BCG Advice for Women with Bladder Cancer

What is BCG?

 

Bacillus Calmette-Gurin (BCG) is an immunotherapy treatment for early-stage bladder cancer. It's used for noninvasive (stage 0) and minimally invasive (stage 1) bladder cancers. It's used to help keep the cancer from growing and to help keep it from coming back. 

 

BCG was approved by the FDA in 1990, and was the first cancer immunotherapy to be approved. What is interesting, scientists still don't fully understand why the treatment works. They just know that it does!

 

BCG is instilled into the bladder by a foley catheter, the same kind that you get at the hospital when you have surgery. The catheter first empties the bladder of any urine still left in there (you just peed in the cup, there won't be much!). Then the medicine is instilled in the bladder, and the catheter is taken out. This form of instillation is called intravesical therapy. 

 

After the BCG is put in your bladder, you are then asked to hold it in your bladder for 2 hours, if you can. The BCG can be very irritating, causing bladder spasms, and urinary urgency, burning, and frequency.

 

BCG contains a live form of tuberculosis (TB). A potential, and VERY rare side effect of BCG bladder instillation, is getting TB. If that happens you will need 6 months of IV therapy. 

 

People that have prepared BCG without being careful have got TB. If you are not careful at home, you potentially could give TB to family members, or yourself. So it needs to be properly disposed of. Scroll down and look under the section about bleach for more information about how to disinfect your urine properly

How does BCG work?

 

BCG is called "immunotherapy" because it's getting your immune system to fight the bladder cancer. It irritates the bladder wall, and this is why it's good for early stage bladder cancers that are on the bladder wall. That is exactly where the cancer is.

 

This irritation from the BCG causes inflammation, in which your immune system is activated. 

 

The BCG irritation is like putting a huge red flag on your bladder, telling your immune system, there is something wrong here... look closer! It does look closer, and has very successful rates, of finding that cancer, and it not coming back.

 

What is the Schedule for BCG?

 

First thing, before BCG starts, your tumor is going to be removed and sent to pathology, to find out if it's cancer, and if so what stage and what grade. The tumor removal is called Transurethral Resection of Bladder Tumor, or for short TURBT. 

In simple terms, they go through your urethra (can you say OUCH!) to take out the tumor. The camera, and the tool that cuts and pulls the tumor out... yeah it all goes through your TINY URETHRA!! When I had my TURBT, my urethra hurt just as much, if not more, and for just as long as my bladder did, as I was healing from the surgery.

 

After the TURBT, your doctor will wait 6-8 weeks to start BCG treatments. They want your bladder wall to be healed. If there is a huge open sore in there, it's more likely that you will get TB when you have your BCG treatment (that is what my doctor told me anyway!). 

 

The first round of BCG is for six weeks. When you get to the doctor's office, they will have you give a urine sample. If you have a urinary tract infection (UTI), the BCG will not be given. If you are in the middle of treatment, it will be suspended for a week, while you are put on antibiotics. If you have not started, it will not be started for a week.

 

You get one instillation of BCG, once per week. With each week, the symptoms will come on faster, will get worse than the previous week, and will last longer. 

 

Two months after the BCG treatment, your urologist will take a urine sample and run what is called a urine cytology. That is a test to look for abnormal cells (cancer) in your urine. During that visit you will also have a cystoscopy (cysto for short), to see if the BCG was successful. If there is a tumor growing, you will have another TURBT, wait 6-8 weeks for healing, and have another six week round of BCG. 

 

You have to start over. We are all hoping we don't have to do that.

 

Get used to the cysto's. They are going to be happening every three months for a very long time. If the cysto comes back clear, and the the urine cytology comes back clear, you will then start your maintenance BCG. 

 

What is Maintenance BCG?

After the initial round of 6 weeks of BCG, you will be given a "booster" or "maintenance" BCG doses, to keep the BCG at a theraputic range in your body. If your cysto's and urine come back cancer free, then you will have BCG once per week, for three weeks at 3, 6, and 12 months after the initial BCG treatment. 

