BCG??

[AlisonBC]

I am new to this site and wondered if someone could explain what BCG treatment is.
Thanks in advance.
A

[cheryl9]

Hello Alison

I am not a medical professional so my explanation will be pretty basic:
– BCG, or Bacillus Calmette-Guerin, is a potent immune stumulant that is currently the best available treatment for superficial bladder cancer. BCG is a living vaccine for tuberculosis. When placed in the bladder it attracts white blood cells that multiply, make cancer-killing molecules, and attack cancer cells
– BCG is up to 78% effective for BC
– BCG is not chemo, it is an immune treatment
– BCG will not cause your hair to fall out
– BCG treatments are done once a week, for 6 weeks with the BCG placed directly in the bladder via a catheter
– BCG treatments take mere minutes to do
– BCG treatments do require follow-up afterwards that is actually quite simple to do. Best to take the day off, though. Makes your life easier
– BCG does have some side effects that could make you feel like you have the flu for up to 48 hours. Side effects vary by person

Check the info under “Facing Bladder Cancer” tab above and specifically the glossary of terms and the patient guidebook. Also peruse through this forum to find lots of real life information.

How new are you to BC?

Whether new to BC or not, my advice: take a deep breath or two or three or four or however many it takes; hug those you love; spend time with those that you are close to; learn to laugh again and then you will start to heal emotionally and mentally.

You are not alone. There are lots and lots of us that have been through what you are going through.

Take care

Recommendation: don’t spend much time on other sites researching bladder cancer. Other sites will scare you pants off. This site is way more realistic.

[marysue]

Hi Alison:

Welcome to Bladder Cancer Canada and the site that no one wishes they belonged to. That being said it is one of the best places for support, get questions answered etc.

Cheryl has pretty much covered what BCG is. However, I will add that BCG stands for Bacillus Callumette Guerin (the official name for the drug).

If you or someone you know is facing doing these treatments and has any concerns or questions, don’t hesitate to let us know. Many on this site including Cheryl and myself have done lots of these treatments and can give the low down on this. Take care and stay in touch. (((((HUGS)))))

[Jack Moon]

Hi Alison

I have had several BCG treatments and have been cancer free for eight years now. BCG is the gold standard treatment for non-muscle evasive bladder cancer. Side effects do vary by patient, the most common seem to be urgency, temporary burning while urinating, flu like symptoms, and fatigue.
Usually the side effects are short term and progressive with treatments.
Many here on the forum have experience with BCG treatments, so any questions you may have we are here to assist.
All the best,
BCG = Bladder Cancer Gone
Jack

[AlisonBC]

Thanks everyone for your help. I did after read the glossary.

I was diagnosed in 2007 at the grand age of 36 and it took me 2 yrs to have my symptoms taken seriously. Practically lived on antibiotics during that time as doc was adamant was a uti. Saw another doc who initially sent me for urodynamics (what a waste of everyone’s time). Then later had cystocopy followed by ultrasound followed by Ivp. I had my surgery 2 weeks later and had chemo treatment within the bladder for two hrs (this was done in uk). Moved to Canada in 2008 and had recurrence surgery in 2011 followed by something given by iv (??). Just had another surgery to remove another tumour on Oct 13th and don’t believe I was given any medication etc. Nearly two weeks on am still having pain on urinating and am expected to have another cystocopy on Nov 2nd. Can’t say I’m looking forward to it and don’t want my pain to get worse after more irritation. I find this a lil odd as I normally go straight to a 3 month check. Don’t believe I have ever had BCG hence why I asked. I don’t ever get paperwork so sometimes find it difficult to get explanations unless I sit down in my consultants office which has been rare over the last few yrs.

Just wanted to share and see if my experiences are normal or sometimes expected. I don’t normally talk to anyone about this incl my family and kids, who don’t know that I’ve just had more surgery – I can worry enough for everyone!

Thanks for listening.

[Jack Moon]

Hi Alison

I recommend you ask your Urologist for a copy of your latest pathology report. The report will indicate the type of bladder cancer you had, along with the stage and grade. Also the report will show the margins of the tumors that were sent to the lab for testing. I would also ask the doctor what the plan will be for treatments going forward. If the the doctor is not forthcoming with this information, then I would recommend you get a 2nd opinion.
All the best,
Jack

[cheryl9]

Hello Alison

Wow, sounds like you have had the short end of the stick in the past.

I have had scopes done a month apart. Don’t let this scare you. One way to look at it: if there is more tumor present, it will be removed and this will put you one step ahead and potentially cancer free. As I like to think: keeps those cancer buggers from having free reign in my bladder.

