrence.  Although last time they didn't see me for 8 months.  A different Uro did my procedure & he biopsied.  

All the best for Friday Luce!  xxx

Hi Blanket

Thanks for your reply...I am assuming that you have a GA for the rigid cystoscopy?  I have a similar problem with all kinds of drugs etc so I would opt out of any chemicals in my bladder but I know that if this comes up at any time I will have to hope they understand.  I have had to go against the normal route before with my breast cancer and fortunately there are others who have to make independent decisions, but it is quite hard to do.

Because of this the prophylactic antibiotic I am given cannot be one of the usual drugs that are used.  All adds to the stress but for the last couple of weeks I have been able to have a bit of relief from bladder-focussed stuff thank goodness!  It does seem that doing it your way there isn't that wait between knowing something is there and having it dealt with...

Good luck on Thursday

Take care xx

Hi MaryQ

You're welcome 

Yes the rigid cysto's done under GA.

When I had breast cancer the Herceptin was causing my heart to fail, the red dye from the CT scan caused anaphlaxis, as did an antibiotic I had for a UTI, then there's all the strange stuff that happens after treatment, that no one told you about.  Although I can understand, as having cancer alone is probably one of the greater shocks in life & that's without them telling you what could happen after you thought it was all over.  So it's certainly a difficult one knowing whether or not to have treatment.  I was too scared not to have treatment to begin with, but 10 years on I'd refuse unless it was lifesaving.  

Thanks.

All the very best to you xxx

Hi Blanket,

Thanks for the information. it looks like mine could be a regular occurrence as well! 

My problem is that I haven’t seen my consultant since July 17 and trying to get hold of a nurse is difficult. 

I can tolerate mitomycin so possibly they will suggest that but we will see.

Thanks for your good wishes.

Luce XX 

You're welcome Luce  

I realised that mine was here to stay was the time there was nothing there, & they told me that they were shocked by this.  A recurrence is not what you want to hear but you cope, eventually.  

Would you be able to ring the consultants secretary & speak to her?  If you ring the hospital they should be able to give you a number.  I had the same problem with not having anyone to speak to.  When I rang the nurse up to begin with after the procedure (I usually get a UTI) she said that if there was any problems I was to go to hospital, she wasn't pleasant at all.   Eventually I got to speak to one of the other nurses who's a Urologist & a Macmillan nurse, she's lovely, & would talk to me, which sometimes is all you need.  

I tolerated the Mitomycin rinse after quite a few  procedures, but when they started me on the 1st of 6 where you have to hold it in the bladder for an hour, that's when I had the allergy.  A few people have mentioned BCG to me, but I think due to previous allergies I wouldn't be keen, I told them this too.  

All the best xxx

If they don’t do biopsies on Friday and just mark me for a 3 month review  I fully intend to ring my consultant’s secretary and make an appointment. I realise ( and hope) that it is still low grade but I suffer from really bad anxiety and having to go in every 3 months really makes it worse, beside making it difficult to make holiday plans and get travel insurance cover.

Thanks for your advice  it really helps to know that I’m not on my own. The nurse who did my recent cystoscopy was  lovely particularly when I told her the problems I had contacting someone and told me to ask for her so I can go down that route too.

Best wishes xx

Hi Luce

I really sympathise about the anxiety around all this...and the need for support.  I agree about phoning the consultant's secretary and I don't know what I would have done if I had to just wait for contact.  I ring if ever I have a question and she is really good...I wonder if you have been offered any counselling/psychological support.  I see an amazing oncology psychologist as both cancer diagnoses triggered off dreadful hospital terror from childhood.  It has really helped so much to understand why I feel like that and that it is normal and ways to help me deal with it.  If you think about it, it is not an everyday thing to have someone put a tube into your bladder to have a look round! 

I am really sorry that you are feeling so much anxiety and send a big hug [if you like hugs!] xx

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