The first maintenance BCG is at three months AFTER your last dose of BCG. The maintenance is once a week, for three weeks. 

 

Currently I'm in week two of my first maintenance BCG (so I've had a total of 8 BCG treatments thus far, 6 weeks of the initial BCG, and week 2 of the first maintenance cycle). 

 

I wish someone would have told me what to expect with the maintenance BCG. I was expecting it to be easy peasy, like the initial 3 weeks the very first time I had it. That has not been the case for me, and others I have talked to. 

 

Week 1 maintenance, is more like week 3 or 4 of the initial installation. Plus, because I hadn't had an instillation for 3 months, it really smacked me hard! I was not expecting that.

 

The effect is cumulative. The BCG is still doing it's work 3 months after the initial 6 weeks! It's building upon itself, to stay at a therapeutic level in your body. 

 

Think of it like antibiotics. It takes a few days of taking them for your body to get to a "therapeutic level". That means that a certain amount of the drug stays in your body... it builds up to the level it's supposed to be, to be able to kill the bacteria in your body. Then you keep taking the medication even after you feel better, to keep that level therapeutic, long enough to kill the bacteria.

 

The BCG builds up in your body the same way. 

 

I just spoke with a woman that is on her second maintenance BCG (12th BCG). She said it was even harder than the first maintenance. So hang on! Cancer treatments are not awesome, but in the case of BCG, it has really awesome success rates. So it's worth it! 

 

I think half the battle is knowing beforehand what to expect. That is why I'm writing this post. There are so many things in my experiences with this that have been difficult. I wish I would have known many of these things before I started BCG.

I hope this can help others!  

 

So plan on the BCG maintenance being difficult. Ask for help. Clear your schedule. Have meals brought in. I'll talk more about this later. 

 

The rest of this article will talk about what to expect with BCG and after BCG, and how to prepare for it. 

 

Perineal (Peri) or Hygiene Bottles

 

Having a peri bottle or two is absolutely awesome for women going through BCG. This is one of those things, that I wish I had known before starting BCG. 

 

I have two of them from when I had babies, but you can get them most anywhere. They spray water on your perineal area (vagina, urethra, labia, rectum). I use one on my vaginal area, and one in the back by my rectum. 

Here is a picture to remind you of your anatomy in your perineal area:

 

The BCG is very irritating, because that's what it's supposed to do. It irritates the bladder, but it irritates everything else on it's way out as well! 

 

For me, the BCG gets on my labia, and around my rectum area after I pee. This is totally normal, your labia is the extra folds that surround your vagina and urethra. As we all know, as women, when we pee, it can kind of get everywhere down there, and BCG REALLY makes that apparent!

 

When I first did BCG, I would wipe as usual after urinating with just tissue, but found out quickly that my whole peri area was getting really irritated and dried out quickly.

 

After the instillation of the BCG, you will be given wipes to clean up. This is appropriate to use them at this time at the doctors office, to clean off excess betadine (that was used to clean you before the catheterization), and the lubricating gel that was used in the catheterization. 

 

Once you are home, don't use wipes! It will ADD to the dryness and irritation. There is alcohol in wipes. This will only cause further irritation.

Use the peri bottles with water, after every time you pee, for about 12-24 hours after the BCG is given. Your perineum will thank you! 

 

Zinc Oxide Cream for Your Labia Majora and Rectum

 

Zinc oxide is just not for babies bums! It's a skin protectant. It puts an oily barrier on your skin, and will help dramatically with irritation.

 

I personally have not tried this before, but another woman that has done BCG was told to do it by her doctor, and it has worked really well for her. I plan on doing it for this next treatment. 

 

Rub on zinc oxide cream on your labia majora (look at picture above) before your first urination after the BCG treatment, and as needed. Don't do it BEFORE you get it. They need to clean you for the catheterization, and zinc oxide  would make quite a mess trying to do that. 

 

By the way, it doesn't go inside the labia (minora) or in your vagina. It's for the outside of your skin only. It is ok to put it on your rectum (the whole you go poop out of, see picture above) as well, if that is getting sore. 