Pain on urinating: how much fluid do you consume each day? I find the more liquid, the easier it is to urinate or, conversely, the less liquid, the more pain. Also, how much coffee do you consume? Coffee will irritate the bladder. Try yogurt with live bacteria and steer clear of spicy, acidic foods for a couple weeks. Alcohol? In my opinion, a big no-no. If you smoke, quit. Smoking ins the #1 risk for BC.

Most important is to talk to your family and let them know what is going on. Not fair to them or yourself to keep this secret. It will cause more damage than you can imagine because your family will feel betrayed and that they are not important to you. Your stress levels will only climb and you will feel very isolated. The only way your stress will deflate without exploding and damaging yourself and others around you is for you to talk about it. You will cry. A lot. Don’t be afraid, though. This is how you will start to heal.

Stop this vicious treadmill you are on. It is getting you nowhere. Go to a quiet place and take a deep breath or two or three or four or however many it takes. Then let yourself cry. Cry all that you need to. Then go hug those you love and cry some more. Then spend time with those you are close to. Talk. Apologize. Cry some more. Apologize again and then stop apologizing. You don’t want to get stuck in that guilt loop. Talk and hug some more. Then find something to laugh about. Once you can start laughing again you will truly start to heal.

My thoughts are with you.

Take care

[AlisonBC]

Thanks Jack and Cheryl for your advice.

My first turbt was a 3cm stage 3 noninvasive papilloma which was treated with mitomycin directly after surgery and due to the nature of it (can cause burns to your skin if splashed) so was filled and emptied by catheter at the hospital.

My 3rd turbt was done October 13th (so almost 2wks ago) and will be 3wks (Nov 2nd) when I’ve been asked to go for follow up Cyst. I have never felt this irritated after surgery and wonder if this is normal. I’m trying to work thru this but to say my minds not on my job is an understatement. I start my day with a large herbal tea with lemon and honey. Do drink decaf coffee and water at work. When my bladder is fairly full (gotta go about every 2hrs) it’s ok initially but halfway and ending the pain and irritation gets more intense. Abit like a uti but different. I have a nagging drag too that won’t go away. I’m wondering whether it’s more damage to uretha than bladder? I’m gonna call my consultant and ask tomorrow – since my surgery (apparently they had problems raising my blood pressure) I’ve felt lightheaded and sick and not sure if it’s all related. I will ask about this BCG too.

My hubs and kids live here in Canada whilst the rest of my family are in uk. My eldest son who’s 22 is autistic and takes things quite literally so don’t want to go there. I have a family member that’s terminal with cancer so don’t want to add to their worries. I can and have dealt with this and will continue to.

Does anyone ever actually kick this for good or is it like a forever pimple. Just feel drained!! I’m almost at a point where I want to say ‘screw work I’m putting me first’.

Jack I will for sure be asking my doc for copies of my reports – wasn’t sure I could. I’m also hoping to change my gp soon as mine is pathetic and hasn’t been telling me when I get recalls for other ongoing stuff. I’m sure we all feel wow wouldn’t it be great to switch bods with someone else but I guess you deal with what you get. I’ve done the crying stuff and that’s scary in itself – it certainly doesn’t help make things better. Stress is the no. 1 cancer grower and I’m told causes inflammation too. So I try not to stress!!

Healing thoughts and prayers sent right back at you. Thank you

[cheryl9]

Hello Alison

Can always seem scary when you don’t bounce back as expected after a procedure. For the pain and irritation, stress may be a big part of it. Stressing in anticipation of pain pretty much guarantees there will be pain and it will be worse. Try this: deep breathing while urinating. Breathe in through your nose and out through your mouth. Takes a bit of practice but it should help reduce the pain.

BC is not like a forever pimple. I know of several people that have gone a lot of years with no recurrence. On the other side, BC is with one for life in the form of monitoring and this really isn’t that bad. You will always have the opportunity to stay on top of the BC and when you get to the annual checkups, it is an opportunity to reinforce being BC clear and that is a very good thing.

Take care

[Jack Moon]

Alison I have been 8 years all clear on Nov.10th. So there can be light at the end of the tunnel even after a few recurrences.
Stay positive.
Jack

[krbeave1@gmail.com]

Hi Alison ! I won’t go into the technical details of my experience with BC . Suffice it to say that I’ve had 3 TURBT procedures since late January 2014 . The most recent was not quite a month ago . The physical part of dealing with this disease is bad enough but the psychological effects are the worst part in my estimation . If you can’t even talk to your family about this I strongly urge you to seek counselling , not just for your own good but for theirs . Cancer centres usually have a staff of psychologists , counsellers , psychiatrists and social workers available to you and your family .
You really need to be able to talk with people about this . When we suffer from this disease we need and must be able to accept that we need all the help we can get . And really , you can be alone in the midst of a family too . None of us has to go through this alone .

[Author]

Posts