BCG

[GM]

Why do some people get BCG and some don’t? Would it not be safer to get it? I have low grade stage 1 and he just took the Tumor out. Maybe I should have gotten the BCG too. What do you guys think?

[cheryl9]

Hello

Sounds like you are new to the BC world. Welcome, but sure wish you didn’t have to be here.

Read the information on this site to familiarize with BC. Then look through the posts on the forum. DDep has a lot of good links to further info about BC.

Overall, BCG is the “gold standard” for the right type of BC and this includes a vast majority of BC. Based on what has been posted on this site, though, sounds like treatment types are all over the place here in Canada.

Ask your uro why you are not getting BCG. Also find out what experience your uro has with BC. Huge difference between experienced and inexperienced uros in regards to BC. Pursue a second opinion. I have the impression that there is a really good uro in Calgary for BC. This site can help you with referrals. Jack Moon is a good contact for referrals. Private message is best.

If your gut is calling your uro’s response/attitude into question, follow your gut and get another opinion. If there is one thing I have learnt is that not all doctors are created equal. Some will fight for your life and others can’t be bothered.

Remember that opinions are available for the asking but you only have one life and one bladder. Be proactive about your life, don’t be shy about it and don’t apologize until after when you have a better idea who should be doing the
apologizing: you or the doctor.

Then through this all remember to breathe. Take a deep breath, two or three or four or however many it takes. Then hug those you love, spend time with those that are close to you, talk, cry as needed then find something to laugh about. Once you can laugh again you will start to heal.

Take care

[DDep]

Hi GM

Welcome to Bladder Cancer Canada … Not good to have BC but as you can see, we are here to help one another and that is a GOOD thing.

Just my thoughts to your Questions …

Why do some people get BCG and some don’t?
Answer: My best guess is that it depends on the patients Risk Profile (eg. EORTC Risk tables); The Urologists preferred treatement regime (Chemotherapy versus Immunotherapy); The Urologists knowledge of BCG treatment.

Would it not be safer to get it?
Answer: I would think so.

I have low grade stage 1 and he just took the Tumor out. Maybe I should have gotten the BCG too. What do you guys think?
Answer: I would.

HTH (Hope this Helps)

God Bless

DDep

P.S. Sorry. Post amended. I wrote the original late at night … information overload.

[Jack Moon]

Hi GM

I think you really need to have your Uro clarify your pathology results. There is a big difference from stage TA and T1. Usually most patients diagnosed with low grade tumor the stage is TA.
You should also get a copy of the pathology report for your records.
All the best,
Jack

[EddieM]

Hi GM,

Jack pretty much sums it up. A chat with your Uro would be a good idea.

I was diagnosed with a Ta stage low grade tumour and had a TURBT and a single treatment of Mytomycin C shortly after surgery. Otherwise I haven’t had any other treatments to date (over 2 years and counting). My tumour was 2.7cm in size. Your Uro may feel that you do not need further treatment, but best to chat with them and understanding their views.

Ed

[Rick B]

Hi GM,

I recall your prior post on continuous sighting of blood in your urine on Thursdays. How has that changed? Do you still have the issue that you explained earlier? Was your Urologist able to identify the issue?

As to BCG treatments…most Urologists will have a plan to deal with each Bladder Cancer situation. Not having BCG treatments is not necessarily a bad thing. The course of action suggested by your Urologist is probably the direction you want to follow, at least for now, unless you have tumor recurrences which will need further investigation and appropriate action.

Hope this helps…be well.

Rick

[GM]

Hi all! Thanks for your replies. Definitely got me thinking.

I do have the path report. And I did/do have Stage TA, low grade cancer. It was small. 1.4 cm Tumor. Not sure if this is why I didn’t get any further BCG or what.
Still having blood in urine on Thursdays…..6 weeks after my TURBT. Pretty sure that’s not normal. And why on Thursdays is beyond me. I do have a call into my URO. Hopefully I’ll get to talk to him tomorrow.
What a crazy yr it’s been for me…..and we’re only 6 weeks in! I hope it gets better cause so far, it’s sucked!!