 

 Poise Pads or Adult Breifs (Diapers)

 

 

Be sure to wear a menstrual pad/pull up to your appointment. A friend of mine who has had issue with urine incontinence (some leaking), told me about Poise pads. These were designed to catch urine. So instead of the regular menstrual pads, they are a bit different. The fit different, and they hold urine better than a menstrual pad in my opinion. They have been amazing to use! I highly recommend them!

 

I get the largest size, because I want to make sure I have plenty of coverage if there was an issue on the way home, not being able to hold the BCG in. I live 40 minutes from my doctors office. So this was a real concern for me. Also, after having 3 babies, if I sneeze, or laugh too hard, well I leak just a titch. If you have BCG in your bladder, you want to catch that leak on a pad.

 

Also, think about buying some cheap underwear to use just for BCG, because it's going to get stained! The pyridium you will take will turn your pee orange, and it stains your underwear. If betadine was used to cleanse you before the cath, for the BCG, it will also stain. It's quite the orange mess down there, even after using peri bottles or wipes (in the doctor's office) to try and clean up. 

 

Additionally, after the catheter is taken out, some of the BCG is on the catheter, and so immediately it's on your labia, and peri area. This can then be transferred to your underwear. 

 

If you are wearing a pad, you can easily throw the pad away, and keep things much cleaner that way.

 

 

Disposable Underpad

 

 

I put one of these on the seat of my car, just in case. If I was to have an accident, I don't want TB all over the seat of my car!

Premedicate With Pyridium, Oxybutynin, and an Anti-Anxiety

If your doctor didn't order these medications for you, ask for it!! It's always better to have these things beforehand. You don't want to be sitting in the bathroom crying, rocking back and forth because of the pain and irritation, anxious for your doctor to return your phone call, and then call it to the pharmacy, and pick it up.

Can you tell that has happened to me? So listen to me and pre-medicate! I promise it will help.

 

I take pyridium and oxybutynin about one to two hours before the installation of BCG. At this point I have not had to take an anti-anxiety, but if I'm not able to relax during the procedure, then I would.

 

The Pyridium will help with the stinging and urgency and pain with urination that will come after BCG.

 

The Oxybutynin... oh this helped so much!!! This helps with bladder spasms. It doesn't relax you (the "oxy" in the name first made me think it's a pain pill... it's not), it only relaxes the bladder. So this is not for anxiety. 

 

Week 3 of my first 6 weeks, I found this out the hard way. After I did my initial pee after holding the BCG for 2 hours, my bladder SPASMED like crazy and it didn't stop for 10 minutes straight!! It felt like I was in labor. I didn't know my bladder could have such power!

 

Instant tears from the pain! Thankfully I remembered how to do Lamaze breathing again! LOL!

 

The spasms eventually subsided, but I don't ever do BCG without Oxybutynn on board now. 

 

Don't hesitate to pre-medicate for anxiety. Anxiety is a natural part of all of this. Nobody wants to do cancer treatments. It feels like you are purposely hurting yourself. 

If anxiety is making the procedure more difficult and traumatic, take something for it! If anxiety is creating so much dread the night before and the day of, take something to help take the edge off. Your job is to support your body, mind, and spirit, in whatever way you can. 

If anxiety is causing the bladder spasms to be worse, take something for it!

Have someone drive you so you are not driving under the influence of anything.

 

If you can get it, marijuana edibles would be great for this. 

 

Remember, it takes 3 hours for edibles to take effect. Take the recommend dose and don't take more!! You can overdo it really easyily. Believe me, my husband is an ER doc and he has seen this happen more times than he can count. People take some, and they don't feel anything, so they take more, don't feel anything, and then 3 hours later, they are in the ER because they are hopped up on goof balls! 

 

Also remember edibles are in your system for 12 hours after you initially take it. So it will help for your whole first day, which sounds really nice to me. 

I have not taken anything thus far, but I think I'm going to try it with my next one tomorrow. I'll let you know how it goes.

