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High Grade – non invasive – Cysto following First Round of BCG
I thought to share some good news
Cystoscopy after my first 6 BCG treatments this morning. A couple of ‘zaps’ to take care of some tiny satellites and I am clear. Looking forward to my next round of maintenance BCG in six weeks.
Keep healthy diet, exercise is a must and more importantly think positive. This is what my life will be from now on but I am grateful that something can be done and having such a good medical team.
Keeping positive thoughts for all of you!
Ginette
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18 Replies
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Has my 2nd BCG treatment today. All went well & no side sffects except burning when urinating. I have read sooo much on BCG & still confused on what to expect after week 6. Doc said I’ll also have a cystoscopy & possible biopsy couple weeks after last BCG. Guess I’m looking for good news outcome from actual patients
Thanks
Dennis
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Dear Sara,
Thanks for the explanation about mitomycin in its dual function. You’re such a diamond for us!
Bladder Cancer – Non-Invasive 2019
High Grade – T1
2 TURBT – 2019
9 BCG Infusions – 2019
Ureter Tumor Discovered – 2021
We may be confusing two different uses of mitomycin here . Often a wash of mitomycin is used after a TURB as a sort of preventative for any possible spread of cancerous tissue due to the procedure. In this way it is being used as a chemo agent .
However it is also used to stimulate the immune system in the same way that BCG does. Mitomycin is used when BCG is not available or when it has been ineffective . Studies have shown that BCG is usually more effective than mitomycin when used in this way .
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
I have had two TURBT and nine BCG infusions. During my second TURBT, I was not given an infusion of mitomycin. This was different from my first TURBT wich included both scraping and a mitomycin infusion. I believe mitomycin is a chemotherapy treatment and BCG is a immunotherapy treatment, and the treatment approaches are different.
Does anyone know the historical effectiveness of mitomycin? I changed urologist and started receiving treatment from UCSF between the two TURBT treatments, and my UCSF urologist told me mitomycin was not necessary since I was going to get BCG infusions.
Bladder Cancer – Non-Invasive 2019
High Grade – T1
2 TURBT – 2019
9 BCG Infusions – 2019
Ureter Tumor Discovered – 2021
Last year there was a shortage of BCG and it was unavailable. In its absence many urologists needed to use mitomycin, which is not quite as effective as BCG (which is the “gold standard” for treatment of non-invasive high grade bladder cancer.) Most urologists are now able to obtain BCG. You might want to a ask your urologist why he/she as not obtained a supply for patients such as you.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Had my 1st treatment today. All went well except I leaked after approx 80 minutes.
Looks like 1 hour is the minimum & doc said I’m ok. The treatment was with Mitomycin instead of BCG.
Can anyone advise why they would give me Mitomycin instead of BCG ???Thanks
Dennis
Thank you that info really helps. Very scary time & support from this group is great
Thanks again
Dennis,
Welcome. While low grade is always better than high grade, non invasive (stage 0 or 1) is certainly better than stage 2(muscle invasive) or higher (3 or 4). BCG as immunotherapy works for the majority hyping up the immune system. The good news is for most that will be the end of our bladder cancer problems. I have been free almost 12 years, so there is a lot of hope. While it is not a cakewalk BCG is doable and certainly better than systemic chemo that most cancers are used in treatments. Feel free to explore further on the web site for more explanations on staging, treatment etc. Keep posting if you have more questions.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Hi my name is Dennsi . I had my 1st turbt yesterday & go for my BCG tomorrow & then the 6 weekly treatments & follow up scope in 3 months. I am struggling with diagnosed as high grade vs low grade. Dr told me non invasive is good news & high just means it may come back sooner. He said this is good news. I had no symptons & the non invassive cancer was diagnosed as high grade not low grade. My cancer was detected on CT done for kidney stones. Can someone please share their experience & good news
Thanks
Dennis
NelsJenn, I’m pretty much where you are with course of treatment. My side effects were fever, urgency, and stinging with urination. I drank a lot of water and fortunately most of the side effects had subsized within 24 hours. But those 24 hours were might uncomfortable I have to say.
Thanks Alan for the response! You continue to be an anchor for me through this process. Regards.
Bladder Cancer – Non-Invasive 2019
High Grade – T1
2 TURBT – 2019
9 BCG Infusions – 2019
Ureter Tumor Discovered – 2021
Check yes to most of your side effects along with I did not have swelling in the feet nor loss of appetite.. They will subside, some faster than others. It does sound like you are close to either cut back the strength or stretch them out later. NOTHING says you MUST finish any program as everyone reacts differently. Keep in mind this is all easier than systemic chemo.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Dear Canadian1,
I believe I am at the same point in this BC process. I, too, went through two TURBT, six initial BCG infusions, followed by a cystoscopy which determined that I was cancer free, another three BCG infusions, and I am going to have another cystoscopy on Jan. 6th.
Congrats on your progress with this BC treatment process.
I am concerned about what I have been experiencing lately, and I am wondering if anyone had a similar experience. Below are the symptoms that I have been experiencing.
My urination frequency has increase (I urinate about 3-4 times a night), but the volume of each urination is about 4 oz/urination. If you add up the total volume, I suspect it would equal my normal amount of urination.
I am used to higher volumes of urination, and I don’t believe this change in urination is due to dehydration. I have urine test strips, which measures specific gravity, and my SG reading falls between 1.010 and 1.020 which is normal.
Below are additional symptoms:
1. Blood in the urine – My urine test strip indicates no blood in my urine.
2. Pain/burning sensation during urination – I do feel a slight tingle while urinating. Pain level is 1 or less (on a pain range of 1 to 10).
3. Weak urine flow – My urine flow is on the weak side, but I can push and increase urine flow.
4. Urgency to urinate – When I feel the need to urinate, it is urgent even though I only expel 4oz.
5. Increased urination frequency – My urine volume per urination is low and my urine frequency is around 3-4 times per night.
6. Pain in the lower back or pelvic area – I don’t have this symptom.
7. Fatigue – I don’t have this symptom.
8. Swelling in the feet – I don’t have this symptom.
9. Loss of appetite and unexplained weight loss – I don’t have this symptom.Has anyone experienced the above symptoms after your TURBTs and BCG infusions?
Is what I am experiencing side effects from the treatments or is it the BC becoming active again?
Bladder Cancer – Non-Invasive 2019
High Grade – T1
2 TURBT – 2019
9 BCG Infusions – 2019
Ureter Tumor Discovered – 2021
Hello RJake1!
New Year is here ! how are you new resolutions going? :)
I do agree that there is no real correlation between exercise or lack of and BC. Keeping my body in as best shape as I can boosts my energy (lack of energy is the worst side effect I have felt following BCG). In turn, my emotional strength grows too. It works for me.When first diagnosed it was total shock, denial of course. Nine months in, following TURB, first round of 6 BCG and second round of 3, I find myself not even thinking about it. Is this a positive sign or is this going back to denial? I would rather think that it is positive thinking…….
Good luck with your journey! WE CAN DO IT…..FIGHT…..
Exercise is always a good thing so I am not knocking it, but is there any proven physical correlation between exercise (or lack of) and bladder cancer? Or, to put another way, is the advice to exercise more of a psychological tool in that the patient feels like they are in control and are taking the fight to the enemy? BTW, I am the world’s #1 couch potato. New Year’s resolution is to get away from TV and move, move, move!!
Thanks. Happy Holidays!
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