[Jack Moon]

Hi GM
Not great that you had bladder cancer, but TA low grade is the best possible outcome for bladder cancer. Having just 1 small tumor, and being low grade is the reason the Uro has not recommended BCG at this point. I would recommend you do speak to your Uro regarding the blood still in the Uro.
All the best going forward,
Jack

[DDep]

Hello GM,

Not a good way to start the year BUT, It looks like you are in very good shape with a Single, TaLG less than 3cm tumor. You are probably just going to be monitored by Cystoscopy. As Jack said, it is the best possible BC outcome. I would be feeling very relieved – it is as good news as one can get.

I would recommend the following:
1) If you smoke – Stop smoking
2)Take Vitamins A, E, and Lactobacillus Casei daily. (Do you really want a reference for this?)
and, as others have said,
3)Talk to your Uro about the bleeding if it persists.

Now, put the BC behind you and LIVE !!

Good Luck

DDep

[rock2013]

Welcome!, ask questions and request more tests. in my case, I was visiting my in-laws in the Niagara region. Severe bleeding, 4 days at Niagara health services (NHS). Ultrasound, cysto and more. Discharged, told to drive back to Ottawa and drink lots of water.

5 weeks later, family doctor called and advised by NHS they found some abnormal cells and to make an appointment with the Urologist. Cysto done tumors found some on the wall of the bladder. 4 weeks later a TURBT done, results: HIGH GRADE STAGE 3 AND MUSCLE INVASIVE. 4 months of chemo, bladder, prosrate removed. Yes NHS I enjoyed the trip back to Ottawa!!.

While I understand errors are made and corrected, Niagara did not see any tumors during the cysto. Only a report from the lab 5 weeks post discharge. Ask questions, get copies of everything. When you are finished asking questions, ask more questions!. A second opinion is sometimes required. Welcome and best of luck.

[marysue]

Hi GM, welcome to our site that no one wishes they belong to…The others have pretty much given you the advice…I concur that the bleeding is a bit unusual…check in with your uro.

[krbeave1@gmail.com]

GM, after my last TURBT (2nd in 3 weeks) I bled for almost 9 weeks so I couldn’t start BCG while there was an open wound in my bladder .You should avoid getting it into your bloodstream. So 6 weekly treatments will be followed by another set of 3 after 6 weeks and another cystocopsy then….?

[KIOWA]

From a clinical perspective I would say it would be safer to get it. However that is just the short simple answer and there are a number of opions on that I guess. I had a tumor like yours in 1992. My urologist removed it with no other treatment. I went about 18 years with no other bladder problems. I did however have cystos yearly and I highly recomment that to anyone who had BC. At the 18th year another tumor of a different type came olong. That time I got BCG. Made me violently ill and the tumoprs kept recurring. I then got Valstar and the tumors went away. So far I have been tumor free for about 5 years. Now I get cystos every six months and will for the rest of my life and I have no objection to that at all. Hope this helps a bit.

Kiowa

[shelties]

Hi everyone, I just have to share my good news for a change! I had my cystoscopy this morning and I got the “ALL CLEAR”!!! Needless to say, I’m over the moon! Now if I could just get rid of this lung cancer—– well that isn’t going to happen. I guess the best I can hope for there is that they can control it for awhile. I’m learning to be thankful for small mercies.

Chin up GM! I felt just like you when this journey with bladder cancer started and getting this good news today just made my day! Ask questions when you don’t feel you understand what’s going on and keep at it until you do get answers. This life is not a dress rehearsal and we only get one kick at the can, so do your best to make it work.

As for you Kiowa, stay out of those trash cans.

All the best to everyone having stuff done in March!

Lorraine

[Jack Moon]

Hi Lorraine

Congrats on the all clear, you certainly deserved the good news!
All the best,
Jack

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