 

Something to know about pyridium... it turns your urine orange - like REALLY orange. You have to give a urine before each BCG treatment. Between your urine turning orange from the pyridium, and being so concentrated because you are dehydrated, get ready for a dark orange urine color! One week it almost looked like blood. You should have seen the face of my nurse assistant! LOL!

My Go Bag - Accidents and Urination in Public Bathrooms

 So if you have a bit of a drive from the doctors office, and you have to hold the BCG in during the drive, you should be prepared for worst case scenario. You might need to pull over and use a public restroom. 

 

Or if the urgency gets so bad, you might wet yourself, and you will have a hot (or warm! 😂) mess on your hands. 

So... I have a go bag. I think it is always better to be prepared. Thank goodness I have not had to use it, but it's nice to know that if I did have some problems, I would be able to handle it.

 

It has the following: 

 

1. A large waterproof bag - to hold the soiled clothing. 

2. Wipes, to help clean me off. 

3. A towel

4. A disposable underpad (the one you were on will be soiled)

5. Underwear

6. Poise pad

7. Comfortable pants/shorts

8. Bleach

9. Hand sanitizer

Remember, if you use a public toilet, you will need to let the bleach sit in the toilet for 15-20 minutes before you flush. Look under the bleach section for more information.

 

Wear Comfortable Loose Pants

 

 

I always wear comfortable loose bottoms when I go have BCG, with a loose elastic waistband.

 

Week one and two of the initial 6 week BCG, this wasn't really an issue. But week 3-6, and maintenance BCG, it does make a difference for me! 

 

I noticed that my stomach/bladder area would get really sensitive to anything, even kind of tight. My abdomen gets achey. I believe this is my bladder spasming a bit. My abdomen seems to swell up after the BCG treatment, beyond just my bladder filling up. It can get uncomfortable. The comfortable pants have been very helpful. 

 

Being comfortable will also help you hold the BCG for the 2 hours, decreasing the bladder spasms and irritation.

 

 

Disinfection and Bleach

Have a bottle of bleach in your bathroom. 

 

You will have to bleach your urine (about 2 cups) after each time you pee for the first 24 hours. 

 

Let the urine sit for 15-20 minutes at least. This gives time for the active TB to be killed. My doctor said after six times peeing you don't have to do this anymore. I've seen others say 24 hours. I guess it just depends...

 

The first few weeks my first six times peeing is about 20 hours. By week 6 it was about 4 hours! 

 

Because the urgency, frequency, and burning with urination got worse each week, I was having to go pee more often. So by week 6 you should be going by the amount of hours, and not the amount of times you pee.

 

All I do is I pee the first time, throw in the bleach, turn on my bathroom fan, and close the door (after washing with the peri bottle, washing hands, new pad, etc.). I don't flush again until the next time I need to pee. 

I just always do the 24 hour rule - bleach your pee for 24 hours after instillation.

 

Have a Set Bathroom Only You Use

 

 

You want to isolate your bathroom area for at least a few days, so you don't spread the TB to anyone else in your house. I have my 7 year old daughter make me a "DO NOT ENTER" sign, that I post on my bathroom door when treatments starts, to remind everyone not to come in. 

 

 

Have Someone Drive You to Your Appointment

 

I'm a young, really independent woman. The first week of my BCG appointment, I was contemplating driving myself. I'm a nurse, I know what this procedure was going to be like, and I can drive. So what's the big deal right?

 

Well I'm glad I didn't do that! I had my husband drive me just in case, because I didn't know how I was going to react to the BCG. The drive home has not been awesome. It has progressively gotten worse, as expected. Even the very first time, week one, I was not feeling great on the ride home.

 

After the BCG is put in your bladder, you might start feeling weird. For me, I get a little dizzy, I get some weird burning starting in my legs, and near by bladder. My abdomen starts to swell. It's just gets uncomfortable. 

 

You are dehydrated, and you just start to not feel well. I also have a bit of nasea (I already have motion sickness) and get over-stimulated easily with it being too hot/cold, too much noise (turn off music) and the motion of driving.

