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G3 pTa bladder TCC

Jilly1
  • 11 replies
  • 75 subscribers
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Hi, new here having been diagnosed with G3 pTa bladder TCC last week. 

I have had CT scans from chest down. I am waiting to start BCG treatment which has been delayed as waiting for major hospital in area to review my chest scan at their MDT meeting, which should be this week. 

I am not new to the forum as I had bowel cancer tumour removed last February. I had a right hemi-colectomy which is basically half my bowel removed. Before this I had a lot of bowel problems/disease but have got over the op despite the other challenges. When I had my meeting with the Urology consultant we asked if the cancers were connected, she said they weren't. She wants me to start BCG treatment urgently but I have been held back by the chest CT scan. I want to get started asap and getting frustrated that it's taking so long. I'm using distraction techniques to take my mind off of it all. I have to say I am getting concerned that there may be problems with my chest. I hope there is no cancer anywhere there!

I am grateful to have caught my cancer early again, I have been so lucky. I have had a number of years of UTI's that never seemed to fully clear. I had a cystoscopy in 2019 and my bladder was clear then. With the almost constant UTI's I hadn't been out much, wanting to stay home, especially during the incontinent times so my health isn't so good at the moment. I have other health problems too and the whole thing really got me down. I had a UTI when I had my TURBT, the catheter wasn't removed until the next day and I was in absolute undescribable agony. The hospital wasn't an easy time, the recovery team were excellent but the ward staff were not. I got myself out of there as soon as I could!!

Before my TURBT I planted seeds for the garden as I usually do in February/March in the hope that it would help me see them growing and get me back in the garden this summer. It has helped enormously, being out in the fresh air, along with the recent sunshine has lifted my spirits.

I live with my partner but along way from my family, I'm so thankful for his support, he's looking after me well. I am trying to look out for him as I know it is hard on him waiting for news too. 

I am also very grateful to everyone on here, whether new or experienced in this that have shared their stories, you have already helped me so much. I know that I have waffled on a lot but it's really helped to finally get it all out here. If you are still reading, thank you, you have a lot of patience :-)

Jilly

  • Hi  and welcome to this supportive group. Sorry to hear your news after what you have already been through. Just to let you know BC can be treated successfully and BCG has a good recovery rate. Not had it myself as I went another direction but we do have others currently going through it and will be along to help. Best wishes.

    Best wishes to All,   rily.

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  • in reply to rily

    Thank you, I have been working through messages and have seen others going through the same which is all very helpful.

  • Welcome to the group. How unfair to have another cancer after all you have gone through already. I had the same diagnosis, but chose a different route. I understand the feeling of wanting to get started on treatment as soon as possible, but it's often not as urgent as we think, although I note that you say your consultant is keen to get going. If you think about it, the tumour has been removed, so now the idea is to stop recurrences. Generally a short delay will not be significant. Hope all goes well for you.

  • in reply to Teasswill

    Thank you for replying Teasswill, I am trying to be patient, I am trying to think that there are likely cases worse than mine and they require more urgent help.

    I guess one of the reasons for my lack of patience is that we'd already booked our holiday, the MacMillan nurse knows the dates and thought we shouldn't cancel it and I would finish the first course by then. Also, not knowing how I will be with the BCG is on my mind as I wouldn't want it too close. It's only for 5 nights away but we both feel we need the break away. Does anyone know if they would allow a break mid treatment if it gets delayed further? 

  • in reply to Jilly1

    Hi jilly1

    Sorry to hear of your problems. I am g3pta + cis and have had 18bcg. Had clear 3 month  cystoscopy today so next 3 bcg starting in 2 weeks then 6 months off.

    I have not had any major problems so be positive and good luck.

  • in reply to Bsk7f940d

    Thank you Bsk7f940d for your reply. I am pleased to hear that you haven't had any major problems, it's good to hear your positive feedback. I am trying to be positive, I am trying to look at it as that it needs doing so just get on with it. Even though you've not had major problems it must be good to know that you soon have 6 months off. I thought that in between you only had a few weeks off before starting again so knowing that as time goes on you do get longer breaks is helpful to know. The more I learn the more I feel that's it's going to be fine. A long road, but doable.

    Congratulations on having a clear cystoscopy, it must be a such a relief each time you hear that.

  • in reply to Jilly1

    Personally I found that getting in the right frame of mind works, it just becomes a routine and it's saving my life so I can put up with a bit of discomfort. My wife is a long time breast cancer survivor who is fine but the first year of treatment makes my bcg seem like a bout of the flu, if I complain she will stop me moaning.

    Best regards

  • in reply to Bsk7f940d

    Thank you. I have been thinking how fortunate I am, so many people have a lot worse with cancer and other illnesses. The comparison you give between your wife and yourself is very reassuring.

    I spoke to the Macmillan nurse today, she told me the chest CT scan is fine and I can go ahead with treatment starting on 19th May. The last treatment coincides with a holiday we had already booked and she has arranged to delay the last treatment until I get back. It's only 5 night away but it will do us both good to get away. We were going to cancel it but I'm glad we can still go. I'm hoping the weather will be as good as it is now. It's something nice to look forward to. I have been so much more relaxed about it all today. Now it's just a matter of getting on with it.

  • in reply to Jilly1

    Good news

    As an aside the bcg catheter is very thin compared to the cytoscopy camera and is  in and out quickly which us good for men as it has further to go and there is a prostate in the wayKissing smiling eyes

    Best regards

  • Hi Jilly,

    Well done on finding this forum. We have all been where you are and know how it feels. It is good that you are starting treatment soon and that you are having all the right tests so the doctors can be sure they are giving you the right treatment. 

    You are also quite right to be careful of your partner, they worry too and may feel there is nothing they can do. But of course we know how much support they give us even just by being there. And as you have been treated before you know all of this anyway.

    I hope you enjoy the holiday and that your treatment goes well. Im sure uou have a good team around you in hospital and home.

    All the best,

    Latestart 

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