New here Newly diagnosed

[cazy-g]

Hi all ,I am a female just commencing treatment for bladder C. The outcome of first procedure was that I had a grade 3 tumor which at present is non invasive but in the outer layer of my bladder (not in muscle ),This was removed via turb and follow up treatment is imminent I.E a further turb to biopsy and then a treatment plan. B.C,G has been mentioned .I was wondering if anyone on here has a similar diagnoses and did the proposed treatment result in a positive prognosis .I am anxious re the outcome and would refuse any major surgery should it develop further Any response and experience would be much appreciated

[PaMul]

Hi crazy-g

Welcome 🙏 to the site. There are a lot of folk with experience of BCG who I’m sure can answer questions. I’ve been having Mitomycin until now but that change depending on the results of my upcoming TURBT.

Best wishes and hope you’re recovering well

P

[cazy-g in reply to PaMul]

Thankyou ,this forum will help re information .I have an additional dilemma re B.C.G as I am immune suppressed due to another condition and treatment for that .B.C.G is a live vaccine and wont marry well due to this .I am looking for others experience of the effectiveness of Mitomycin as I will have to make choices down the line .Thanks for your good wishes

[Allyp69]

My husband has bladder cancer but he has just had BCG treatment ...Every patient is different and you need to discuss treatment with your consultant...My husband is in remission after 4 years..Wish you all the best with your treatment.

[cazy-g in reply to Allyp69]

Thankyou ,the consultant has put my options on the table and I am hoping to make an informed decision when looking at other sufferers experiences .Hope all goes well for you and yours l

[Letterhead]

Hello and welcome. Although horrible for you it’s good to hear from another female experiencing this, Im nearly always alone when I go to the hospital! If it’s any help I was diagnosed 9 years ago. Have had several TURBTS and major surgery to reposition my ureters 8 years ago. I started BCG 3 years ago and have been clear since then. Hope this helps, if you need anymore info I’m happy to help.

[cazy-g]

Thanks letterhead ,yes females are in a minority I feel ,the major surgery bit worries me and hopefully will not transpire in my case but it was mentioned .All a little scary just now ,may be in touch in the future .Hope you stay well .

[PaMul in reply to cazy-g]

Hi crazy-g

Indeed with other conditions that may be effected by live vaccines you will need to weigh everything up.

Good luck and keep us posted

[Anniemouse]

Hi crazy-g

I have had BC for some ten years , only the last few have been a constant recurrence. I had Mytomycin with no effect and three TURBTS , now on my third dose of BCG three to go before i have a check up ....... praying it works as the options of surgery are not good as i am a complicated case (quote from my consultant) I have Crohns disease too. so a live vaccine is a bit scary but no other options that i am aware off .

I know its hard but try to stay positive and keep chatting to people who are going through the same experiences. I find it helps to know i am not alone...... I sit in the waiting room every week and find i am the only female too

Good luck x

[PaMul in reply to Anniemouse]

Good luck to you Anniemouse. How are you managing the BCG? Side effects? I fear it may be coming my way with my current 4 recurrence. Op on Tuesday so have to wait for results.

Best wishes to you both and good luck 🍀

[Anniemouse in reply to PaMul]

Hi PaMul

Good luck to you for Tuesday

BCG for me is going ok , no side effects as such . Little tired but nothing else .

so fingers crossed it is working ,

Let me know how you get on,

[PaMul in reply to Anniemouse]

Thank you 🙏 Anniemouse. Good to hear you aren’t suffering any side effects except tiredness. Fingers crossed it’s working indeed. Keep us posted and I’ll let you know how I get on in my next BC chapter.

Best wishes to all

P

[cazy-g in reply to Anniemouse]

Thanks Anniemouse ,it helps to know that others have similar issues and knowledge is empowering and assists in decision making re treatments .Hope your treatment has the desired effect .I am on holiday next week and to have another Turbt the week after .(I cant wait ) ha ha x

[Hobbes13 in reply to Anniemouse]

Hello Anniemouse,

I hope that you are doing well! Your story sounds similar to mine with the sudden reoccurrence, Crohns , kidney stones & visceral pain. I truly hope things are going well for you! You are in my thoughts & prayers. xo

[Hobbes13]

Hello Cazy-g!

I just wanted to say hi and let you know that you aren’t alone. I totally understand how it feels. When I was 1st told 4&1/2 years ago the doctor called me and said I’m sorry, you shouldn’t have this, your only 44, you’re female, and you don’t drink or smoke...but you have bladder cancer. It was crazy. I hadn’t even heard of such a thing. I told him he could of just sent me a Christmas Card instead! Life does change. But we become victors...right!!! I really hope that your surgery and treatment is going well!{hugs}xo

[cazy-g in reply to Hobbes13]

Thanks for your input ,so far I am now waiting for further results from second turbt and biopsy which should then give info re a future treatment plan .I am hopeful that any treatment wont get in the way of any future plans re lifestyle and travel , think warriors is a good word x

[Hobbes13 in reply to cazy-g]

‘Warriors’ is a really good word indeed!!!🙌🏻✨

[cazy-g]

Hi everyone ,here's an update re my bladder cancer experience .

I had a second turbt biopsy which has shown no return or spread of original tumor .

I am unable to have B.C.G treatment due to another health issue so have decided to take a wait and see approach for the future .I will be having further monitoring in Jan 2020 in order to check all still well .Wishing everyone optimum health