It's nice to have someone driving you, so you can sit back and try your best to relax. You need to focus on relaxing, so you can retain that BCG in your bladder for as long as possible. If you are driving and not feeling well, you can't do that! 

Plus... come on now! You have cancer. It's time to ask for help. People want to help, let them. Let them love you and support you. Having a loved one take you to your appointments is a good thing. 

 Don't have sex for 48 hours after BCG installation

 

I'm not going to show you a picture for that one. 😂 

 

Not having sex is to decrease the potential spread of TB to your partner. After the 48 hours, still use a condom for at least a couple more days. 

 

 

Stop Drinking Fluids 4 to 6 Hours Before BCG

 

 

You want to be a bit dehydrated when you get BCG, so it's easier to hold your urine/BCG it for the 2 hours. If you are making a ton of urine AND you have the BCG, your bladder will fill faster and the bladder will need to empty sooner. 

 

I usually have BCG about 11 in the morning. I drink a tiny amount (maybe 6 oz) of water that morning. That has been a good balance for me. I'm dehydrated enough to not stress my bladder after the BCG, but it also gives me enough to pee in the cup. 

 

The BCG is stressing your bladder. It's already going to increase urgency and bladder spasms. You don't want to cause more problems by making a lot of urine. 

 

Drink Lots of Water AFTER the First Urination

 

 

You are dehydrated. Your body needs support - so drink!! But wait until after you pee for the first time.

 

Drinking water will flush the BCG out faster, so the really uncomfortable symptoms will ease up faster. 

 

 What to Expect: Don't Plan to do ANYTHING for Days. Rest, Rest, Rest!!!

 

 

Day 1: Seriously. The first 24 hours, you will have a lot of physical symptoms - urgency, frequency, burning with urination, bladder spasms, etc. 

 

The last thing you need is for you to try and take care of someone else. This is the time to take care of you! 

 

My body naturally wants to sleep when it's hurt. So I take a lot of naps. This really helps reset me. I'll have periods of feeling more okay, and it's after I've taken a nap. 

 

The first few hours after BCG, I used to let myself sleep. But I found that I kept having dreams about being burned from the inside, waking up urgently to burning, urgency and pain with urination! It was really uncomfortable and very disorienting. 

 

So wait to take a nap, for at least a couple hours after your first pee. That is my experience anyway.

Day 2-3 after BCG, the "flu-like" symptoms are in full swing. I feel yucky, low energy, too hot, too cold, nauseated, dizzy, brain fog, and easily over-stimulated (sensitive to noises, people talking, and movement... seriously don't even think about getting in a car). I also still have some urgency and frequency with peeing. Keep up the hydration that that will help so much.

 

With each BCG treatment, the brain fog seems to be stronger. I can't concentrate on anything. I can't watch documentaries because it's hard for me to retain information. I can't talk to the repair man because what he is saying doesn't make sense.I can't read my usual books because the plot is too complex. It's super frustrating! 

 

Just hang on, it will eventually go away! 

Day 3-4: this is when it peaks for me. But be careful. It logically seems like you should be feeling better now, and you might start having windows of doing better, but you won't be fully ok yet! Don't plan anything. Make sure you have help with cooking, cleaning, kids, etc. 

 

During this time period after a BCG treatment, I tried driving. It was a BAD idea! I was spacey, and my brain couldn't process driving very well. I would find myself swerving because my reaction time was not good. I don't drink alcohol and didn't have any meds at all on board. It was just the BCG. 

 

I realized that I was not safe to drive. 

 

So stay home!!! You feel yucky and you just need to rest. 

 

During this time, it's even hard for me to stand for long periods of time, like with cooking. I sit at the stove with a chair as I cook, if I have to. When you have a family with young kids, it's busy and crazy, and you sometimes have to do stuff even when you are not feeling well. 

 

Do your best to carve out space and time for your to rest and heal.

You are literally fighting off cancer and TB! You need support!

