After months of pretty bad news over my bladder cancer which is high grade and had spread to the inner linings of my bladder.
I was told I could not have BCG anymore and that was gloomy news.
I have an appointment tomorrow for a new three bladder cancer BCG Treatment.
I was surprised I was having this treatment.
I rang my cancer nurse today to ask could I have an earlier appointment tomorrow as 3 PM is a very bad time for me - Point being I asked the result of my biopsies as I had never been told.
She said "Your cancer is a little bit less high grade, that's why another chance with BCG..
At best and I would settle for this, would mean BCG every 3-4 months followed by a Cystoscopy or TURBT.
Why was I not told before by my consultant !!!
This is not a cure but it's at least good news, I remember after my first TURBT my cancer was 'superficial' then changed to high grade - But as I say, this is better news than I had hoped for.
My heart - I have Angina, AF and a leaky Mitral valve and Aortic valve. - of late my AF has been much worse - Having a quiet drink watching Netflix with Anne - it started worse than I have known, I did not sleep at all Monday night and this worsening has gone on for weeks.
My mitral valve last checked was mild. my Aortic valve had moved to moderate, and that can affect AF/irregular heart beat.
So made an appointment with GP for a week Tuesday, and she will probably organise an echo -
So that's an update on two of my worse conditions, sorry for long boring post,
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Ern007
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Thank you Bernardine. My GP would but I have had a lot of different answers from hospital. I went for a BCG last year and was sent home without, I have had treatment since and I think this will be OK -- Now I will look forward to next op to see if this lesser grade continues. I started of with low grade, then went high, now lower. I may know more tomorrow
Thank's Carole - After this treatment will follow with Cystoscopy in the New Year, AF is a nuisance it's worse than usual that's why I have made an appointment with GP - She will do the tests that is needed - I have not seen my Cardiologist for years.
I am thinking and hoping you are doing OK Carole and Pete. xxxx
Good you have a date for February Carole - Good they are not pushing to see you. I probably will have my cystoscopy to see how this BCG has worked.
I will be rooting for you Carole,
I see my GP a week Tuesday - I could have got in earlier but I wanted my GP. She probably will send me for an echo and that 's good, It hurts a bit with prodding, but well worth it.
It wasn’t a boring post at all. The news was good about your bladder cancer, although I agree your consultant should have given you the results. Hopefully your gp appointment will be positive.
it’s definitely not boring. I’m glad the cancer is better than you expected. Hopefully you will also get some progress with your heart problems. Wishing you all the best with your appointments.
I knew you had several before but wasn’t aware it was 9, and also knew a bit ago you said they would not do anymore so happy to hear they are now going to do further treatments.
And never think your posts are boring. If someone doesn’t want to read that’s their decision but many of us are following along.
Hi Ern, as others have said, your post isn’t boring at all. I’m very pleased to learn there’s been some improvement regarding your bladder cancer grading.
I’m sorry to hear the AF has upped a gear though. You have my sympathies with that one as my AF has been what I will politely describe as “interesting” since I picked up a chest infection a couple of weeks ago. I’ve had to increase my meds to try and calm things down a bit. I hope the GP can organise an echo for you to see what’s going on and get you some help with that.
All the very best for your appointment today. I hope all goes smoothly x
Thank you Threecats, I am glad with the good new, 1st time since I was diagnosed, AF - I probably will get an echo, seeing GP soon and she sends me, consultant, Why is he now? She gets things done x
So glad you can stay on BCG, Ern. What's boring about this? Nothing at all! Really important stuff, and important we say what we need to on this great forum. Many imperfections with NHS right now, and I completely understand your frustrations, but please look at the bigger picture and let's all be thankful that you have been put back on the bladder cancer treatment. Wishing you best of luck. xx 👍🙂🙂
Prayers....but I do know people with leaky valves who lived to a very old age. A smartwatch can tell you of any heart issues and alert you also and they're inexpensive.
Thank you Sharon - I have one valve moderate and one mild at last echo, I have made appointment so soon know, Just got back from BCG treatment, she told me just 6 more and that's it, I think maybe cause they are pretty toxic. I am getting a watch Sharon, I have Oxometer which gives just basic,
It was not boring at all. It was very informative for me, so thank you. I had an ultrasound two weeks ago and am still awaiting the results. Having a CT with dye tomorrow and a cystocostapy on the 19th December. So doubt I'll get the results before Christmas. Results before then would be great whatever they are.
I wish you well and please let me know how things go
Thank you. Yes I recognise the tests, I had a CT with contrast, they a Flexy Cystoscopy - (home same day_ - The Flexy showed the tumour - Then I had a TURBT where they get rid of tumour and do biopsies, that's a 24 hour stay, - Then you will see consultant (if same as me) and your treatment plan will be given to you. ,,,,,,If you need to know anything, just ask Good Luck
Good morning Ern007. It wasn't a long boring post. I am sure it's of benefit to someone with what you have said. I am pleased that the information is better than you expected and hope you are still enjoying life the best way you can. Take care. Brian
Thank you Brian, the news I got was what I never dared would happen, I have just 5 more BCG, then I will just me monitered, It's a step forward, instead of eternal back stepping.
Hi Ern, thanks for keeping us all updated and no it's not boring in the least! Pleased the cancer news is a bit better than expected. Hope all goes well at hospital and you get a better time of day 🤞. Keep us posted of your visit when you feel up to it and good luck with GP's appointment next week 🙂❤️xxx
I was at hospital today Nula2 and had another BCG, I have then 3 more then that is it. It's not cured the cancer but it really has give it a bashing. I had a German Vaccine today and unlicenced, not really bothered I seem to tolerate, xxx
Hi Ern, so glad you keep us posted, definitely not boring. All of us with health problems especially care about how our HU friends are getting on and the outcome of their treatment. So pleased you can further BCG treatment and hope it helps. Sorry to hear your AF not so good 🤞the echo. helps with throwing light on why the AF has gone haywire. Thinking of you and sending🙏and hope. Joy xx
Thank you Joy, I think my AF is worse because I have two leaky valves, ECG soon and GP a week Tuesday. I am finding hard to sink in, I am a 1 lesser grade, xx
Thank you - I went for BCG today and nurse told me I was no longer at highest grade, I am allowed two more treatments counting this. I had to have a none licenced in UK treatment from Germany xxx
It's not a boring post I'm pleased to read how peaple are doing and reading when peaple are concerned or want hear about experience s and hopefully can offer some experience s from myself and sometimes we just need to talk to some one who understands cause not everyone does that's why this forum is a god send you're posts aren't boring to anyone take care
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