Hi , I have just been diagnosed with invasive and non invasive, had surgery last month and start BCG within the new 2 weeks. I had never had a headache up until now, and they are severe, I am tired . from a person that gets up early and never stops, such a shock and sad, my mind was saying yes and body saying no.
I am trying to tell everybody that the cancer is just like a big virus and I try and laugh it off , but thats my mechanism of dealing with this.
If any is upbeat and can chat to me about their own experience, I would love to hear from you.
Hi @MarkT and welcome,
I've just sent you an email welcoming you, but it also contains some information about our Connect program that I think will be very beneficial to you, so please have a read of it.
Can anyone else here offer some insight into what Mark is experiencing right now?
I had bowel cancer that when on a holiday in my liver. I'm post chemo and waiting ....... for nearly a year and its so hard but you have to be positive.
I saw in a different way to be positive. My mind is fine and my body is being attacked by something that was not invited,and then its off on a holiday around my body like a scenic cruise.
A little crazy I know, but it helps.
Thankyou for your message, I am telling myself that I just have a virus, like the Flu and I am in control and will get better.
funny is that I know what happens when I get the flu and the symptions, but with my virus, I just finding it so unusual , out or character .
My mind says go and body says no some days and others I am fine, have recognised that some days I am great and the next I crash , so yet again all a learning experience and understanding balance is paramount.
Yet again thank you.
i also have low invasive bladder cancer. I had a 4cm tumor removed early 2017, after I had blood in my urine for over 9 months.i was travelling extensively with my wife and who had time to be concerned. Not me at the time.
Anyway, I have been back every 3-4 months for the cystoscopy and each time a small cancer has returned.
they are wanting for me to try the BCG treatment, however, I am unsur at this stage.
have you tried it as yet? Side effects?!
love to hear how you are treating your bladder cancer. Are there other options?
Mine is both invasive and non invasive.
I have just completed my 6 weeks of BCG and now awaitng my next surgery .
The BCG was relatively easy, of sorts once they provided some much needed pain relief, Van and Endone.
side effects lasted a few days , immediately after and other times, side effects came on 4 days after.
My side effects have been harsh and I cant lie, as I am normally very active , Fatigue, Severe Headaches , urgency to urinate and blood. weight loss and then put of weight.
I now know why they called it a journey.
Not sure where you are located , but be guided by your surgeon and oncologist.
I wont know much more for at least another 6 weeks.
I am more than happy to discuss.
thanks for replying. I don’t have an oncologist as yet. I am going public, so my doctor changes every time.
i had an original surgeon, however, now he has left us (paid to have urgent surgery, once I said I don’t have private healthcare, he vanished).
I am based in Brisbane, live northside, Work Southside.
I am not liking the sounds of the side effects. I have no other symptoms at this stage and I am only concerned that those things you have experienced are knock on effects of the BCG.
DID YOU LOOK INTO any other treatments or suggestions ?
Good morning , I didnt look into other treatments and was guided by my Urologist whom placed me with an Oncologist in Sydney and yes I am under Private Health.
I was advised by some friends to never use Dr Google to do any research as some can be sketchy , however I did look at Mcmillan in the UK and I placed my total trust in my team in Sydney.
I can say that side effects can and will vary with every individual , I had some where others were different.
Obvsiously I am only at the start of my cancer treatments and dealing with this awful virus ( as I refer to it ) , so more will be become apparent in a few weeks time and happpy to share .
Maybe find out if BCG is under the PBS . I can say our medical system is amongst the best in the world and I would be , so suggest talking to your doctor and asking him for information about the public system.
If you would like to talk on the phone at any stage I am more than happy and I can say treat every day with happiness and dont let this beat you.
i appreciate your feedback. I had some info sent through FROM CANCER COUNCER and I looked further into BCG. Just last week I went in for my quarterly checkup - and there is still some cancer in the bladder (this is my fifth checkup, each time showing a very small growth reappearing), so in six weeks, back in to do general anaesthetic and have it removed (once again). As I am public, each time a different doctor. This young doctor, whilst having the camera inside me, really grilled me about having BCG. It was quite awkward to be bullied into BCG by a doctor when in a vulnerable position. I said to him I am skeptical, but still researching about the side effects around BCG. After reading the information that it is a six week course, and the catheter (had that only once before, what an awful experience that was) I want to find out about the possibility of options, particularly around natural therapies.
Did you find any possible alternatives available?
I know you are in the middle of your treatment, you offered to talk on phone, I think that might be a great idea.
send me your phone number and let me know best times to call.
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