 

Day 4-6: depending on what week I'm at, I start to feel better. The brain fog lessens. I have more periods of feeling ok to chat with friends. I have more time where my energy comes back, the over-stimulation starts to go away.  

 

Have Meals Brought in

 

 

I arranged for my church to bring meals in 2 times per week during my BCG treatments. I have them come 24 hours after the BCG installation (day 1), and day 3 after the BCG 

 

So for instance, my BCG goes in on Tuesday. I have meals brought in on Wednesday and Friday. These seem to be the hardest days for me, and thus they are the greatest support for my husband and family. 

 

This has been really helpful. I totally recommend asking for help from friends and family. Many people want to help, and are happy to have something specific they can do to help.

 

Let them help!!

 

Rotation

 

When you get the BCG, some doctor's offices will have you stay there for the full two hours (or as long as you can hold it) and have you rotate every 15 minutes. Meaning you lay on your back for 15 min, then you side, belly, side, back, and so on. 

 

My doctor doesn't do this, but I do think it's a good idea, to try and get the BCG around your whole bladder.

 

Personally, when I get home, I usually have about an hour in which I lay down and rotate. 

 

Just do your best! 

 

Use Latex/Nitrile Gloves When you go to the Bathroom for the First 24 Hours

 

 

For the first 24 hours, wearing gloves will make clean-up so easy, and lesson the spread of TB. Even with wearing gloves, after I take them off, I would still wash hands. That just might be a nurse thing! I have to keep my hands clean!

 

Just be really mindful of what you touch when wearing the gloves. Sometimes people feel "protected" when wearing gloves. 

 

After the gloves are dirty, pretend in your mind they have black motor oil on them.

 

E-V-E-R-Y-T-H-I-N-G you touch will be contaminated and need to be washed.Think of the motor oil getting on things. Then you will be able to think of things as "clean" and "dirty". 

Keep it simple, being mindful of what is dirty and what is clean.

 

For instance, my peri bottles, are in the dirty category. The water from washing my girl parts, gets on the bottles, so I have to assume they have TB on them. Treat them as such. Don't let others touch them, and once you have touched them, know that your hands are now "dirty", just as when you wipe your hands are "dirty". 

 

Remember this at the doctors office too. After they are done with the BCG, they take the catheter out. Some BCG is on me. There is also the gel they use to cath me, and also the betadyine. 

 

They give me some wipes to clean up. 

 

When you wipe yourself, you need to treat your hands like they have TB on them (because they do). I turn the tap on with my elbow, and then wash my hands thoroughly, using a paper towel to turn off the tap (always assuming those handles are dirty!)

 

As for the peri bottles, when you fill them, you will need to touch the handles of the tap, after touching the bottles. The bottles are dirty, so when you touch them, your hands are dirty as well. 

So if you are using gloves, put them on before touching the bottles. 

All of these surfaces - DIRTY: Grab bottles, turn on tap, fill bottles, flush toilet, go pee, use the peri bottles, wipe with tissue to dry things off, turn on tap, take gloves off

All of these surface - CLEAN: Wash hands with soapy water for 30 seconds. Pull up pants and underwear. Use paper towel to turn off faucet. Dry hands.

 

All of that being said... don't get too freaked out about the TB stuff. Just do your best! You are going to do great!

 

 

Blood in Your Urine (Hematuria)

 

 As you go along in the weeks of getting BCG, your urine test will start to come back with positive for blood in your urine, call hematuria (hemat = blood; urea = urine). 

 

This is normal. The BCG is irritating the bladder wall significantly. 

 

One nurse assistant that was there to catheterize me, had looked at the results of the urine, and looked at me with big uneasy eyes "you have blood in your urine". Such dread! 😂

 

I reassured her that this was normal for what I was going through. It made my husband and I giggle afterwards. 

Personally, I have not had so much blood, that I could actually see it on my tissue, or in the toilet. I think if there was that much blood, you need to be concerned and call your doctor, or go to the ER.

Is there something not on this list, that works well for you? If you leave a comment, I can add it to this article.