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I had my first 3 month cysto follow up. All Clear. Learned that my tumour was non invasive – high grade. Uro indicated no other treatment unless recurrence.
John
Hooray, hooray, hooray for you John!
I am heading for my 6th cysto on Thursday and still waiting to have an “all clear” one yet. All my tumours have been non invasive but have gone from low grade to high grade. Doctor says “don’t worry”. Ya, right.
Anyway, really enjoy your good news John.
Take care
Hi John
Congrats on the all clear!!! A little surprised your Uro is not recommending BCG treatments since your diagnosis indicated high grade, which is the normal treatment recommended by both the Canadian and American Urologist Associations.
All the best,
JackHello John
I agree with Jack and Jack really knows his stuff. Have you considered a second opinion? BCC can help with a referral to another doctor.
My uros (have been rotated between 4 of them and they all work as a team) are all of the same mind: BCG is the key for non-invasive.
Don’t be afraid to ask questions and seek other opinions. It is your health not the doctor’s and you need to be the one in control of your health.
FYI: I don’t hesitate to phone my uro’s office and ask questions and they don’t mind at all. Even the staff will say that it is my health and I am the one that needs to be in control of it.
Take care
Hi John, great that your first cysto shows an all clear! Certainly a good sign, but as the others here have said, I would certainly push for more regular follow-up before waiting for more symptoms. Once symptoms are present, the tumors could have a good head start in your bladder. None of us like the idea of having to go for regular cystos and BCG treatments, but if it means keeping those nasty tumors out, then its’ more than worth it. Please don’t let it lie there without having more follow-up. You only get one bladder; try to keep it as long as possible.
Good luck with it.
LorraineHello John
I agree with Jack (but then I usually do because he does know what he’s talking about, except when it comes to golf). I’m surprised no BCG treatments with high-grade bladder cancer. I am also located in Calgary and only got 6 BCG treatments following my TURBT. The standard is more than this.
I would recommend getting a second opinion, I did with a urologist outside of Calgary after I had a reoccurence. He gave me 13 more BCG treatments and thank God, I am now 5 years cancer free.
As Jack says BCG = Bladder Cancer Gone.
Hello John
I have seen all kinds of treatment criteria on this forum. No wonder why BCC talks of standardizing treatment in Canada.
Have read/know of everything from no BCG to one round of BCG considered a failure to 20-30 treatments and even 51 treatments.
For myself, surgery followed by 6 BCG treatments then surgery again and 2 sessions of 3 BCG treatments each then surgery again and 6 BCG treatments. Cysto #6 was finally an “all clear”. If my uro had considered the first set of 6 BCG a failure, I would now be living without a bladder.
I really wonder if some uros hit the panic button way too soon or is it possible that some uros do not have sufficient experience with BC? Regardless, it isn’t the uro dealing with BC and possible loss of bladder so maybe they can be a little too cavalier about it. I can’t be and no one else with BC should be.
Take care
Hi John:
I too, am from Calgary and had the same diagnosis – non-invasive but high grade. As the others have said, I would now knowing what I know about BC, be querying the no treatment regime. I know that there is still a bit of a BCG shortage in Calgary and maybe that could cause a delay for the start of treatment but there are other drugs out there like Mitomycin C that may be an alternative.
I had 6 BCGs in 2008 following my first TURBT and then 15 following my reoccurrence in 2010. It was a set of 6 followed by 3 sets of 3 (once a week for 3 weeks) at 3 months, 6 months and 12 months from the date of my first treatment in the set of 6. Uros really do vary on their protocols. There could be many reasons for that in addition to a BCG shortage; patient health – other health complications, the actual diagnosis, how often someone is reoccurring etc. and of course the uro’s opinion and their actual experience with BC.
High grade cancer is serious business. My first uro told me that I could leave well enough alone and not do treatment if I chose, but he said if I did I was in real risk of it going invasive should it reoccur. That was then that I realized this cancer has a high reoccurrence rate. That was later confirmed when I joined Bladder Cancer Canada and read people’s posts on the forum.
The original set of 6 kept me cancer free for nearly two years. I only had one very small non-invasive high grade tumour upon reoccurrence and am now starting into my sixth year cancer free after the 15 I did between November 2010 and January 2012. Even though it was a tough struggle with a lot of heavy duty side effects, I’m now glad that I put my big girl pants on and powered through. Keep in touch and let us know how you are. (((((HUGS)))))
Hello John
In my research and reading of literature the hospital gave me, I am under the impression that the protocol for non-invasive is 6 BCG treatments, scope and if all clear then go on maintenance of 3 treatments every 3 months for the next 2 years then 3 treatments every 6 months for a year.
Yes, there is a BCG shortage across North America and in the UK. Still, it is your life. My uro has proceeded with full BCG (option is to do 1/3 dose during the shortage) and full sets of treatments. The hospital has been able to procure required BCG each time.
Again, I can’t emphasize enough: it is your life; take control of your health. Get a second opinion. I bet, if the roles were reversed and it was your uro with bladder cancer, he wouldn’t go without BCG treatments.
Take care
Hi,
Reading all of these responses as got me thinking a lot. I, also had a non-invasive high grade tumor removed this year. It was removed back in February. My uro then scheduled me for a first set of 6 weeks of BCG treatment (which I had in April-May). Then, he wanted me to have a booster (set of 3) of BCG every 6 months for 3 years. To be quite honest, I was angry and didn’t want to do it! I didn’t really get how serious the small, little tiny tumor I had was… Really, when I saw it on the screen, it looked like a flower. The doctor just plucked the flower out of my bladder and it was over… wasn’t it? Now, I’m reading all of the comments above here. I would’ve loved to have had the same message as you had John. No further treatments… I guess now that I think about it, I am thankful that my urologist is being aggressive with the treatment. I was lucky that my tumor was discovered so early and now I have to make sure it doesn’t come back. My urologist said to me that he sees the cancer come back too often and since my tumor was high grade and I am so young, he wants to make sure that he never sees it come back. As much as I may still get angry about going through the treatment, I guess I’m starting to feel thankful that my uro is being aggressive with the treatment.
Good luck John.
Hello Az
BCG treatments are really your best friend. I know, they are annoying to have done and so much for personal dignity during the process. In the end, though, a few minutes of annoyance in exchange for the rest of my life isn’t such a bad trade. I’ll take it any day. Thus, I look forward to the treatments. Means I am advancing in the attack on the BC and not sitting around doing nothing.
Az, sounds like you were initially in the denial stage. Everyone goes through the stages and, if you haven’t read up about them you can on this site under the “facing bladder cancer” tab.
When my BC went high grade this spring (still non-invasive), the uro put me back on 6 BCG treatments to be followed by 3 boosters every 3 months for the next 2 years. As long as there is no recurrence. Just had my first all clear cysto in September which was awesome! Won’t be surprised, though if there are ones in the future that are not all clear. It is the nature of the disease. As long as they stay non-invasive, I am happy. If they ever go invasive, I will deal with it then.
Take care
That is great news John. 2yrs of 3 mos cystos is normal protocol. You will probably have 2 to 3 yrs at 6 mos intervals… I’m at the 6 mos cystos now.
Congrats on the all clears…wishing same going forward.
God Bless.
Rick
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